The Henry Family, since 1997

Problem Solving

2012-02-09T08:05:00.000-05:00

Gracie wanted to eat an orange and I told her to wait a minute so I could help her. She decided not to wait and attempted to peel the orange all by herself.

She tried the blue sandwich cutter first...then the spatula...and the mixer beater...

Next was the green popsicle stick and finally the purple spoon

I love the look on her face here...she just wants to eat that orange

Finally, I handed her a butter knife and helped her to cut and peel the orange.

She ate the whole thing.

I love how she wants independence,

how she tried to figure it out on her own,

she kept her cool and didn't get frustrated,

and she's just so stinkin' cute!!

We'll Do This Again

2012-02-06T20:39:00.001-05:00

One day, Gracie's respite worker brought some shaving cream for Gracie to try. We haven't tried that in a long time and I was happy to see how much she loved this and how long it held her attention. We'll be doing this again soon!

She didn't like her hands being messy!

My Lovely

Look at that straight line! We've been working on that and she did it all by herself! What a great way to practice pre writing skills, which she surprisingly likes to do.

Balance?

2012-02-03T20:55:00.000-05:00

In an effort to work on balancing all that is going on in our crazy lives, I thought I would do a high/low post. Here goes...

High: Gracie is sleeping so much better. It's not back to normal, but it is almost there. She had her best night last night and I am hoping for a repeat performance tonight.

Low: Breaking apart and sobbing when at the doctor's office and she was like a wild child. Hitting, throwing, scratching, running out of the room, and totally shocking me and the whole doctor's office.

High: Hitting a new level of acceptance while at said doctor's appointment. Good, bad, or ugly, acceptance is better than denial and means I am not fighting my feelings anymore.

Low: Leaving the doctor's office with two new meds. Changing the meds, and their side effects, is a scary thing. When the meds come with serious side effects, and a child who can't tell me when she is experiencing them, it's unnerving.

High: Noticing a drastic improvement in Gracie and her behavior since starting the meds is a much needed relief.

Low: Worrying that this is going to be too good to be true and we will have to stop the new med for some reason or another. Worrying that side effects will appear and crush my hopes...

High: Getting to do some school work with Gracie since the new meds are working so well. Watching her do things that I have been trying to get her to do for a long time was exciting.

Low: Not being able to focus on Caleb much this week. I really want to do something with him, just not sure yet what it will be.

High: Sleep!! It's a wonderful thing!

Monday Night Ramblings

2012-01-30T22:15:00.000-05:00

It's been another long week for us. Gracie's sleep is better, however she had a bad night last night, and tonight has been rough so far. I really wish someone can explain to me just how my tired daughter can stay awake after taking a sedative...especially when she is all cozied up in bed, after a warm bath, with mommy right next to her.

That just doesn't make sense to me. I have now left her in her room, and she is still in bed, but moving around, making noises and getting sensory input by rubbing her hands all over the wall.

We go back to the doctor tomorrow and I really hope he has some ideas and answers.

I've really missed reading blogs the past few weeks. I feel like I am being left behind and I have no idea if I will ever get caught up. There just isn't enough time in the day, and when I do have time, I am too lazy to actually write or read anything.

I have been spending a ton of time making lesson plans for Gracie. We haven't been doing much work since this sleep problem first started, but I still wanted to keep up with making activities for us to do. I also wanted to make sure we had Valentine's Day lesson plans and activities.

We finally bought a printer this weekend. I was totally in love with it. We got a wireless so I could print from my laptop, where ever I was in the house. What a huge help that was. It worked perfectly for two days and now won't pick up the wifi. I have no idea what is wrong with it, and have spent time reading the manuals and looking online for ideas to fix it. I just want it to work as beautifully as it did for those first two days.

I'm just fried. I need to take a break and stop looking at pinterest, and stop making plans for homeschool. I need to clean my house, and just enjoy my family. I've been extra grumpy and irritable and no one likes me much right now.

I need to find balance in my life, but I just don't know how to do that. It feels like things never calm down, and that there is always something crazy going on.

If you've actually read this whole post....thank you. Thanks for caring and for all of the support you have given. It really means a lot and gives me strength when things are rough.

Still No Answers

2012-01-26T21:41:00.000-05:00

We still don't know why Gracie started refusing to go to sleep, and why she stayed awake for almost 48 hours.

This past week and a half of no sleep has been very hard on me. I didn't expect this to happen. I wasn't prepared for it at all and it totally took me by surprise. Not only that, but the severity of it was shocking. It took me to different places of worry, places of the unknown, where I haven't been in years. The depths of exhaustion made everything much more difficult to deal with.

We have talked with the geneticist and our family doctor. Right now, they are thinking that there is no physical reason as to why she won't sleep.

One thing that keeps striking us is the way that she seem very scared. She does not want to be left alone in her room, and she panics if I attempt to leave her like I used to. This leads us to think that she had some sort of nightmare, or night terrors.

We are still giving her the night time sleep med and have temporally stopped another med. We are going to try this med and hope that it will snap her back into her sleep rhythm. We go back next week to see the doctor and will plan from there.

Things have been better. She is still scared, but I want to keep her sleeping in her room. We are still doing the same nighttime routine as usual. I am putting her in bed and I sit with her and read to her for awhile. She falls asleep and then wakes herself up to make sure I am still with her.

After about an hour, I tell her it's time to go to bed, kiss her, and then leave her. She does get scared, but she is comforting herself, which is a good thing. If she gets too upset, I go back in, put her in bed, and kiss her and tell her it's time for night night. Then I leave her again.

This is the third night I did this, and she fell asleep right after I left her. She didn't want me to leave her, but she stayed in bed and didn't cry. The first two nights I did this, she did fuss a little, but it only took an hour for her to give in and go to sleep, and I only had to go in a few times each night.

During all of this, I have heard many different comments from family members. Some were thinking that I was making a mountain out of a molehill, and that I had nothing to worry about. Maybe they wouldn't worry if their child all of a sudden was petrified to go to sleep, and stayed awake for 48 hours while on sleep meds, but I do. All of their kids could tell them what is wrong, and they have no idea what it is like to have a child go through something like this and not be able to tell them what is wrong.

I am so done with putting up with bad attitudes. All I want is to be understood, and given the benefit of the doubt. If I say that this is rough, if I say that things are not okay with Gracie, then I want to be respected for that. I don't want to be talked down to, and made to feel bad for worrying about my child. I don't want to feel that people are judging me, when I am trying to do the best that I can for my child.

I am the one who is doing this hard work. I am the one who is trying to figure out this mystery child. I am the one who is watching her try to sleep, watching her legs twitch in ways I have never seen, and watching her be miserable. I am the one who is worrying about her, talking to the doctors, and taking care of her all day and night.

I am the one that she is counting on to help her, to take care of her. If you can't at least be respectful of that, then stay away and say nothing to me. By bringing me down, you are taking away from my child when she needs help the most, and that I won't allow

These comments, and the feelings they brought, were just added stress that we didn't need. I didn't seek out these people, they called me. They should have just stayed away. I am done with giving them any of my energy.

Hopefully we are on the right track, and that things will smooth out. I feel we have a good plan, and once we talk to the doctor again, I think we will be better able to handle this situation. Please just continue to pray for Gracie, and for her to be able to sleep.

Update

2012-01-23T11:58:00.000-05:00

We just got back from the dentist and Gracie's teeth are fine. She is getting her 12 year old molars, and two have actually come in. She's not even ten yet, so it is early for her to get these teeth. Caleb is getting them right now as well.

The dentist said that she is probably getting regular teething pain from these, but nothing that should keep her up for so long. The tylenol and motrin that I have been giving her should have taken care of any pain she would be having form that.

So the dentist ruled out anything related to teeth pain.

We are going back to our family doctor today. I am hoping he has some more ideas on what we can do to make this better. Right now, the majority of the people who I have talked to think this is hormonal. I really don't know what to think.

I have no idea what to do for this if it is hormonal. All I know is that something has to be done. She is not herself, she is not eating or drinking much, she does not want to do any of the things she did before, and she walks around and whines all the time.

I need her to go to bed, in her room, like she used to. I miss my evenings off, and the time to myself. I miss my bed, and I miss sleep. I also miss the time I used to get to spend with Caleb after Gracie goes to sleep. We need that time. I have been feeling very badly for him the past week.

Please pray for good answers from our doctor today, and for good sleep for all of us.

From Bad to Worse

2012-01-22T16:39:00.000-05:00

Gracie's sleep problems only got worse. Nothing we did worked for her.

She was miserable. I have never seen her so tired, yet she was unable to go to sleep.

She tried to sleep, and would drift off. Then, her legs would jerk and she would wake right up. Half an hour later, she would do the same thing, drift to sleep, jerk her legs, and wake up.

I started thinking she was having seizures. I have always thanked our lucky stars that she didn't have seizures. It has been one of my biggest fears all along this journey, and I am aware that they can start during puberty.

Hank saw the leg jerk thing, and worried that she was having seizures.

We decided to take her to our quick care on Friday night. That had been our second day of the melatonin, with no success. We also wanted a doctor's opinion about our seizure fears.

We were basically laughed at and told to go home and give her benadryl.

We went home, and I slept in the living room with Gracie. Well, I slept a little, while Gracie sat there. She did not sleep at all on Friday night.

After I got a short nap, Hank,my mom, and I decided to take her to a bigger hospital for some help. We were still concerned about seizures, and the fact that her sleep problems had become so severe as to keep her awake for two days. This was Saturday afternoon, and she hadn't slept since her pitiful Thursday night attempt at sleeping.

We ended up talking to three doctors there, and were given something to help her sleep. It worked and she slept for a few hours Saturday night. I slept as well.

She is still really tired, and really out of it. We are going to her dentist tomorrow, just to rule out any teeth pain. We are also going to talk to our family doctor again and see just what we need to do from here. Please pray for easy answers, and sleep for Gracie.

I Wish

2012-01-19T22:03:00.003-05:00

We really need some sleep.

I think, at some point, she had a very bad nightmare because she is just scared to go to sleep.

Even Caleb said she sounds petrified.

Hank got out of bed to see what was wrong with her because she sounded so scared.

Tomorrow, I will try to explain to her about dreams, good and bad ones.

I will tell her she is safe, and that bad dreams can't hurt her.

I really hope she understands and feels safe and secure again.

WTH?

2012-01-18T21:51:00.000-05:00

Okay, we are seriously sleep deprived here. Gracie has started a very new, strange, problem of not going to sleep.

Here's my thoughts about possible causes:

Too tired
Becoming too attached to me now that she is homeschooled (She's been showing this in other ways)
Sick
Something hurts
Scared of something, dark maybe?
Just being a stinker
Bad dreams
Wants to sleep with me
Wants to be out in the living room with me and Caleb
Acid Reflux
Gas
Constipation
Bladder infection

Our normal routine is bath, jammies, some quiet play time, sometimes a book, then bed. We kiss her good night, cover her up, and shut her light off and close the door. That's it. It took years for us to get to this easy of a bedtime.

If she had any trouble, I would give her a dose of pain med and once that kicked in she would go right to sleep. I used to go into her room, pick her up and put her back in her bed, and she would sleep right through it.

Now, she starts crying right after her bath. She keeps asking for me to stay with her, and to get her dressed. Once I calm her down, she lays down in bed and then I lay down with her. We cuddle, and talk a little, and then I start to scratch her hands and she starts to doze off. After a few minutes of dozing, she wakes up, and asks to go out to the living room. If I attempt to leave her she panics and starts to make some very scared noises.

It has been slowly getting worse over the last week. I don't understand that once she starts to doze off, why she keeps waking up. It is like she is forcing herself to wake up. She just sits right up and asks to go to the living room. When we are in the living room, she will sit up and ask to get up and wander around. A few times, she slept for close to half an hour, and when I tried to put her in her bed she woke up and wouldn't go back to sleep.

This is the third night this week that she has been up late. Last night, it was about 1am before I just shut the gate to her room and went to my bed. I couldn't take it anymore.

What is bothering me is the way that she starts to panic, and acts scared. If I knew she was just being a stinker, then I could make her tough it out and let her know that bedtime means going to bed in her room.

I can't stand the thought of being strict mom if something is really wrong, or if she is really scared. I did take her to the doctor today and ruled out any kind of infection. We talked about a few different meds, and I added some acid reflux chewables, just in case.

I gave her a pretty good sleep aid and it is making her sleepy, but she is still waking up. How can she still wake up with her regular nightly dose of med, which causes drowsiness, an OTC pain med, and a strong sleep aid? How can she wake with all of those meds, snuggled in bed, with her mom?

Progress

2012-01-17T06:00:00.000-05:00

I hope I'm not setting myself up to fail, but I have to say that homeschooling Gracie has become much better and easier. We are really getting into a routine, and lots of good things are happening.

My niece was over the other morning and we both worked with Gracie. She kept asking for more stuff to do and she sat in her seat for almost two hours! Never in a million years did I think that would ever happen!

Most days, she sits down in her seat and asks for work to do. Her attention span is getting longer and she is following directions much better. In a desperate attempt to keep her busy, I have tried things that I didn't think she would like, only to have her show me she loves them.

We have been doing more vocabulary on her talker and she is learning it very quickly. She can now tell me good morning independently and she is really good with talking about feelings and holidays.

We still need tons of activities to do so I am always on the lookout for things. I bought her a fat pen at Target and she loves it. I just let her scribble with it, and help her to draw straight lines and circles. Check out her grasp!!!!

also notice Keith Urban looking up at you from her shirt!

What an Honor

2012-01-15T19:58:00.000-05:00

Our day of having the camera crew in our house is now over. It was quite an experience, one that I am very honored to have been lucky enough to have.

Three men arrived and brought in so much equipment. There were light stands, huge lights, and cords, and bags, and plastic pieces for the lights, and the awesome camera. It was all very surreal, and exciting.

The producer looked around our house and decided where to put everything. He also told me that he was going to interview us separately, which made me very nervous!

The first thing we did was my interview. I was so nervous, and I am now replaying it, over and over again. All the 'should of saids' are driving me crazy! I had a few rough moments and am worried that I didn't express myself very well. The interview lasted about half an hour and I was so relieved when it was over!

The next thing we did was get a little video of me and Gracie interacting, which she would not do! She was under the table, on the floor, and even once I got her into her room, she wouldn't do anything with me. She did well with her respite worker though, so that was very good.

After that, Hank, Caleb, and I had to play a short game of monopoly. We staged it a little, to show that now that we have help with Gracie, we can now enjoy things that we couldn't do before.

Caleb was nervous and didn't want to do it, but he did a great job! The producer walked around the table, shooting us playing the game, and had Caleb do a few things over again. He loved that, and made him feel like he was really in a movie.

It was very exciting, but we were all so glad when it was over! I was very proud of us, for doing something so out of our comfort zone.

The main point of this is promotional for the company that runs our respite service. It is kind of like a commercial. They want to start advertising their business, and this is the first time they have ever done this.

The editing will take about a month, and once it is done, they will call us to set up a time to view the finished product. Once it has our approval on everything, they will put it on their website and then present it at the party in April.

Gracie liked watching the men get set up. I kept telling her we were going to be in a movie, and now that is is over, she loves talking about how she is in a movie.

Caleb was nervous, but excited. He kept the dog by him, so she will be in it too!

The producer had to be sneaky when he filmed Gracie. She is in her room, reading a book with her respite worker.

I sat in that chair during my interview, with the camera right in my face, and all of those lights. It was so surreal!

I just hope it turns out okay, and they like it, and actually use it!

HUGE Day Tomorrow

2012-01-12T20:57:00.000-05:00

Our respite company has a yearly fund raising event, complete with wine tasting, exquisite chef prepared food, live jazz orchestra, and a silent auction. Tickets are very pricy and the event is held in a very swanky tower. The best part is that our family has been asked to be the family they want to present at the party.

This means that a small camera crew is coming to our house tomorrow to take video of us. They want to show Gracie working with a respite worker, and they want to do interviews with me and Hank, and probably Caleb. They will then present this video to the entire crowd at the party, and then replay it during the rest of the party.

To say I have been worked up over this is an understatement. I have been trying to get so much stuff done and I feel like I am just hitting my head against a brick wall. I'm trying not to freak out over this, but my house has been neglected for so many years.

In putting Gracie's needs first, everything else was put aside. It had to be that way. Gracie's needs are so intense, so constant, that something had to give, and that something was my house.

We have clutter everywhere, closets are overflowing with junk, walls desperately need paint, and major decluttering needs to occur. I started to get stuff done this fall, but that all stopped once I pulled Gracie from the school.

Another thing that I needed to do was find something to wear. I mentioned that I have gained a lot of weight, so nothing I own fits. I went shopping today, but had very limited time, and am not happy with what I found.

I needed about six months to get ready for this!

I am trying hard to focus on the fact that this is an honor for our family. This is our chance to show what life is like with a special needs child. This is our chance to show just how important having good respite care is, and just how desperately families need the help. This is a once in a lifetime chance to advocate for families of children with special needs. That is all so much more important than how my house looks.

I am truly honored to be asked to do this, and I am not going to ruin it by freaking out about my house.

(Please forgive any spelling errors in this post. I can't get spell check to work.)

Underestimating

2012-01-11T07:36:00.000-05:00

I am ashamed to say that I have been underestimating my girl for a very long time. Too long. I always used to feel that I wasn't doing that, and that I was overestimating her. What a difference a few weeks can make...

Before we started this homeschool journey, I knew that Gracie knew few letters of the alphabet. What I now know is that she knows every letter. She also knows by sight the words: mom, dad, dog, Gracie, and Henry.

I have been testing her for a few days now, and she will pick the correct word every time I ask her to.
I've even tried to trick her, but she still gets them right. I added a few new words to the array when I ask her, and she still gets them right.

I believe with everything I am that if she can do these words, then she will be able to do lots more. However, I feel like I am way out of my comfort zone here. I have no idea how to teach her this.

I am looking everywhere for ideas and ways to teach sight words, but I don't know what I am going to do. I need to have a few hours where I can read about the different methods and come up with a plan on how to do this with her. However, what I keep reading doesn't back up my plan of starting with easy nouns and family names. I feel like I am being drawn in one direction, but what I keep reading points in the other direction.

I don't want to just fumble my way through this. I also have this fear that I will do it wrong and will mess the whole process up.

First Conversation with Gracie

2012-01-05T16:04:00.001-05:00

I recently had my first conversation with Gracie.

It was during our morning work on her talker.

I asked her what holiday is coming next and she told me Easter. I was talking about Valentine's Day, which I think she actually wanted to push. (She still has mis-hits because of her vision problems)

We continued on with talking about Valentine's Day and what it means. I said to her that Valentine's Day is all about Love. She then went back to the section for V. Day and told me "heart". We talked about making valentine's for our family and I had her push valentine's card. She giggled and was excited about our plans.

Then I asked her what holiday did we just have, and she told me Christmas. I then asked her what was her favorite holiday and she again told me Christmas. I talked to her about what she got for Christmas and she giggled and got excited about it. I said we had a great Christmas didn't we, and she signed yes.

She was so focused on what we were talking about, and she was answering me back and telling me what her favorite holiday is. I did not have to force her to participate, and she spontaneously pushed icons to tell me things. She was truly engaged with reciprocal conversation and it was an amazing moment.

New Schedule

2012-01-05T15:37:00.001-05:00

Over Christmas break, I thought a lot about what I want to do with Gracie's homeschooling. I just wanted a way to make things work smoother, and I wanted lots of activities for us to do. With an attention span as short as Gracie's is, we never have enough activities.

The first thing I did was create a schedule. I wanted to make sure our mornings were clear, and that we had no one scheduled to come over during the morning. I thought that would help us get into a routine.

We start out with Gracie going potty and then drinking her yogurt smoothie. Next, after Caleb goes to school, I start a movie for her and allow myself a cup of coffee. Then comes breakfast. I have Gracie help to make it and she puts stuff on the table. After breakfast, it's time for her to get dressed.

Finally, we are able to sit down and do some work. Right now, she works better when we sit in the living room and use the coffee table. We've tried the dining room table but she really doesn't work well at that.

I put her purple special tomato chair against the wall in the living room, and we pull the coffee table over to her. The table is too high, and wobbly, so we need to find something else that will work.

The first thing we do, once we are seated at the coffee table, is she tells me good morning on her talker. As time goes on, I will increase her morning vocabulary with her asking me how I am, telling me if she slept well, asking what we are going to do that day, etc.

Then talk about the calendar and the weather. I have a magnet set of weather items, but we need so much more. I have found a few calendar boards on PINTERESTand I need to make time to put one together for us. I just know I need to try a few more things with this because she has zero interest in the calendar.

After that, we do a little more work with her talker. We have a few books that we use that targets specific vocabulary. I need to have some time to write a book for her, with the write with icons program I have on my computer. That way, it will show the sequence of pictures she needs to find specific words, and I can have the books be all about our family or things she likes.

Next, we play some games and do some file folder work. I am focusing on number recognition, patterns, following directions, matching, and thinking skills. She has no interest in numbers, and I am trying to teach her one to one correspondence, so I bribed her with marshmallows. I place some number cards out on the table and made her choose one. Then, she had to put that many marshmallows into a cup. I was impressed that she picked three number cards before she lost interest, but she loved when she got to eat the mallows. She asked to do that game two more times just so she could have the mallows!

We work for a short while, take a break, and then work some more. I am trying to stretch her attention span by making her do one, two, or three more turns before she gets to stop.

I spend hours putting things together for us to work with. It makes things so much harder when I don't have the things that I need to create these activities. I would love to have a printer and a small laminator. It takes so much extra time to have to save everything on a flash drive, go to the library, and print things out.

We've only had three days with this new schedule and it is going very well. It is still so hard, but I am really starting to see the benefits of homeschooling Gracie. She follows my directions so much better, she is much calmer and happier. She has also been wanting to do school work, and will sit down in her chair and ask me to sit next to her.

I am getting to know her even better than I did before. I am shocked by how much she knows and I've learned that I have underestimated her. She knows all of the letters of the alphabet and I have started a few sight words. I never thought she would be ready for sight words.

What an amazing girl I have!

An Inspiring Book for Kids with Disabilities

2012-01-04T08:10:00.001-05:00

Ballerina Dreams

Lauren Thompson

I got this book for Gracie for Christmas. It is a beautiful, inspiring book, for all kids. The book is about little girls with cerebral palsy, and other disabilities, being ballerinas. Go HERE to read about the true story that inspired the book.

I remember when this book first came out, a few years ago. I loved the story behind the book, but because Gracie didn't like reading, I never thought about getting it for her. Since her new love of reading has developed, I got this book as soon as I could.

She loves this book. The pictures are beautiful and show little girls dressed in their ballet costumes, putting on make up, and doing a performance for their friends and families.

What's great about it is that it shows the girls wearing their tutus, and make up, and ballet slippers with their AFOs. Gracie is fascinated with looking at the pictures of the girls and their braces. She loves the pictures of the girls getting make up put on, and of their helpers helping them to do moves.

I love the message that this book gives, that no one has to let their braces, their disabilities, stop them from doing things they want to do. I love that my daughter has girls to look at that look like her, and have the same challenges that she has.

I hope that this book gives her the inspiration to keep working hard to do all the things she wants to do. I hope this book makes her feel good about herself, and proud of all that she has been through, and proud of all the things she can do.

Yesterday, after we read this book, I put Gracie's tutu and some lip gloss on her. She pranced around and looked at herself in the mirror, and smiled so sweetly. It was a precious moment that I will never forget.

A Nice Visit

2012-01-03T11:46:00.000-05:00

I had a get together with one of Gracie's parapros from her last three years of school. She, and her almost 30 year old daughter with special needs, came over to our house yesterday. They stayed for about two hours and we had a really great visit.

I very vividly recall leaving Gracie with her for the first time. This was Gracie's first year of real school. She had already done three years of a Early Childhood Developmental Delay class. She went to that class for about three hours a day, but the new class was going to be for a full day.

I was very nervous. I didn't want to leave her with strangers. We had met them a few times, but they were still strangers to us. I especially didn't want to leave her with them for a full school day.

I was trying to hold myself together and not scare Gracie will all of the emotions that were rampaging through me. I was a mess before we even got to the school.

I tried to hide it, but they saw right through me. That's when L came over and sat down next to me. She showed me a picture of her daughter with special needs and told me she knew what I was feeling because she had felt the same way when she had to leave her daughter.

She promised to take very good care of Gracie, and that she would take care of her like she was her own daughter.

It helped to hear that, and I was still scared to leave her, but she did just fine. She did cry a few times, but she was getting used to the people, the other kids, and to the new expectations of her.

After that day, L and I spent a lot of time talking and growing closer. When she was first told that she wouldn't be allowed to move on with Gracie's class this past fall, she was devastated. She tried everything to be able to go with the class, but the administration said no. Everyone had to have a fresh start, including her.

During the time I pulled Gracie from school, L was dealing with her husband dying, and later her mother dying. She wasn't at school and didn't even know what had happened to Gracie. After she went back, she hadn't heard the whole story. She said everyone was very quiet about the whole class, and no one talks about it. She just stays in her own class because she wants to keep her job.

I told her the whole story of what happened to Gracie. She couldn't believe it. She also said that she had never had to fear for her daughter's safety at school and couldn't imagine having to deal with that. She had pulled her daughter out of a room before but that was because she thought the staff wasn't working with her and let her sit around a lot. She doesn't blame me for pulling Gracie out of the school.

We talked a lot about everything. One thing she said really struck me. She said when we first got the talker for Gracie, that most people thought she would never use it. L felt like it was a good idea, and that Gracie should be given the chance to learn how to use one. L even went to her daughter's doctor and asked for a prescription for a low tech board for her. We had inspired her to try a device with her daughter. I love that!

Gracie was shy with her but really liked having them here. Her daughter liked to watch Gracie a little and Gracie kept motioning for her to sit with her. L said she felt very comfortable with letting her daughter pace around, and that at most houses they visit she feels she has to keep her seated in one place. I was glad to hear that she felt comfortable at our house.

We ended the visit with promises to get together more, and maybe next time it will be at her house. I think Gracie would love the chance to go to Miss L's house!

Weighty Issues

2012-01-01T23:49:00.002-05:00

I've gained a lot of weight. A couple of years ago, Hank and I started a life style change and started eating healthier and lost a lot of weight. I worked and worked hard to lose weight, and I lost about 50 pounds. Hank stopped drinking pop and lost 50 pounds as well.

I felt great and was so proud of myself. After a few months, I hit a plateau and stopped losing the weight. I kept at it, and tried a few different things to continue to lose. However, nothing seemed to work, and I slowly stopped trying.

After the past few months of stress, I have gained a lot of my weight back. I have been eating my way through this stress, and am dealing with my feelings by eating them away.

I feel like crap. And I am so ashamed of myself.

I have decided to start working out on the treadmill again and I am looking for healthier recipes. I want to feel as good about myself as I did when I had lost the weight. I also want to have more energy.

It has probably been at least six months since I worked out on the treadmill. I have been walking but not walking/jogging like I used to do. Today, I got on the treadmill and did a quick workout. I was remembering how hard it was when I first started. I was so relieved to see that starting the workout was much easier now than it was years ago. I haven't lost as much of my speed and endurance like I thought I had. I'm hoping that will keep me encouraged to continue with the workouts.

I feel so good tonight. It felt great to work out and I loved the way it cleared my head. I have really missed that part of getting regular workouts. I had forgotten how working my body makes me think more clearly and able to handle stress better.

I know I need to continue to do this, and I sure hope I can keep it up.

Plans

2011-12-31T17:34:00.002-05:00

We don't usually do much on New Year's Eve, and we are keeping to that tradition. We are just hanging out at home playing the wii. Caleb has a friend over and we are eating lots of snacks. Whatever we do, I guarantee it will be much, much, better than what happened last year! I never want to have a NYE, or any other day for that matter, like our NYE last year.

I've been making plans for homeschool after Caleb goes back to school. I want to get into a better routine, and I want to have a lot of activities planned and ready to go. Since we have no budget for this at all, I am finding it hard to have stuff to do with her. And we need stuff, lots and lots of stuff.

What is helping me the most is PINTEREST. I seriously love this site and am so grateful for all of the bloggers who share the homeschooling plans with the rest of us. I get so much stuff for free. Downloads that I just load onto a flash drive and go to the library and print off. File folder games have become my new obsession and I am making them by the dozens.

Hank and I sat Gracie down and did some work with her a few times over Christmas break. Hank has been home from work all this time and he has been a great help. She loves to show things off to him, so I am going to use that as a motivator for her. I will tell her to practice this stuff so that she can show daddy when he gets home from work. We'll see how that helps...

Twice, she sat and worked for about 20-30 minutes. That is HUGE! I think she must have been bored with the old stuff and is really liking the new stuff. Hopefully I can keep her engaged like that once the house is quiet and we are alone.

I've been stuck in this rut of feeling down and depressed for the past few weeks. I am working hard on letting go of my anger toward the school. I really need to let that go so I can just focus on homeschooling. It doesn't matter how hard it is, or if it is best for her, because it is the only option we have right now. There is nothing I can do about that.

I also haven't been writing on the blog much and I think I have figured out why. I don't have much time for it now, but that isn't the only reason. I feel like the only thing I write about is our homeschooling, and the anger I have for the school. I feel bad about that, and haven't been writing. I started this blog to write out my feelings about having a special needs child. I needed an outlet, and this blog led me to meeting some wonderful people. I am not going to stop writing now, just because all I write about is homeschooling. So prepare yourselves for a huge post all about what Gracie has been doing with our homeschooling!

Happy New Year to you all!

The Best

2011-12-28T15:26:00.001-05:00

We had a very good Christmas. It was actually the best Christmas that Gracie has ever had.

She loved opening the presents and kept demanding more. She looked at what she got, and was happy with a lot of things. She held them up for everyone to see. I enjoyed watching her so much that I didn't ever get a really good picture of her.

She got a small dollhouse, and leap frog laptop computer and loved them. She attempted to play with the computer, and she liked putting the dolls and their beds into the house. We actually went to the store yesterday and bought her more furniture and dolls. I asked her if she wanted more, she told me yes, and then helped me to find them. I was so amazed that I bought her two additional sets. She is far away from actually sitting down and playing with the dolls, but her attempts to do some things is a great accomplishment. I never thought I would see the day when she would give toys more than 10 seconds of her time.

The laptop is pink, little, and might not be as advanced as she needs. (I loved writing that!) We thought we would start small and build our way up to bigger and better, and that may happen sooner than I thought it would.

I programmed it to say her name, and send her emails from me, grandma and Ashleigh. It plays songs, and works with the alphabet. She loves that it is just hers and no one can take it away. She is free to push any buttons she wants and she can open and close it as much as she wants.

Caleb got his two wii games that I was worried wouldn't come. We tricked him, like we always do. We gave him the game that he didn't ask for, and put the one he really wanted into a much bigger box. He was really shocked and happy.

He also got his favorite movie, his cologne set we always give him, some hunting theme decor items for his room, a book with hunting cartoons, and lots of other things. He was very happy when he was done opening his gifts.

We had a short get together with my family, and then when to Hank's family gathering. We had a great time there too, and ate lots of good food and way too many treats.

The day after, we got the house all un-decorated. Our tree was in horrible shape and had piles of needles under it. I have never seen a tree drop needles like this one had. Some of our branches were bare because all the needles had fallen. Any time one of us bumped into the tree, it dropped needles so badly that it sounded like rain on a roof. We had to pick the needles up by dust pans full.

It felt good to get our house put back in order. However, I wish it was still Christmas day. I really enjoyed forgetting all of our problems for a few days and am not ready to deal with the crap that has come my way. But that's another post for another day.

Merry Christmas!!

2011-12-24T14:08:00.001-05:00

Merry Christmas!!

'For unto us a child is born, onto us a son is given, and the government will be upon his shoulders. And his name shall be called Wonderful Counselor, The Mighty God, The Everlasting Father, The Prince of Peace.' Isaiah 9:6 KJV

Merry Christmas Eve

2011-12-24T09:24:00.000-05:00

All things are Merry in the Henry house today. There is magic in the air, and no forcing the Christmas spirit. Everyone is looking forward to the next, exciting, days.

All of the gifts are wrapped.
Plans are set, including one party at my mom and dad's tonight.
Groceries have been bought.
Meals are planned.

The only thing we have left to do is to just enjoy each other, together, with all of the magic of Christmas floating around us.

Of course, I can't forget we still need to make fudge for the first time, and get that special photo of my kids in front of our Christmas tree. But we are going to do it with Christmas music in the background, and love in our hearts.

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Not Feeling So Festive

2011-12-23T12:11:00.001-05:00

I've been trying to force it, but that doesn't work. I am just not feeling festive this year at all. I honestly can't wait for the big day to get over with. Please don't read if you are in a good, Christmas mood because this post is full of bitter feelings.

Yesterday, I had my niece come over and we made some candy. It was going well until her friend stopped over with her two little girls.

One was 9 years old. It was so hard to see the difference, especially with all of the stress of adjusting to homeschooling, and fighting with the school, that we have been going through.

To see the ease in which she can do things, in which her voice comes out, was breathtaking. I sat and watched her play with some of Gracie's toys, but mostly her little sister played with them since she is too old for Gracie's toys.

I sat and watched them, especially the 5 year old, easily do what Gracie just can't do. They easily stacked those plastic ice cream cones, and matched the plastic candies to their colors and shapes. They dressed the magnetic people with proper outdoor clothing for winter or summer. They put the puzzles together and actually noticed when pieces were missing.

As I sat and watched, it just broke my heart. It has always been hard to see other kids easily do things that Gracie can't do. But to see them do things that she struggles with every day...to see them actually sort through her toys and to want to do these things, while I struggle every day to get a full minute of focus from Gracie, was just too overwhelming.

I ached for the ease in which they play. Oh to have those care free moments of just playing with Gracie...no struggles, no fights, no trying to get her to do just one more...just play, and fun, and easy. I ached for the moment I could look at her face and just see her imagination working, and hear her sweet voice say the cutest things.

It has been a long, long, time since I have felt this way. I know that these feelings will pass and I will drift back down into reality. I know that I love my girl more than anything, and that I will do anything possible to help her. I wouldn't trade her for the world, but I would love for some things to just be easier for her, and all of us. But I guess if things were easier, we wouldn't have learned as many lessons as we have.

Okay, I am done with the whining, and I'm off to hug, kiss, and snuggle with my sweet girl. She always makes me feel better.

The Merry Henry House

2011-12-21T21:22:00.000-05:00

Our triangle tree!

I tried to get creative while displaying my grandmother's, and great grandmother's, cookie cutters.

Christmas is just days away and I think we are almost ready. We still need to finalize our plans, and get our groceries. We also need to do all of our wrapping since we haven't wrapped a single present. I haven't even attempted to get a Christmas picture of the kids yet, and I haven't even sent out a single Christmas card. I think I'm going to have to scrap that this year, since I don't think they will make it out before Christmas.

Oh well, we are having a low key, stress free, Christmas. Just the way we like it!

An Eye Opening Experience

2011-12-15T19:03:00.000-05:00

Hank and I attended our first school board meeting last night. We had been hearing rumors that Gracie's school was going to let go at least 1 teacher and 4 parapros. There was also talk of consolidating classrooms.

What this boils down to, is that the teacher that Gracie had this year would be laid off. Then, Gracie's old class and another class would be combined. There would NOT be any additional parapros in the room. That's twice as many kids as what was in there before, with the same amount of paras and only one teacher. The staff to student ratio would be about 1 to 6. There would be 6 kids with feeding tubes, wheelchairs, standers, transfers, medications, and severe behaviors to only 1 parapro.

In a classroom that is already busy, not safe, with paras that are ridiculously overwhelmed, this would be a nightmare. Also, these changes would be made for next school year. That means, that Gracie's classroom next year will be much, much worse than it was this year. That means she will not be able to return to school next year either.

This is happening because someone messed up very badly and misplaced, or miscalculated, over $600,000!!! This mistake was made by the school board for the entire town, not just Gracie's special ed school. However, the only cuts that will be made are to the special ed school. The administrators at Gracie's school had to hire lawyers to get the school board to even sit down and talk with them.

Now, I have had my fair share of disagreements with the administrators at Gracie's school. However, this is not their fault and they are going above and beyond what they need to do to stop this from happening. The principal, the best one we have ever had, has even offered to take a large pay cut in order to stop this.

Nothing is set in stone yet, but so far this is the plan. I am flabbergasted at this. Other parents were at the meeting and a few spoke out to the school board about this. The only response they got back was "Thank you for your comments.". That's it. The parents went so far as to talk about fraud and a hostile environment for special ed, and they only thing they got back was a 'thanks, but oh well' kind of response.

I can't believe how this school year has played out. I never thought it would get this bad. I am at a total loss of what to do.

On a side note, I did see Gracie's former parapro that she had for two years. She and I talked a lot, but the first thing she said to me was that I am doing the right thing by keeping Gracie from the school. She knows the boy who hurt Gracie and has worked with him in the past.

She was angry when she found out what they were going to put this boy in with Gracie's class. She was also hurt by this boy a few years ago, when he was a lot smaller and weaker. He had pinched her arm so badly that he burst a blood vessel. Her arm was sore and swollen for weeks.

It was so nice to see her and to hear her say we are doing the right thing. I just have no idea what will happen next year. Gracie needs a school, yet she has no where to go. This is all so unbelievable...

Sweet, Sweet Moments

2011-12-13T16:04:00.002-05:00

Yesterday, I cooked Gracie her breakfast, just like I always do. She helped me for a few seconds and then proceeded to knock things over, turn the lights on and off, get things out of the fridge and the drawers. My kitchen looked like a tornado had hit by the time I was done making her breakfast, like usual.

She put the syrup on the table, I put her plate down, and then she sat down to eat. I turned around and was going back into the kitchen when I heard something.

"Thank you."

She told me thank you with her talker. We've practiced that a few times, but it was the first time she used it on her own.

I love that sweet baby girl!

Let Me Try Again...

2011-12-12T14:43:00.000-05:00

I have about ten different post that I have started, but I haven't finished them. I even started writing this one once or twice before I posted it.

This homeschooling stuff is hard.

I love doing the planning, and searching the internet for activities. I love making the games and putting things together for us to do. It's been fun, being creative. This is the easy part.

Getting Gracie to do stuff for me is the hard part. It is impossible. I have all of these learning activities planned for us, but she just won't do them. I am lucky if I get a full minute of her cooperation before she is done and ready to get up and run around. I try to do things that she can do hands on, but that doesn't last long either.

She is tired of being in our house, she is tired of the activities I have for her, and she is tired of me. She wants to go anywhere I will take her, as long as we get out of the house. She will go anywhere with anyone just to get out of here, and away from me. She gets miserably bored, but can't focus on anything to keep her busy.

Despite the difficulty, I am finding out things that she knows. I am sure she knows almost every letter of the alphabet, and all colors. She can sort way better than I ever knew, and she can match identical objects. We've started doing shadow matching games and I am surprised at how well she does. It's just hard to do in one minute increments.

She needs to be in a school, but she continues to make it obvious that the class she was in scares her. Over these past few weeks, I have taken her to the school for her OT and speech therapies. The first time I took her for OT, she knew that she would have to go past the classroom to get to the OT gym. She refused to walk into the building, or down the hallway, past the class. I had to carry her and try to get her to walk. Once we got past the classroom, she walked like normal and was excited to go work with the OT.

Every time I tell her she needs to go to the school, she repeatedly tells me she wants me to go with her.
She will point to me and whine, over and over again, making it clear that she wants me to go with her.

I have been thinking that once Christmas break is over, I am going to look into the schools some more. We have a local charter school, and I have one other class to look into. The lawyer we talked to is writing a letter to the school and asking what types of things they are going to do to make the classroom safer. She thinks that they may tell her much different things than what they have told us.

It has been hard, dealing with all of this and I think it is finally catching up to me. It's hard, to deal with the emotions of not being able to meet all of her needs. I can't help but feel like I am giving in, and failing, when it comes to homeschooling her. I want to homeschool her, and I am glad for this chance I have had, but it isn't right for her.

Special Moments

2011-12-05T23:05:00.000-05:00

For the first time tonight, I read stories to Gracie until she fell asleep. I have waited so very long for her to like stories read to her. In all honesty, I never thought she would like it. I had given up on that dream, but I am so very happy that it came true.

When I started this blog, it was mostly for me. I wanted a place to write my feelings out and to keep a journal of our life. I never expected to create such wonderful friendships, and I never expected for Gracie to inspire and touch the lives of others.

Someone from Keith Urban's fan site found my blog. She shared some of the posts that I wrote about how special Keith Urban is to us, and how much he has inspired Gracie. He has changed her life in remarkable ways. Go HERE, or HERE, or even HERE to see how much we love Keith.

I was so very touched, and surprised that someone found our blog and was so moved by Gracie's story that she shared it with his whole fan site. I never expected anything like that when I first started this blog.

A few people left messages about how they loved Gracie and how they loved her story. Our blog had almost a thousand visitors on Sunday when we usually stay under 200. I never expected anything like this to happen. I must admit that Hank and I got excited and talked about meeting Keith Urban some day and being able to tell him how he has helped Gracie. Maybe someday...Go HERE if you want to see her post and the messages.

Finally, the last special moment I want to share is that while hunting with grandpa, Caleb got his first deer. (Sorry to all you non-hunters!) He was so excited and I am very proud of him. He loves being an outdoorsman and doing stuff like this, and I am happy to see him be so excited and proud of himself.

Gracie's New Wheels

2011-12-03T11:27:00.001-05:00

Gracie got her new set of wheels yesterday. She was so excited that she was running around the house and bouncing off the walls.

I love it. I think the fabric is perfect, even though I couldn't pick it out. I have to admit I am a little jealous. This stroller cost more than what my van is worth. I want a new set of wheels too!

We can hardly wait to try it out!

Not a Total Fail

2011-12-01T08:34:00.001-05:00

Yesterday was our first snow day of the school year. Caleb was so happy to wake up at 5am when the school's call service phoned to inform everyone that school was cancelled. I was not so happy to get the call at 5am. Really, 5am! I think that is totally ridiculous. I am fully capable of turning on my TV, or computer, and looking up the info at a more reasonable time. There is no reason for them to call at 5am.

Once we were awake, there was no going back to sleep for us. It was too close to our regular wake time, and Caleb was too excited about the snow and the surprise day off from school. I was too angry to be able to fall asleep.

Luckily Gracie had a respite worker coming at 9am. While she kept Gracie busy, I scoured the internet to find lessons and file folder games to make for Gracie. I saved them all on a flash drive and then Caleb and I went to the library and printed everything.

We then went home so I could put everything together, and assemble the file folder games. I was so happy about how they turned out, and was so excited about doing the activity with Gracie.

Well, she hates them. She won't even look at them. I made four file folder games and she hates them. It took hours to find the stuff, go to the library to print them, go back home to put them all together.

However, I am not considering this a total fail. I figured out a few things that will work that I am really excited about. The best thing is that I can use plain white paint chips to glue our papers to. This makes them last longer, and is free. I don't want to drive 40 miles round trip to take our stuff to a place to get them laminated. It saves lots of time and money. I just hope our hardware store doesn't get wise to what I am doing!

I also got to spend some time alone with Caleb. We went out to eat for the first time in months, just the two of us. That makes everything all better.

It's Here

2011-11-29T23:47:00.000-05:00

Winter hit mid Michigan with a heavy blow today. We've had a mild fall but things changed today.

On the way home from Gracie's therapy, we had wind and ice. The roads were horrible and I was so happy when we finally arrived at home.

The snow started a couple hours later. We now have more than six inches of snow, with ice underneath. We have a winter storm warning until 9am tomorrow morning. Caleb went to bed planning on a snow day tomorrow.

Cabela liked the snow earlier, when there wasn't much of it. Now that the snow is almost as deep as she is tall, I think she feels differently. She has to hop over the snow in order to get through and she comes in soaking wet with snow balls stuck all over her. Of course that makes her hair mat and she is just a miserable mix of snow balls, wet matted dog hair, and sad puppy dog eyes.

She's in full panic here!

The poor thing...

P.S. I've been having problems with blogger. I haven't been able to post comments on other blogs and I have to keep signing in and almost didn't get to publish this post. Anyone else having problems? I have been hoping it would just magically go away.

Overwhelmed

2011-11-28T17:42:00.001-05:00

I am so overwhelmed.
I can't seem to get our homeschooling onto a schedule and I feel very unbalanced because of that.
I also don't have the things I need in order to provide Gracie with the best learning environment.
The things we do have are all unorganized and scattered around.
I don't have a safe place to put things, so Gracie is getting into everything and spreading it through the house.
On top of trying to get the homeschooling into a routine and organized, I have let my house fall apart.
I have been needing to pay the bills since last week.
Our laundry situation is stalled because I haven't finished taking care of the clean stuff since the last time I did laundry.
I have a load in the dryer and one in the washer.
We are in desperate need of groceries and I haven't even planned the menu for this week yet.
I have a sink full of dishes.

AHHHHH...I need a break!

Seriously, I have found a few great ideas on Pinterest that I want to do with Gracie. I am in love with file folder games right now. They are so easy to put together, and so cheap. I just bought some file folders from the dollar store but I still need to get the things printed and then put together. I don't have a printer so I have to do everything at the library, which takes extra time that I don't have right now.

Here are a few that I am planning: (Visit my pinterest page to view the awesome blogs that these are from)

Here we will count the number of holes on the apples, then put the correct number of worms on the apple.

Here Gracie will sort the apples by color

Here Gracie will match the color chips to the color chips that have been glued down in the file folder. We actually made this game, and Gracie is doing a great job with it.

See how cheap and easy these are?!?!! Gracie learns much better when she has manipulatives!

I have also found a few really great games to make and play with her. I love how easy these are, and again, how cheap they are. We go through activities so quickly that we need tons, and this allows us to do that.
I am planning on making these for us to use: (Again, check my pinterest page for the great blogs these are from)

I am so thankful that I am able to use the Internet and all of the free homeschooling blogs and teaching sites I have found. There are tons of stuff that is free, and that is what I can afford!

I am also so thankful to be able to stay home and do this for Gracie. I am so sad and angry that she can't go to school, and for the way the school has handled what happened to her. But, at least I can give her what she needs and keep her safe.

Having a clean house, clean and folded laundry, and well planned meals, will be possible again soon enough. For now, there is so much on my plate and I am just trying to do the best that I can.

Black Friday

2011-11-25T11:12:00.000-05:00

Because I shop all year long for Christmas, I am almost done shopping. I find good deals on things that I usually get for the kids, and just save them in my closet until Christmas. I can usually predict what size clothing Gracie will be wearing by then and I buy whatever I find on sale and put it away. I also keep my eye open for anything that Caleb is interested in and I usually have a good supply by Christmas.

This way of shopping allows us to actually have a Christmas with gifts under the tree. I wouldn't be able to buy everything at once and need to spread it out over the year in order to afford things. So far, this works well for us.

As Caleb gets older, he gets more interested in the higher dollar electronic toys. It's getting harder to buy through the year for him. I was waiting until black Friday to see if the things he wants would be on sale. Thankfully, I found a great price on exactly what he wants.

I found a half off sale for this Cabela's Big Game Hunter 2012 and was so excited.

I also found this Survival game for half off. I think he will love this game as well!

However, I do not enjoy going shopping on Black Friday for specific things. They never have the items that I specifically want and I leave angry and disappointed. I was trying to talk myself into going to Best Buy and waiting outside for the doors to open at midnight. I was trying to tell myself that the 50 mile round trip would be worth it and I was sure they would have these games. I couldn't just pass up these great deals and was feeling guilty for not wanting to go out.

I decided to check on line before I left to see if they had the sale prices available to buy online. They did! They also had free shipping! I saved myself a ton of trouble, gas money, and sleep, and bought them online!

As usual, when I get great deals like this, I feel like it is too good to be true. I am keeping my fingers crossed and hoping that it does actually work out and they will arrive on my doorstep in less than two weeks!

Giving Thanks

2011-11-24T20:03:00.000-05:00

I hope every one of you had a wonderful Thanksgiving! I hope this day brought you good times with your family and some wonderful food.

We had a great day with our family. We have so much to be thankful for and I love taking the time to appreciate everything in our lives. We are so blessed...

It was a great day, but I really missed Caleb. I can't wait for him to get home. One more day...

The Next Level

2011-11-23T13:09:00.000-05:00

This morning, the bus pulled up to our house to get Gracie. There was a substitute bus driver and she didn't know that she wasn't supposed to pick Gracie up. Of course, Gracie saw the bus and she wanted to go to school.

I know she wants to go to school. She wants to be around other kids, the ones that are nice to her, and the ones she has been with for years. She wants to see her favorite teachers, the gym and music teachers, and the occupational therapist, whom she has been with for years.

She wants to get out of the house and to have fun and to be around kids. I don't blame her. I want that for her as well.

It broke my heart and made me angry all over again.

It also made me very thankful that I have made moves to put a stop to what is happening in her classroom. I finally found an organization to file a report with. Not only did they take my report, they gave me good advice and also took this to the supervisor.

The supervisor then took it to their legal team. The legal team agreed that something needs to be done and have agreed to investigate our case.

Next week, I will sign a retainer for an attorney, and a release of information for the school so that the attorney can access everything pertaining to our case.

I am relieved that this is now in the hands of someone who is going to do what they can for the rights of all the kids in that classroom, as well as for Gracie's rights.

If things change in this room, I may think about sending her back to school. It will depend on what changes are made, how they respond to me starting this process, and if the class will be safe and a proper learning environment for Gracie.

I also don't want this classroom to be continued next school year, because Gracie won't be going to school then either. She needs to be in a school. She wants to be in a school, and I am trying to do what I can to make that happen for her.

I held a conference call yesterday with two people from a different school district. They outlined the things that I need to do to try to get her enrolled for next fall. I am thinking of doing this process so that if nothing changes in this room, and they want to have the same room next year, then I will want her to be able to start at the other school. It is almost impossible to make this happen, but I have dealt with impossible before.

Thank you to all of you who left comments and gave us your support. It has helped tremendously, and also prompted me to continue this fight. I don't think I would have kept going if I didn't have you guys and your words of wisdom. Thank you.

Trailer for Zach Anner's Show on OWN

2011-11-21T15:50:00.000-05:00

Official Trailer: Rollin' With Zach

Zach Anner is obsessed with travel. In Rollin' With Zach, he takes an authentic and often humorous approach to seeing the country, as he hosts his own half-hour travel series. Zach may have cerebral palsy, but that's never stopped him! In every episode, Zach explores a new city and conquers his "top five" list for the destination.

In season one of Rollin' With Zach, he travels from coast to coast, visiting Los Angeles, Chicago, New York, San Francisco, Las Vegas and Portland. Each episode is filled with humor and emotion, as Zach meets new people, indulges in his favorite treats, and attempts new and exciting experiences he never thought possible! From surfing to sailing, rock climbing to water-skiing, he challenges himself to try the unexpected, and at times - the seemingly impossible. And when things don't go as planned, Zach embraces the problem with his sharp sense of humor and a positive attitude, because travel is an adventure and sometimes you just have to "roll with it!"

Rollin' with Zach will premiere with back-to-back episodes beginning Monday, December 12 from 8:00 - 9:00 p.m. ET/PT.

I can't wait to watch this show!

A Nice Surprise

2011-11-20T08:41:00.000-05:00

It's been a crazy weekend here in the Henry house. Hank has been working a lot of hours and I have been busy taking care of Gracie and trying to be her teacher. Caleb left to go to deer camp with my dad, and unlike last year, Hank stayed home.

Since the IEP meeting this week, Hank and I have been trying to put it all together. We are still spinning with everything that happened and trying to figure out what we want to do. Hank is furious and wants to meet with them again, just so he can feel that he did everything he could. I think we should not even bother to meet with them again, because they are just going to twist it even more to prove that they are right.

In all the years in dealing with the school, I never thought it would get this bad. Thank you to all of you who offered your support through this, and thanks to Lisa for giving me the name of the lawyer. I can't imagine having to deal with this without your support!

We went to the school for her first hour of speech therapy. It went well, but I sure felt uncomfortable sitting in the hallway and seeing all of these people. I saw all three paras from Gracie's room. One said hello to me before I saw her and the other two didn't want to speak to me at all. I looked right at them and said hello so they had no choice. I don't blame them for everything and I still deserve to be treated with respect.

On to better news...Gracie and I had a really good day of homeschooling on Monday. She did an amazing job and I think we finally figured out ways to make this work. I feel much better about the homeschooling than I did the first week.

I have written out some plans and made some goals for Gracie. I have come up with a routine and activities to keep us busy and to keep her learning. I have planned a reward system and a time out system. Now all I need is a printer so I can print the reward charts and worksheets for us to work on.

I still don't think it is what Gracie truly needs, but I know I am doing what is right. I am doing what she needs, by keeping her safe, and by teaching her that she deserves to be treated with decency and respect. I want her to know that it is not okay for her to be treated badly at school.

After this busy and mentally exhausting week, Hank and I were ready for some time off. He has been working six days a week and was feeling really burned out by that, on top of the anger he feels toward the school. He called his mom and asked if she wanted to watch Gracie for a few hours and she asked if Gracie could stay the night with her. We did not expect this, but what a welcome break she gave us.

We truly enjoyed our few hours of freedom and are refreshed to start again. Gracie will be home soon and she has a respite worker coming later today. I think I just may ask Hank take me to a movie...

Nerves

2011-11-15T07:06:00.000-05:00

Tomorrow is Gracie's IEP meeting with her school. To say I am worked up over this meeting is an understatement. My mind keeps replaying the whole school year, including the incident when I pulled Gracie from the school.

Usually, when I write things down, I feel better. However, this time I have a lot of things written down and yet I am still spinning. I am going to try to write some more things today, in between working with Gracie on her lessons and making phone calls.

I have been trying to talk to someone in the special education department from our local public school. I want to discuss the MiCI classroom, and later view the room. I don't think they will be able to meet all of Gracie's needs, but I just need to see this to be sure. I still think she needs to be in a school, and I need to check out all of our options. However, I can't get anyone to call me back.

I also need to register as a non-public home school with the state of Michigan. I have been putting this off in hopes of Gracie being able to go to the MiCI room. In order for her to be able to stay in speech and OT, I have to be registered. I also want to keep her in gym and music classes and I need to be registered for that as well.

When I talked to the superintendent, she tried to tell me that Gracie's services will be drastically reduced and I know that is not true. It is required that she be given the same services as if she were a public school student. Also, she tried to tell me that only high schoolers could take elective classes, and I know that is not true as well. The rule states that non public homeschoolers can enroll in elective classes, and it does not specify if that is only for high school.

What keeps making me frustrated is the fact that not only are they wrong in what they have done this school year, they are going to make me fight for what Gracie is legally allowed. It is unbelievable to me that they are going to continue to act this way. What I want from them is to stand up and give us what the law says, and not lie about it.

What also makes me frustrated is the fact that here I sit, losing sleep, over the school yet again. This morning is the first morning that Gracie has slept in in a very long time, and I have been awake for hours. UGGH! I totally blame them for me not being able to sleep!

Looking for Stars

2011-11-11T09:17:00.001-05:00

My Stars...

Right now, all I feel like is one big problem solving machine. So much more has been added to an already overflowing plate. Things that are beyond my control. Things that I have to try to figure out and solve.

I read this quote years ago, and for some reason, I keep repeating it in my head:

"When it's dark enough, you can see the stars."

I don't know who wrote it or where it came from, and I am too tired to look it up. All I know is that I am getting strength from it, and I am looking for those stars.

When It Rains...It Pours

2011-11-09T21:35:00.000-05:00

This has been a very rough week. Gracie and her school issues have taken a back seat to a mental health crisis in my family. I have some extended family who are very close, and are involved in our daily lives, who are struggling with mental health issues. Tonight, it lead to a crisis.

It's pretty sad when someone has a mental disability and people tell them that they are just doing things to get attention, and that they don't care what happens to them. It makes me irate when people think they have all the answers, yet have never spoken with a doctor. It's unbelievable to me when someone blames another for the mental health disorder. It breaks my heart when I see someone devastated, crying, and wanting to end their life because of what someone said.

I had a very rough conversation with someone who thinks they know everything. I got nowhere, and only ended up getting myself hung up on. I can't believe how some people can't think beyond themselves, especially when another is sitting in a hospital.

It's okay if they have questions, and maybe have a hard time believing the disability exists. However, you should at least support the ones you love, the ones who are doing everything they can to help this person. Most especially, you should not say hurtful things, and you should not continue to mess with someone's life. Either be supportive and involved and understanding, or stay away.

I know I've been vague, but I hope at least this makes sense. I just want to respect the privacy of the ones I love. Please pray for peace and understanding for my family. Please pray for my mom to get some rest and support that she needs. She is doing everything she can to help this person and lots are judging her for it. She's feeling the hurt from that and it's bringing her down.

I really wish people would know that you don't always have to agree with everything that your loved ones do, but at least be respectful and support of what they believe in.

Getting Started

2011-11-06T20:13:00.001-05:00

I need to say thank you to all of you for your support. Back when I started this blog I had no idea that I would make such good friends and get so much support. I am so thankful for each and every one of you!

Tomorrow, I will be calling the Board of Education and registering as a non public home school. I will also be reporting what happened to Gracie in the room, and all about the other things I have seen too.

For the past few days, Gracie and I have spent a lot of time together. She has been watching movies, and just hanging out at home. We have gone for walks and read a lot of books. We've also gone to the library and got a few books about Thanksgiving.

She has been going to sleep every night since I told her she is all done with school. I do believe that she was having trouble because of the room and how she was being treated.

I plan on starting the academics very slowly. I think we need some time to adjust to this new way of school, and as one of you wrote in comments time to "unschool". I think this month we are going to just focus on Thanksgiving, take it easy, and see how it goes.

We have done few academic activities. We have worked with letter and number recognition and have done color identification. She knows all of the basic colors and I think all of the letters in her name. She isn't very interested in doing this so I have to be creative to get her interest.

When I ask her what G R A C I E spells, she will point to herself. I started asking her what M O M spells and taught her to point to me. She can now do it accurately almost every time. I also do this with dad and dog and she is pretty accurate with this as well.

I need to find some charts, or create some of my own, so I can have good records. I want to get very good assessments about what she can do, and I want it all documented. I don't want to go too fast for her, but I also don't want to hold her back.

I have found some good websites with free home school printables, and I will be looking for more. I also hauled out some of my old teaching supplies and resources. (It was fun to go through that stuff and remember a different time in my life.) I also shopped the dollar store and got some activity books.

I do think the shock and adrenaline are wearing off and reality is setting in. I am worried that I won't be able to keep this up. I'm not sure I can be everything she needs me to be: her mother, her advocate, her case manager, and now her full time teacher.

I never thought we would be in this position, but here we are. I plan on doing the best job that I can. At least I know it will be better than being in that classroom!

Last School Post

2011-11-03T12:25:00.001-04:00

I have now talked with everyone I needed to, and it is a done deal. Gracie will either be home schooled or will be going to a totally different school. We have her IEP scheduled in two weeks and we will keep that meeting. Gracie will transition off the IEP at that time and will be put onto a non public home school plan.

I am so glad the phone calls are over. It was ugly and there was some yelling, on my end. I was accused of setting the staff up and not being open with them. I really opened up then and told her everything I felt. I must admit, it felt so good to let it go and tell her everything I felt.

Now that I have talked to everyone, I want to share what happened in the room. I think writing this out and sharing it with my blogger friends will help me to stop replaying it in my head. I haven't slept in two days and am feeling exhausted.

The day was not good at all. The boy with the violent behavior was out of control. He hurt three other kids and nothing was done. When I told the teacher about something he did to a girl, I was told the girl is over reacting and is a hypochondriac. I saw what happened and I know it hurt the girl.

The staff really doesn't know how to handle him and they need training. He needs intensive help. The school administrators should be ashamed of themselves for letting this go on.

In the classroom, there is a little padded room in one corner. The kids can go in there when they need a break or just to take a rest. Gracie liked to spend a lot of time in that room and went into it the day I was there.

I tried to get her to come out and eat her lunch but she just wouldn't come out. After several minutes, I thought she may come out if I moved away from the door. Every time I looked at her she started to pucker up and kept signing Grandma's house, over and over again. I couldn't leave her when she was acting like that so I decided to stay and see what happened.

I walked away and started playing a game with another student. I noticed the child with the violent behavior hanging out by the padded room. Every time I looked at him, he would see me look at him and walk away. I had seen him be sneaky like this before so I knew to keep my eye on him.

I turned away for just a couple of minutes and when I looked back, the kid was gone and the door to the padded room was shut. I panicked.

I ran to the room and pulled open the door. He had hold of Gracie's wrist in one hand and with his other hand he was twisting her fingers really hard. He was hurting her.

I yelled no and told him to let go as I grabbed Gracie and dragged her from the room. Not one other adult in the room was aware that this was happening. When they saw me yell at him and pull Gracie from the room, no one said or did anything. They were going to just let him get away with this.

I felt sick and was cold all over. At this moment, I knew we were done with the school.

I think what bothers me the most is just how sneaky he was. He knew what he was doing, and he planned it. He was watching and waiting for her to be vulnerable and then he acted. Then he shut the door so no one would see. When I think about this, I panic and wonder if he had done this to her before. Had he done other things to her too?

Last week, she came home with two marks on her wrist. They looked like she had her arm stuck in something and they had to pull it out. One spot was open and bleeding. They did not send an incident report home, and when I called to ask what happened they didn't know. I had thought she got her arm stuck when she was sensory seeking. Now, I wonder if the kid did this to her.

A couple weeks before this, she had come home with a similar mark on her arm. It wasn't as bad, but again, no incident report and no one knew what happened.

There was no way I was going to send my child back to this room. I am sick to think that she believes it is okay to be treated this way because I kept sending her to school and this is what happened. She is totally defenseless and this boy and he knows it.

The staff is so overwhelmed in this room and there is no way they can watch Gracie like she needs to be watched. This boy does not have his own para and is free to do these things with no consequences.

I can't believe the peace and relief I feel now that Gracie is done with this classroom. I didn't realize the amount of stress I was carrying around about this class. What's even better is that I think Gracie feels the same way.

Some of her behaviors that we have been dealing with are gone. She is not fighting me to get dressed anymore, and she seems more relaxed and happy. As of last week, when she came home with the marks on her wrist, she had trouble going to sleep. Since I told her she was all done with school she has had no troubles. That could be a coincidence, but I am choosing to think it is because she feels relief..

This is the last post I will write about this school. We are done with them and it is going to be put behind us. I am so happy to say that and feel so much relief!

Hitting the Brick Wall

2011-11-02T16:32:00.002-04:00

Yesterday, I hit the brick wall regarding Gracie's class.

It was a horrible day in the room and lots happened. The violent child I have been worried about actually did something to hurt Gracie. It was minor but it could have been much worse. I am so glad I was there because no one else saw what was happening. I can't share the details but trust me that it was bad enough that I pulled her from the room.

I took Gracie home with me. She is NOT returning to this class. There are way too many things going on in this room that I can't live with. Right now, my plan is to look at the mildly cognitive impaired classroom and see how that would work with Gracie. This would take her away from the school that she is in now and put her back in our town's school. I'm worried about the amount of support she could get and I don't think it would be enough. I'm going to call and set that up tomorrow.

If that does not work out for her, then I will home school her. I don't think that is the best option for Gracie, but I know she will be safe this way. I am not going to send her to school and just hope that she doesn't get hurt. I would not be able to live with myself if she got hurt at school because I kept sending her there.

I actually felt a lot of peace when I finally made the choice of not sending her to the room again.

More Than I Thought

2011-11-01T21:42:00.000-04:00

Here we are, five months into having our respite services, and it is going so very well.

We have a wonderful group of ladies who come and work with Gracie. I seriously love each and every one of them. They each have their own styles, and their own ways with Gracie. Of the four of them, we cannot pick a favorite.

What's even better is that Gracie loves all of them too. She always wants to know which one is coming and she waits for them all day long. She loves going places with them and reading books with them.

They take her to lots of fun places. Stores, parks, McDonald's, and the library. They work with her on following the rules, and on proper behavior while in public places. They are working on some basic life skills such as going to the store for a few items and using her talker.

I wish we had started this years ago. It has made such a big difference in our family life. Our respite ladies have changed things for the better, more than I thought was possible.

It's Here!

2011-10-31T09:04:00.000-04:00

Happy Halloween!

My Other One

2011-10-28T13:47:00.000-04:00

I think it is time for an update on Caleb, don't you?

Everything is going so well with him. School is good and he got four As on his mid terms. He likes most of his teachers, all but one. He doesn't like her because she screams a lot. He doesn't get along with screaming teachers. I don't either. He does not have much homework at all, and so far, almost NO math homework. That makes us very happy since the last two years have been hell with the math homework.

He has been leaving me every weekend to go spend time with my dad. They have been hunting and working outside a lot. My dad bought him a new bow and he has been doing a ton of practice shooting. He is a really good shot and has actually hit an arrow that was already in the target, kind of like Robin Hood =).

It's been really good for him to spend this time with my dad. Before he was doing that, he was so bored and grumpy every weekend. Hank has been working six days a week and I was trying to find things that Caleb could do with me and Gracie. I miss him every weekend, but I love that he has something to keep him busy, and am thankful to my dad for all he has done for him. He is one happy boy, getting to do things he loves, with such a great grandpa.

He was sick before all of us were, and he had to wait two weeks to get his flu shot. He also had to get the varicella shot, but that has given him a weird reaction. His arm got read and swollen and was hot to the touch. It hurt him to use it so we went back to the doctor. The next day, the red spot was swollen to twice it's size. Thankfully, all he needed was some benadryl, Motrin, and ice packs.

This weekend, we are having a big bon fire and a hayride, courtesy of grandpa! My dad and Caleb have been working hard on cutting wood and hauling brush and this weekend will be the pay off. He is having some friends over and we are looking forward to a great time.

I am hoping to make some fun Halloween treats for the kids. How does "armpit hair" and "bones and blood" sound to all of you? I found some really good ideas on PINTEREST and can't wait to try them out. I hope the kids are not too grossed out by the names to eat the treats!

I hope the weather cooperates with us. I haven't spend much time outside this fall because of how sick I have been. I also haven't taken any fall pictures of the kids and I am hoping to do that this weekend.

Have a great weekend!

Confused Much?

2011-10-27T09:21:00.000-04:00

I must admit, I am a little confused about Gracie's classroom. After last week's experience in the room, I was ready to pull her out and homeschool her. After being in the room this week, I feel a little better about things. These ups and downs are driving me totally crazy!

The class is not perfect. Far from it.
I am still concerned with the aggressive kids in the room.
I wonder about the paras and their roles in the room.
I do not think there is much time for academics when the teacher is constantly dealing with behaviors and I worry about how much Gracie will learn this year.
I worry that she is not getting enough supervision.
I worry about how alone she is all day and that she seems lonely. I don't see much interaction with the paras or other students.

So, there are lots of worries.

However, the class did seem calmer this week.
Things seemed to flow much better than they have in the past.
The kids seemed to have settled into their routines.
I think the teacher stays on top of things and works very hard to keep the class running.
I think she is spread too thin and needs a lot more support.

These highs and lows about the classroom are exhausting. I am trying to remain hopeful, but it seems very unstable. Any one little thing could topple my tower of hope and shatter it on the floor.

My plan is to stay calm and hopeful. I am going to continue to work in the room and get to know the teacher and the paras better. I know one of the students with behavior issues is leaving and a new para will start soon. I have hopes that things will only get better.

Defiance

2011-10-26T08:52:00.000-04:00

This girl amazes me beyond belief.

I have waited about 8 years for her to be able to tell me no.

This is how she does it.

She crosses her arms and gets the most defiant look on her face.

Sometimes it's just a simple no, an answer to a question.

Other times it is pure defiance.

Even though the latter makes me frustrated, I can't help but think she is so darn cute when she does it!

Reminds me of when Caleb was so little and would try to tell me no, while shaking his little finger at me.

Go HERE for more Special Exposure Wednesday

Yucky

2011-10-25T09:03:00.000-04:00

That's my mood: Yucky.

I have been fighting a nasty sinus infection since last week, and today I still awoke with a nasty sinus headache and no energy. I am soooo tired of feeling sick. I hope this goes away with this round of antibiotics...

Hank has been sick with the same thing. He seems to still be fighting it too.

We are just waiting for Gracie to start a cough and runny nose, then I will haul her to the doctor right away.

The school situation is the same. The other mother I talked with found out not so good news from the agency that she contacted. Our only option is to prove to the school that our children have regressed dramatically from being in this classroom. We have to prove this, with written reports, etc.

Basically the school knows that they can get away with this and that there is nothing we can do.

I've been trying to wrap my brain around some other ideas to fight this, but with being so sick I haven't come up with anything.

Today is my second day of going to the classroom. I really hope it goes much better than last week.

The Haunted Henry House

2011-10-22T13:47:00.001-04:00

Halloween is the best time in our house. We love to go all out when decorating the house. In the past years, we have stayed with cute Halloween themes. This year, we wanted to go more spooky with a touch of gore. While watching a Ghost Hunters marathon, I finished our decorations.

This weekend, we had plans to go to the annual Boo in the Zoo and the pumpkin patch. However, I have been really sick with a sinus infection so I have been doing nothing but holding down our couch. Hopefully, we will have good weather next weekend so we can do some fun Halloween traditions.

Do any of you have some Halloween decorations to share?

Volunteering, Part 1-What I Saw in Gracie's Class

2011-10-19T10:26:00.002-04:00

I volunteered in the classroom yesterday. It was the first time I was there with approval.

Here are my observations:

Gracie laying on the floor of the horse barn, in the dirt and no one making her sit in a chair. Para wanting to leave her there for the entire horse riding time. When I explained that if she wasn't going to ride the horse, then she should go back to class, and para acting like I was being crazy. (What's more important, Gracie laying on the horse barn floor, or being in the classroom where she should get learning time?)
Gracie having to miss horse riding time because of para and parent talking and laughing right next to her. (The last time I was there I explained how Gracie is sensitive to the laugh of this mother and that is why she was dropping. I guess they forgot about that.)
Screaming so loudly I could hear it outside by my van.
Slamming tables
Shaking tables
Cups being repeatedly slammed onto tables and no one stops it
Gracie with her hands over her ears, the whole time
Gracie's personal space being invaded
Gracie's lunch being stolen, handfuls at a time, and no one noticing
Gracie's cup not working, therefore she couldn't get anything to drink. All day.
Gracie, with her auditory sensory issues, being put next to the loudest child in the room.
Paras not noticing when a child went to OT, then 10 minutes later asking where that child was
The paras not being able to take care of more than one child at a time. It they are working with a child, they totally ignore what else is going on in the room.
Not making children follow through with rules

At one time, there was only one para in the room with me, the two most violent children and two girl students. The para walked out of the room for a few minutes, totally leaving me alone with the kids. She did not tell me I would be in charge, and she did not make sure the teacher was in the room. I suspect she wasn't aware that we were alone in the room and that she would have left the kids alone if I wasn't there.

The teacher taking Gracie potty and not paying attention to where her hard plastic fidget toy ended up. It was stuck in her diaper, in between her legs, in a very delicate area. (No one notices that her heart fidget toy is missing, except me. I thought it was stuck in her shirt and sadly waited until a more appropriate time to take care of it. When it was time for recess, I pulled the string to get it out. Gracie made a grimace of pain, and that is when I discovered where it was located.)

Gracie not wanting to go to school today, and asking me to go with her.
Me talking with another parent, who was attacked by the most violent child (who weighs about 50 pounds more than our children), and then the violent child went after her child.

Now, please imagine this is your child, and tell me how you would feel.

(I know that all kids need, and deserve, an education. However, I think putting kids who are violent, in with kids who are not, is not creating an appropriate learning environment. This class needs to be split into two different classes. ALL the kids would benefit from that. The kids who are violent would then be getting more of the help and attention they need to succeed. The other kids would then be safe, and have an appropriate learning environment.)

Halloween Past Picture Overload!

2011-10-17T12:30:00.000-04:00

I am a little tired of writing about all of our problems, so I thought it would be fun to share some pics of Halloween past! I had so much fun looking for these pictures, and they bring back great memories. That's much more fun than writing about my problems.

I hope you enjoyed them!

It's All Good

2011-10-14T17:00:00.000-04:00

I've been trying to write this post all week, but I am struggling with it. Instead of telling every little detail, I am just going to say that all is well with the school. I met with the teacher this week, as well as the advocate and the superintendent. I watched the videos of Gracie in school and I saw some of the changes that they have made to make the class safer. The will be adding a new papapro to the class in early November and I think that will help a lot.

I settled things with the superintendent about me being in the school. I will be going in once a week, to help out at recess time and some class time as well. This will give me the chance to get to know everyone better, and for me to see with my own two eyes just how Gracie is doing in the class. I do not think I will ever be kicked out again.

The biggest things are that Gracie is happy in her class and she is doing well. She is wanting to go to school now, and that is a great thing!

I feel that she is safer because they now know just how quickly Gracie can put things in her mouth, and they know more about her limited safety awareness.

I think everyone has settled in and is getting used to this new, very different, environment. The teacher and paras are working well together, and I think the class has calmed down.

Finally, I am relaxing a little and feel so much better sending Gracie to school!

Some Family Halloween Favorites

2011-10-12T20:52:00.000-04:00

Caleb and I started a tradition of watching Arachnophobia every Halloween. It is a good, family, fun movie with little gore. It will most definitely make you not like spiders, even fake ones. You may even have nightmares about spiders. Just sayin'. Caleb and I like to play a game during this movie. We try to see if we can hold a plastic spider in our hands during this movie. Neither one of us can make it through the movie while holding it!

We also have lots of fun watching Ghost Hunters. Caleb used to sit on my lap while watching this!

Love, love, love, love this movie! I'm so excited now that Gracie watches a little of this movie!

Of course Gracie's favorite movie is Barney Halloween!

Finally, we have been enjoying the Goosebumps movies. Caleb claims to not like them anymore, but he watches them a little. Gracie is kind of liking them, so we keep trying.

Do any of you have favorite Halloween movies? We need some suggestions of scary movies that do not have lots of gore and violence.

Feeling Stressed

2011-10-10T13:13:00.000-04:00

This morning, getting Gracie ready for school, I had some bad moments. Definitely not my best parenting moments.

Gracie's behavior is getting worse. I can't get her to do things that she needs to do. She can't dress herself, so I help her. However, she fights me every step of the way. The same with her AFOs, her socks, her shoes, brushing her teeth and hair, her jacket, her bus vest, her helmet and her medications. Every morning, we fight.

Yesterday, we went shopping for a winter coat for her. They were having a very limited sale and it was the only time we could get this done. We are one income family, with overdue bills on our counters, so getting a good sale was a necessity.

However, Gracie fought us every step of the way. She has grown so much, that I didn't know what size to get her. We needed to try a few on. She threw herself on the floor, and would not get up. She rolled over onto her stomach, or crossed her arms, so we couldn't get the coats on.

I just don't know what to do with her. Time outs do not work, however I don't know what else to do. I can't take things away from her because she just doesn't care about anything enough to make it matter. I praise her good behavior all the time, and always have, but it isn't enough.

Disciplining Caleb is a piece of cake compared to disciplining Gracie. With Caleb, it just comes naturally. He understands rules and consequences and what he needs to do. Gracie does not.

Also today, I am meeting with Gracie's teacher. We are going to watch videos that she took of the classroom, and have some discussions. I am feeling really stressed about this and can't wait to get it over with.

Tomorrow is a meeting with the superintendent and the advocate. I can't wait to get that over with also.

I am not in a good spot right now, and just want to take my family and run for the hills! I know I have to handle this, and I will, but I sure don't want to.

The Most Perfect Poem

2011-10-08T06:32:00.002-04:00

I found this amazingly perfect poem on Facebook and had to share. I think this is the best poem I have ever read.

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Written by:

Tricia Proefrock

Random Thoughts

2011-10-06T13:50:00.000-04:00

I am truly loving this fall weather. The colors are beautiful and the nights are cool. The days have been warm, pushing the 80's, but it has been lovely. Most of our Halloween decorations are out and we are trying to decorate outside as well.

Yesterday, I had a profound moment with Caleb. He forgot his lunch so I had to take it to his school. I was a little late so the kids were already in the lunch room. I had to wander around the lunch room, amid all of the chaos of middle school lunch, and try to find him. He was mortified when he saw me, and that was the moment I realized just how old he is getting. I really think that was the first time I had embarrassed him in front of his friends. Ahhh, middle school, the hardest years of school.

I have realized that no matter how long we have been on this journey of a life with a special needs child, it still hurts to be left out of family events. It hurts to see pictures of, and to hear about, family events that we didn't even know about. Common excuses I have heard: We didn't think Gracie would like it, We thought you would be busy, It's too hard for Gracie, and my all time favorite: We went to check it out, and we'll all go next time. Yeah right.

The worst one we missed was the short trip that I planned and discussed with someone. We agreed to do this trip very soon, but of course they all did it and we never even knew about it.

Yesterday, THE MAN had an appointment to come out to our house and show us a different stroller that he wanted us to get. I liked the looks of it online so I agreed to have him bring it out. I was not looking forward to this meeting and scheduled it for when Hank would be home too. That way, if I got too frustrated with the man, then Hank could talk to him.

However, when I went to the door, there was a different man standing there! He is taking over the job and I couldn't be happier! We actually worked with him years ago, when we got Gracie's first stroller and he remembered us! He was excited to see Gracie and couldn't believe how much she had grown. I was touched to see that he cared enough to remember us from all those years ago.

Even better news is that we liked the stroller that he brought and we decided to start the paper work to get it. He listened to everything I said we needed and never once told me I was wrong. What a relief to work with someone who listens to parents! Hopefully, it won't take too many months to get the new stroller.

Finally, Gracie's respite is going well. We now have four different ladies who rotate the schedule. They are all great and really good with Gracie. We do have a favorite though. She is just wonderful with Gracie and Gracie loves her. It feels so good to have people who care, and enjoy spending time in our home. This has been really good for all of us and wish I had started it years ago.

Smoothing Out

2011-10-05T13:14:00.000-04:00

I have yet to hear back from the superintendent or the advocate. I have called and left messages, but no calls back. I called the superintendent and she was available until she heard who was calling, then I was told she would have to call me back. That was Monday and still I am waiting.

I am thinking that I am going to take matters into my own hands. I am going to omit the middle guys, the superintendent and the advocate, and just go straight to the teacher. I am going to express my concerns to her, I will apologize in case she feels I was being critical of her, and I will tell her my need to see for myself that Gracie is safe and comfortable in this classroom. Hopefully we can work this out between the two of us.

I'm not sure this will work though, because I started this with discussions with the teacher and didn't get anywhere. However, I didn't think I needed to reassure the teacher, and make her feel that I wasn't being critical. I think I come across rather gruff, and focused only on my child. I need to put some focus onto interacting with the teacher and making sure she knows my intentions. That's really hard for me, because I am a cut the crap kind of girl and want to get straight to the point. I don't have any desire to be all kissy kissy with these people. Maybe that's where the biggest problem lies...

Swimming this week went pretty well. It seemed much more organized and under control. However, there were a few issues. Gracie was being helped by a sub parapro and I thought she was rather impatient with Gracie and kind of snapped at her. A few minutes later, one of the regular paras spoke quietly with the sub. I heard "Mom is here so you may want...". I would have preferred if she had said something about how she should be nice to Gracie all the time and not only when mom is there. Gesh.

Despite the issues, Gracie was happy to go back with her class. I think she is adjusting to the loudness, and the craziness, of this class. I also think the paras have adjusted more and have a better handle on things. I'm feeling a little more comfortable, since Gracie is feeling more comfortable. Hopefully I will be able to talk to the teacher soon, view the classroom a few times and things will smooth over.

Twisted

2011-10-03T20:59:00.000-04:00

Well, our school problems are still the same. I spoke with the advocate last week, and she told me a few things the superintendent said. The super keeps trying to sell me on the class, and she shared a few things with the advocate that she keeps saying to me.

What makes me the most frustrated is that the super has twisted everything I have said and turned it into different issues. She says that I am judging them and finding them lacking. She thinks I am not giving them enough time, and we need to wait. She keeps turning this into placement issues and wants me to view a general ed class so I will then be sold on this class. She also tells me the teacher is uncomfortable with me in the classroom and feels that I am critiquing her. (I find that hard to believe since I have only been in the classroom one time.)

This superintendent can talk circles around anyone and can twist things in ways that I can't keep straight. My concern is Gracie's safety, and it has nothing to do with them. I do believe they are doing the best that they can in a very difficult situation. They need more help in this room and maybe should split this room into two different rooms. I don't agree with things they have said in the room, however that is minor compared to Gracie's safety.

Today I have been waiting for calls back, from the super and the advocate, but none came. Videotaping was supposed to be done last week, but so far I have heard nothing.

Tomorrow is swimming and horseback riding and I am going to both. I don't plan on entering the building so I shouldn't get kicked out again. (They swim at a different building.) Let's just see is she agrees to let me stay for the riding and swimming. If they don't want me to stay for swimming, then Gracie is coming home with me.

At this point, I don't see where this is going to end. I think we need to have a sit down meeting and talk this out. Except for getting kicked out, this has all been done over the phone. I also need the super to stop talking and to actually listen. If she does, she may just hear what the issue really is.

If You Give...

2011-10-02T20:35:00.000-04:00

If you give a mom a muffin, she'll want a cup of coffee to go with it. She'll pour herself some. Her three-year-old will spill the coffee. She'll wipe it up. Wiping the floor, she will find dirty socks. She'll remember she has to do laundry. When she puts the laundry in the washer, she'll trip over boots and bump into the freezer. Bumping into the freezer will remind her she has to plan supper. She will get out a pound of hamburger. She'll look for her cookbook. (101 Things To Make With A Pound Of Hamburger.) The cookbook is sitting under a pile of mail. She will see the phone bill, which is due tomorrow. She will look for her checkbook. The checkbook is in her purse that is being dumped out by her two-year-old. She'll smell something funny. She'll change the two-year-old. While she is changing the two-year-old the phone will ring. Her five-year-old will answer and hang up. She'll remember that she wants to phone a friend to come for coffee. Thinking of coffee will remind her that she was going to have a cup. She will pour herself some. And chances are, if she has a cup of coffee, her kids will have eaten the muffin that went with it.

by Kathy Fictorie
based on "If you Give a Mouse a Cookie" by Laura Numeroff

Isnt' this the best?

Gracie and I have been reading the "If You Give..." books, and they reminded me of this spin off that I read years ago. I had to look it up and share it since it is so true and it describes how I have been feeling lately. Things are crazy busy and before I know it, the day is over and I did nothing I had planned on doing. At least we can laugh about it, right?

Sneaky

2011-09-30T06:46:00.004-04:00

Little does she know, but I sneak into her bedroom while she is sleeping.

I pick her up off the floor and put her back in bed.

I cover her again, and then I kiss her face, her nose, and her eyes.

I smooth her hair back and run my finger down her cheek.

I grab her hand and place it on my face in a simple touch and feel the love come over us.

Waiting...

2011-09-29T12:55:00.000-04:00

Oh how I hate waiting!

I hate waiting even more when it comes to Gracie. Today, I am stuck with waiting for our advocate to call me back. She has been helping me deal with the school all along and told me not to do anything until I hear from her.

She agrees with me and thinks that we never should have been kicked out of the school, and she agrees with all of the other issues. Right now, she thinks it would be best if she stepped in and handled things for awhile. I think that is wise, since I feel like storming the school, grabbing up my child, and running for the hills with her. Living in the trees, protecting her from the world, would work right? Right?

Kicked Out

2011-09-27T21:36:00.000-04:00

Well, it's official. Hank and I were kicked out of Gracie's school today, and were told we may not come back unless we have a valid reason.

The story goes like this....we were there for horseback riding today. It was Gracie's first time to ride a horse in years and we needed to drop off paper work for her. I went to drop off the paper and Hank went to the barn. As I was heading to the barn, Hank and a para were coming back in because Gracie was in the classroom and not in the barn. It wasn't her time yet, so she was waiting.

The teacher told us she was in the next room having OT, and the teacher went back to the classroom to be with the kids. Hank and I walked down the hall toward the room that Gracie was in. I peaked in the window, but no one was in there. I knew the para was looking for her so we just stood there waiting for them to come out.

That's when the superintendent found us in the hall and told us that we can't be in the hall for any reason and that they don't want parents just hanging out. If we are coming for horseback riding, which she was not happy about, then we have to meet Gracie in the barn. We may NOT come into the building to meet her.

She also stressed that they are not hiding anything, which makes me wonder. I didn't indicate that I thought they were hiding something. I think the real reason why they don't want us there is because they are afraid that we will find out everything that is happening in that room and we will do something about it. They don't want any issues, therefore they want to keep us away.

My bottom line is this: From what I saw in the class and at swimming, and also from what Gracie is showing me, she and I are not comfortable with her being in that room. I fear for her safety and her comfort. I have noticed that she is puling her hair out again, which is a good indication of anxiety and stress.

I am going to be in the classroom and at the school. If they don't like it, then we can discuss procedures they want me to follow in order to visit the classroom. I also want the videotape that they have promised me this week. They may not like, or be used to, the kind of mother that I am, but I have to know what is happening to my child at school. Until I see with my own two eyes that Gracie is safe and comfortable, I will not just send her to school and hope for the best.

To Hide or Not to Hide

2011-09-26T08:37:00.000-04:00

Gracie is far away from being able to use her talker in ways to communicate well. But, she is on the way!

I recently went to an all day training for the talker and I learned a few things. One thing that was great to hear was just how, and when, to hide icons. Right now, her talker has almost every icon that is provided and we hide almost nothing. We leave it like that all the time.

However, we now know that when we want to work with her, like during a therapy session, or when I am working on words at home, it is okay to hide icons. But once we are done doing our session, we immediately unhide the icons and give them all back to her.

That way, she has access to all of the words. Just like an other child. We don't give a child who is learning to talk a list of words and tell them that they can only use these certain words until we give them more. You never know what a child will say, and I want to give Gracie that chance as well.

One of the things that has hurt the most about her being non-verbal is we don't get to hear the cute things that she would say. We still tease Caleb about how he used to say words, especially "big butts", which is how he used to say 'big bucks'. I will never forget the looks we got from people when they heard him say that.

The main goal is to give Gracie access to as many words as possible and just work on a few at a time during sessions. That way, we can hear the cute things that she says!

I have to say that I have already seen this work with Gracie. Because we don't hide words, she has taught herself how to tell us jokes, and we laugh and giggle with her. She also loves the hello icon that says hello in several silly ways. She can find her secrets page and her silly phrase page. One thing that I am amazed at is how she has taught herself how to navigate between pages, and just how quickly she does so!

If we had limited her icons, then she wouldn't be able to do these things. It has only been about three months since we set her device up in this way and I can't wait to see what else she will do as she continues to teach herself some things.

Now, having said all of that, as soon as I got home from the training, Hank and I talked about the school issues. He had gone to view the classrooms while I was at the training so we had a lot to talk about. One thing he had learned from the superintendent was that the speech path wants to hide icons on the device. I guess the two of them have talked about this without discussing it with us.

I sent an email to the speech path who was at the training with me and asked her to talk to the speech path from the school. I think it would be very helpful if the info came from her, instead of from me, and she may just agree much more easily. Hopefully this won't become another issue to deal with.

Remembering When....

2011-09-25T15:16:00.001-04:00

This was last September. We spent the day at the park and had a wonderful time. Gracie not only liked swinging this day, she actually learned how to do it by herself. I love these pictures and the feelings they give me when I remember this day...

Peers

2011-09-24T23:03:00.000-04:00

Today, Hank and I took Gracie to a gathering being held for people and kids who use AAC devices. I was so excited to go and see all of the kids and the devices. I was super excited for Gracie to get a chance to see other kids use devices and I had hoped that being around the kids would encourage Gracie to use her device.

Things didn't go very well though. Gracie gets really excited about going to gatherings, family activities, school, or anything with a large group of people. However, she gets very overwhelmed very quickly. She doesn't like when she is around people and she hates when they look at her. She wants to like it, and she wants to get the attention from people, but it just overwhelms her and she shuts down.

She was crawling around on the floor and under the tables. She got very grabby and grabbed our glasses off our faces, grabbed her own glasses, grabbed clothes that others were wearing, and anything else she could get her hands on. As soon as someone came over to her to say hello, she grabbed whatever was in reach and threw it.

It was rough and after driving over an hour and a half to get there, we decided it was time to leave after only about an hour of being at the party. This whole event took all day to pull off, with getting ready, driving there and back, and having to make a unplanned stop to buy her a new outfit since her diaper leaked. All we got out of this was a feeling of failure and disappointment. Despite that, we will go again, if they have another gathering. I still think it was good for her to see the other people with the devices, even if she was looking at them from under a table. Hopefully, over time, she will get comfortable with these kind of gatherings.

Bumps Pt. 2

2011-09-23T07:47:00.000-04:00

I had a long conversation with the superintendent yesterday and we discussed most of my concerns. I don't feel like she listened very well and mostly just tried to sell me on the classroom and the teacher. She told me reasons as to why the other class will not work for Gracie and why she thinks Gracie should stay put.

She did tell me that they have been discussing changes to make in the classroom. They are planning to remove a student from the room and they also want to add a new staff member to the room. I think this may help but I am not sure it will help enough.

She also said they have been discussing ways to make the class safer. She is aware of the safety issues that are going on and she does want to fix it. However, she told me that she cannot guarantee that Gracie won't get hurt in that room.

We ended the discussion with the plan of them videotaping Gracie in the classroom and for me to view both classrooms again.

It makes me so frustrated that there are only two options for her, and neither one is right. I have talked with a few people and got one piece of advice that was great. She said that another family wanted a one to one aide with their child and the school told them no. So, the father said: "Well I guess I am the aide then." and he went to school with his child everyday. After a week, the school found an aide for their child. I think I like this idea! If they can't guarantee her safety then I guess she needs an aide. If they can't find one then I will do it. We'll see how long they like me in their room everyday!

A Few Bumps...

2011-09-22T13:42:00.000-04:00

...well, make that a few big pot holes!

After the first few days of school, I stopped going to the classroom. I figured they needed time for the kids to adjust, to get used to the routine and to the new teachers, and they really didn't need a mother hanging out all the time. I did keep in touch via notes and phone calls, and I thought things were going well. Until yesterday...

It was the first swim day of the school year and I was excited to go and watch. I always go to watch and to help out on swim days. In Gracie's three previous years of being in the class, I have only missed one day. (I stayed home to watch President Obama's Inauguration.)

When I got there, Gracie was sitting on the side of the pool because there wasn't enough people to help out. She needs someone to hold her up in the water and can't be left alone even if she is wearing a life jacket. She was patiently waiting her turn and seemed to be happy.

As I watched, I was amazed at the unorganization. No one knew which child they were going to be working with, one para was not there, and they had no clue how to lift a child out of the water. They have to use a lifting procedure, and lift only in a certain way. I kept thinking that they should have practiced this before they had the child in the water and depending on them. I would have been mad if that were my child.

Twice, I saw the gym teacher, who Gracie has had for three years, show his mistrust in the paras. He questioned them and double checked with them to see if they did what needed to be done.

Once it was time for Gracie to get out, I met her at the stairs and took her in to shower her. Immediately she looked at me, puckered her face, and started crying. As I undid the ties around her neck, I noticed a red welt. Someone tied her strings way too tightly. However, I don't think she was crying because of the strings because she never cries when she has pain.

I think she had been feeling anxious and was glad I was there. In the past, this is how it goes when she is feeling anxious in her room. She will be okay, until I get there, and then she breaks down. I do the same thing. I make it through any tough times, but when someone asks me if I am okay, I break down.

I decided there was no way I was going to send her to school without me, so I went straight to her school. The kids were having lunch and I just watched to see how things would go.

It was loud, there were 3-4 kids who need one on one paras, but there were only three paras in the room. There is another child who has to be tube fed and another one that needs to be fed with a spoon. While watching, I noticed one child slamming a door over and over again, but no one made him stop. Another was screaming, and another was hitting and running away from a para.

In all, there were 5-6 kids who need almost constant one on one, and there are only 4 adults in the room.

I heard a lot of things said, that I didn't agree with. The child who needed to be spoon fed, has a hard time eating. He has to eat 5 bites of his lunch before he can have any fruit. Well, he was having a hard time eating his lunch, and the paras and the teacher all said how disgusting it was. The teacher said it looked like vomit. But then they kept insisting that he eat it.

Once Gracie was done, she didn't want to put her plate in the sink. The teacher said to her: "If you want to go home, then you have to put your plate in the sink." If you want to go home...are you serious?

Also, during the chaos, Gracie grabbed her sandwich baggie and put the whole thing in her mouth. No one noticed. If I hadn't been there, I don't know what would have happened.

Finally, I watched when they got the kids ready for the bus. I asked Gracie if she wanted to ride the bus or to come home with me. She didn't really give me a good answer, so I walked away to see what would happen. Then she looked at me and puckered up her face again. She wanted to come home with me.

I have since gone back to the class but they have now put a huge stop sign on the door telling me anyone that the kids are learning and not to interrupt. When I peeked in, the kids were having what looked like free time and were running all over the room. I went in, of course.

To be continued...

Some People...

2011-09-19T21:53:00.000-04:00

...just don't understand.

Today, we took Gracie to our public library. We love to go there and pick out books now that Gracie enjoys reading them with me. The workers are always very welcoming to Gracie and talk to her and always understand when she makes loud noises. I love watching them interact with her, and I love seeing how much Gracie makes them smile.

However, there is one worker who just seems to not understand. She has used the R word with both me and Caleb, and she loves to complain to me all the time. She seems uncomfortable with Gracie and I think she doesn't have much experience with people with disabilities. She is nice enough, but seems to lack the ability to think beyond her own life.

Today, Caleb and I, and Gracie and her respite worker, all went to the library. Beforehand, I spoke with her worker about how I want to focus on the talker more, especially when we go out to places. We planned on trying to get her to say hello to the workers.

Not only did my superstar Gracie say "hello", she said "hello" twice, and later said "good bye" and "thank you". We had to encourage her and help her to do this, but she did it. I was so very happy and proud of my girl. The look on her face was priceless. She knew she did a good job and was proud of herself.

We were relishing the moment and I was talking with the library aide and the respite worker, when Gracie pushed another button. She said "Mr Potato Head", and then said it again. It was just a cute moment and she was wanting to say more, but didn't know how so she pushed anything she found.

Well, this is when the other library aide said "Well that doesn't make sense."

I couldn't believe she said that. After Gracie did such a wonderful job, all she could say was that it didn't make sense. After the planning we did, and all of the practice Gracie has done with saying hello, thank you, and goodbye, that was all she could say. I found that very insensitive and cruel.

Not only did she say that in front of Gracie, she also said it in front of Caleb. Gracie didn't seem to understand what she said, but her brother sure did, and it hurt his feelings. He was proud of her too, and we were all enjoying the moment, when she said that and almost ruined it. We didn't allow her to ruin it, but it is a moment that will forever be tainted by an insensitive and cruel comment.

I replied by saying that it makes sense to Gracie and that is all that matters. The respite worker, Caleb, and the nice library aide agreed with me, and said again what a great job Gracie did.

I just wish that people would think before they talk and try to be understanding of others.

So Far....So Good

2011-09-14T13:17:00.001-04:00

So far, this school year is going well. We have had a few bumps, but nothing horrible.

I went to check up on Gracie last week and she was out of the room, going for a walk with a sub parapro. The para told me that Gracie's talker had been put up on the shelf for most of the day. That made me very upset, as I had just talked with the teacher about not taking it away from her, and that she needs access to it all day long.

However, I have had several notes come home about how well she is using the talker, and even purposefully used it with the teacher for five minutes. That's a great start! She has also bonded with one of the paras and has been using the talker more with her. This is only the second week of school and things haven't calmed down yet. Hopefully once it does, the talker will be out all day. Also, this teacher is fresh from college and needs more time to adjust.

Gracie's OT is the same one she has had for years and I am so glad to hear she stayed with the kids this year. She knows Gracie well and sent me a message about how glad she is to have this chance to work with Gracie again, and how fun it has been to watch her grow and learn.

Caleb's classes are going well. He likes all of his teachers and is still loving the fact that his best friend is in his homeroom and they get to share a locker. Math is going okay so far, and he likes the math teacher. He hasn't had any homework yet, just reading. That is totally fine with me! I will love if he never has math homework again!

Caleb and I had the chance to have a long conversation about middle school. We talked about how it was when I first started middle school, and how things have changed since then. We talked about bullying and what to do if he sees it, or if it happens to him.

His biggest concern now is he has a friend who only wants him to be friends with him, and no one else. He feels guilty about having other friends and I helped him come up with ways to handle it. Hopefully some of the ideas will work and make things go smoother for him.

I love when I get the chance to really talk to him, and to listen to him, and not have to deal with other stuff at the same time. We need to make sure it happens every week, if not every day.

Let's just hope that things continue to go this well and both of my kids have great years at school.

Rising Above

2011-09-11T20:57:00.000-04:00

“Now, we have inscribed a new memory alongside those others. It’s a memory of tragedy and shock, of loss and mourning. But not only of loss and mourning. It’s also a memory of bravery and self-sacrifice, and the love that lays down its life for a friend–even a friend whose name it never knew. “

- President George W. Bush, December 11, 2001

In the past few days, I have been watching programs about 9/11. The most moving ones have been about the heroes of that day, about the ordinary men and women, as well as the firefighters, who put their own safety aside in order to help others.

Some people refused to leave others, choosing instead to stay in the burning buildings and help them. Two men stayed in the burning building, right below the impact zone, and saved 70 people, but they lost their own lives doing so.

I was also able to watch a program about the heroes on Flight 93, the ones who overtook the hijackers and refused to let them crash into another of our nation's buildings. I was in awe of their strength and self sacrifice that they showed.

I was brought to tears several times, and was so moved by the stories of true bravery. I was in awe of so much bravery in the face of such horror and terror. We were devastated that day, but we rose above and showed remarkable bravery, strength and honor.

Today, my thoughts and prayers are with those who lost their lives on that fateful day, and with their families. We will never forget you.

My heart goes out to all of the firefighters, police men and women, and to our military, who do remarkable things for us each and every day. Thank you for all that you do.

Sometimes...

2011-09-10T17:50:00.001-04:00

Sometimes the overwhelming emotions get the best of me and I feel so sad, so isolated, and so bitter. Sometimes I get so tired of dealing with all of the extra crap and extended family who just don't understand. Sometimes I get so upset over thoughtless comments and judgements. Sometimes I get so worried about the future and the unknown.

But then I look into your eyes, see your beautiful smile, and feel so in love with you, and so very thankful to have you in my life. Everything else just goes away and I focus on you, and how incredible you are, and how much I love you. I shut everything else out and feel nothing but peace and love. You are what makes me feel so better.

The First Day of School 2011 Pictures

2011-09-07T10:07:00.000-04:00

He was nervous.

Ash had her first day of her senior year. Cabela had to get in the picture too, so she could show off her first hair cut.

She was so cute in her new outfit!

Both of my kids had a great first day at school.

Meetings

2011-09-03T09:08:00.000-04:00

After I wrote the post about my fears for the upcoming school year, I felt very relieved. Just figuring it out and writing it all down made a huge difference. I was also able to meet with the school SLP, the new teacher, and the three new paras.

I am most excited about the school SLP. She is new to our school, which I love, but she also has experience with the Vantage Lite, which is the best news ever! She loves the Unity program that the VL uses and knows how to use the device and program it too. She seems very excited to get to know Gracie and to help her continue to learn about her device. She will also be contacting the SLP we have seen all summer, and with the two of them working together, I just think this may be the best school year ever.

The three new paras seem very good and seem excited to start the school year. Two of them spent some time with Gracie, on the floor of course, and looked at her talker. I really liked that they got down on the floor, on Gracie's level, and didn't expect her to get up right away. That made me feel much more comfortable.

At the open house, I was a little unsure about the teacher. She said a few things that I didn't really like, such as making a joke about Caleb and didn't I wish he was non verbal also. I'm just going to say she has a quirky sense of humor, is a little naive and inexperienced in working with parents of special needs children, and not let the comments bother me.

She very kindly agreed to meet with me the next day so I could give her some basic info about the talker. She spent an hour with me, learning about what Gracie can do on the talker and a little about Gracie's diagnoses.

She said she hadn't spent much time reading about the children because she didn't want to have any preconceived notions about them. I respect that, but told her she might appreciate me telling her more about Gracie's behavior. We were able to discuss a few of my concerns and I told her a few things to expect Gracie to do, and how I handle them at home.

I am going to put together a helper book with basic instructions about the talker, and resources that they can use if needed. We talked about where to start and how I don't want it to sit on the teacher's desk all day. Gracie is to have access to it all day, and they can turn the volume down if needed, but not off. I explained that just like children who talk, if Gracie starts talking on the talker about other things, then they redirect her and get her back on task. They do not take it away or turn the volume off.

Overall, I feel much better about the school year. Gracie did okay at the open house but did spend most of the time on the floor. I think she liked her teachers and I think that it helped so much to be able to meet them before school starts. I expect a few bumps in the next few weeks, but we are looking forward to a good school year.

My Fears for the New School Year

2011-09-01T11:57:00.001-04:00

I have had a lot of trouble sleeping the past week. I thought it was from the medicine that I have been taking to help fight my poison ivy. Today, I figured out what has been bothering me and keeping me up. School.

I am so nervous about this school year.

Gracie does not do well with transitions, following directions, participating, or staying on task. She constantly sensory seeks and tests everyone's patience.

She is going to cover her ears and drop to the floor, throw things off the table, and slide out of her chair. She is not going to color when they want her to, she is not going to leave the room when she needs to and she is going to cry. She will not come in when recess is over and she won't eat her lunch.

Why?.....This is typical behavior for her when faced with new people and new environments, and because everything is over stimulating to her. She is going to be stuck in a new classroom, with four new people, all day every day, and have no way to tell them how she is feeling. Sure she has her talker, but she isn't using it for emotions yet. Those emotions are so overwhelming for her that I don't think she will be able to do that for years.

She is going to be overwhelmed and scared in this new environment. She is going to need time to figure out which people are not going to cough, sneeze, or yell. She is going to need time to learn about the new kids in the room and get used to them.

She is going to push buttons and test all kinds of limits. They are not going to understand her and they are going to blame all of this on bad behavior. They are not going to have, or take, the time to understand why she is doing the things she does.

It is going to be awful. At least, that is what I am scared about, and why I haven't slept more than three hours a night for a week.

I'm sure my lack of sleep isn't helping me handle this right now, but at least I figured out what I have been worried about. For good, bad or ugly, I am putting it all out here. Hopefully I can start to deal with this and not be so worried. I think once I have had some sleep and time to process through all of these emotions, I will be more positive.

Special Exposure Wednesday/Best Friends

2011-08-31T18:15:00.000-04:00

We've been enjoying the cool mornings by taking long walks. Of course Cabela has to come with us, but she is still a puppy and gets tired. We get lots of smiles when people see us!

Go Here for more SEW

That's Not Going To Work

2011-08-30T21:51:00.001-04:00

I got the call from the bus garage for Caleb today. Because he is starting middle school, he will be leaving much earlier than he used to. We live on a dead end street and I have been worrying about how Caleb will do at the end of the street, alone in the dark, waiting for the bus. There was no way I was going to let him go down there by himself. He is only 11 years old, and to me, he is just too young for that. I wouldn't be able to leave the house and wait with him because I have to get Gracie ready for school at that time.

Imagine my surprise when the bus driver told me that Caleb's bus stop isn't at our corner, but instead is several blocks over and across a busy road. There is no way that this is going to happen, and when I said as much to the driver, she told me there is nothing we can do about it. I was informed that all of the buses are having to make super stops this year and all of the kids are expected to walk distances to the bus stop.

I could call the bus garage and try to make something happen, but with all of the other kids having to do this too, I don't think it will work. I can't expect the bus garage to make special accommodations only for my son. I am just going to have to find a different way for him to get to school.

A Little Surprise

2011-08-27T19:17:00.001-04:00

Gracie got a letter from her new teacher today! She basically just introduced herself to us and invited us to an open house before school starts. I am so relieved that we are going to get to meet her before school starts. There was no way I was going to leave Gracie with a teacher I had never met, along with the three new paras that I have never met. More importantly, I didn't want to leave Gracie with people that she had never met before. Hopefully this will help Gracie transition to what is going to be a whole new school situation.

Of course, we are still waiting on all of the other things talked about at our meeting, but I am still looking forward to a fresh start and a much better school year!

Weary

2011-08-25T20:07:00.001-04:00

For the past few days, I have noticed a weariness in Gracie. She seems tired all day and is ready for bed very early. Because she is going to bed earlier than usual, she is getting up earlier too. That is a good thing since we have been sleeping in this summer and need to get ready for those early mornings of school. However, it makes for some long days since she is so tired by the afternoon.

She also seems weary about going to therapy too. She has been giving them a rough time and not wanting to participate at all. She doesn't want to practice her talker and just wants to push grandma's house over and over again. It's like she is telling us she is done with all of this and just wants to have fun. I don't blame her, and over the years, I have made a point to give her time to just be a little girl. She has been in therapy, in school, and at doctor appointments her whole life. When is she supposed to just be a little girl?

I've been weary too. It seems that after nine years of being the mother of a special needs child, that I would have a better handle on this now. I think I am going through a new stage in this emotional roller coaster. I am fighting the acceptance again, and not being able to keep up with everything anymore.

I dropped the ball with her medicine this week and waited too long to get a refill so I had to call the doctor for a new script. I put off getting her new afos and scheduled the appointment weeks later than I could have. I also didn't get her shoes for the new afos until the morning of the appointment. I haven't done any paperwork for her stuff and have just been putting everything in a huge pile. Nothing has been filed away or dealt with. I had a phone interview scheduled for today and forgot to reschedule it so the lady will have to call me back at a different time. She set the appointment with no input from me, however I did nothing about it. I didn't get pictures that we needed to take to therapy today and I didn't add the ones they wanted me to add for occupational therapy. And I could go on but I think you get the point, and I need to stop beating myself up now.

I guess I am feeling a little like Gracie does...she just wants time to be a kid, not one with therapy and appointments all the time, and I just want time to be a mom, without all of the extra stuff do handle and deal with. That's not so bad, is it?

Back to the ER

2011-08-24T18:01:00.000-04:00

Well, this poison ivy isn't letting up, and actually, it got much worse. I now have a secondary infection and needed another steroid shot and oral antibiotics. I also have a new topical cream that hopefully will help to get rid of this nasty stuff. If not that, then hopefully it will give me some relief to the constant itching and burning.

This is really taking a toll on me. It's not the worst stuff ever, but it is constant. It.Does.Not.Stop.Itching or Burning. I can't sleep because of just being too uncomfortable. After a few days of no sleep, I am not a nice person to be around.

It also irritates me that I had to go to the ER twice for this. Not only is this going to cost much more but I was also around lots of sick people. Right after I went in today, a woman came in with two kids, both with what the mom thought was strep throat. Read here, and here if you want to see how I feel about strep throat. Just thinking about it makes me panic. I've had it four times since right before Christmas and if I get it again I will probably need surgery.

Please, oh please, don't let me get strep after this!

On a good note, Gracie has been such a good girl for the past few days and that has really helped. We practiced her talker today and she did a great job finding farm animals and telling me what animal makes a certain noise. I loved it!

I Wouldn't Wish This on Anyone

2011-08-23T09:05:00.000-04:00

photosource

That's not a terrible looking plant, right?

Wrong!

Anyone who has been unlucky enough to get poison ivy knows that that plant is evil, pure evil.

I grew up in the country and know what this stuff looks like. I know to look for it and to stay away from it. I have had poison ivy before so I know it isn't fun. So what was I thinking when I pulled weeds from around the deck and didn't make sure I wasn't pulling poison ivy?

However, I have never had poison ivy like this before. It started on my face and hands and neck and has spread everywhere. When I say everywhere, I mean everywhere. It is horrible. It burns like fire and itches like mad.

I started out by thinking I could treat this at home and in a few days I would be all better.

Wrong again.

I was using sprays and lotions and I think I over did it. My face and neck are now dark and scaly. But it still itches. I hope it is not permanently scarred.

It got worse as the days went on. My eye was swollen almost shut and felt gritty. That's when my mother talked me into going to the ER so I could get a steroid shot. That helped so much, but it is still getting worse.

I now have to take oral steroids for 12 days and wait it out. That's all I can do.

I am keeping up with Gracie's appointments. The doctor assured me that it is no longer contagious but people are still avoiding me like I have the plague.

I'll end with what my mother read in her medical book. It says that poison ivy should be used as chemical warfare because it is so bad. I have to agree.

I've Waited a Long Time for This!

2011-08-21T09:31:00.001-04:00

I have loved reading since I was a little girl. I still remember the first time I picked up a book to read just for fun. It was summer time and I was really bored. I complained to my mom about being bored, like any good child would do. She told me to go read a book. So I went to the bookshelf and found the book The Yearling by Marjorie Kinnan Rawlings. I loved it, and after that, I have always had a book in my hands.

I have done everything to instill in my kids a love of reading. Caleb and I have read books together since he was born. I have many precious memories of the two of us reading together every night at bedtime. I can still recite Good Night Moon by heart.

Now that he is older, he claims to hate reading, because he thinks it is cool to feel that way. However, he loves going to the library with me and right now he is really into graphic novels.

Gracie, on the other hand, has never liked reading books. She would not look at the pictures and she would not listen as I read to her. She had no interest at all. I was sad about that for years, but I never gave up hope.

Things have changed this summer. We have been going to the library a lot and she has a few favorite books. She absolutely loves the David books. I think she likes to see that he gets into trouble too, like she does. I think she likes to see the messes he makes and she always laughs when we read how he forgot his pants.

She also likes the If You Give... books. She loves to find the little mouse on every page. We use her talker to find things that are in the books so she gets practice with her talker too.

I have waited years and years for this and I am enjoying every moment. We just need to find some new favorite books because the library isn't going to let us keep renewing these books forever!

Enough Already!

2011-08-19T12:23:00.000-04:00

This has been a crazy week. We have had a lot of things to do, places to be, and people to see. The problem is my car broke down again.

I had Gracie all loaded in the van, including all of her stuff we needed. Then I got myself in the van and tried to start it. Nothing. Not even a clicking sound. The lights came on in the dash, the radio came on, and the windows work, but that was it. It didn't even try to turn over.

After playing car shuffle with Hank and my parents, I was able to use Hank's truck to take Gracie to her next therapy appointment. Thankfully, we got there, but on the way home, the truck broke down. I was at our road so we weren't stranded and didn't have to walk far.

Hank figured out what was wrong with the truck, but he had no way to get to the part's store. He had to ride my bike, my red, old fashioned bike, to the part's store.

I laughed so hard, and called my mom to tell her about Hank having to ride my bike to the store. She laughed too.

Hank, however, didn't think it was funny.

After the truck was fixed, I had a few more errands to run. As I was driving, I kept itching my face and neck. Since the mosquitoes are so horrid right now, I figured I must have been attacked.

Uh, wrong. I woke this morning was a red rash all over my face, neck, hands, and my right eye is swollen. I have poison ivy. I have never had poison ivy this bad before and I have no idea where I got it.

Because my car is still not working, I loaded Gracie into her stroller and walked to the pharmacy. I needed to get some stuff to help kill the poison ivy and to help control the itch.

Guess what. They were sold out.

Now, I must suffer through the day. Hank is at work, and my mom is not home to give me a ride. Gracie is all over me, like usual, and I am worried that she will get it.

My final complaint is that I must have slept wrong last night because my neck hurts every time I move and I can't look to the right. So far, Motrin is not helping much, and I have to wash all of my bedding to help get rid of the poison ivy.

Things could be worse, though, so I am trying to find the humor in all of this. Hopefully I can prevent the spread of the poison ivy, while trying to keep Gracie happy today.

Special Exposure Wednesday/Priceless

2011-08-17T09:10:00.001-04:00

My two babies.

He didn't really kiss her.

He just made kissing noises and puckers at her,

which made her giggle uncontrolably.

Priceless.

Back to the Land of Internet

2011-08-15T08:22:00.000-04:00

We just got back from a short vacation to the UP of Michigan. We went to our favorite town, Sault Ste. Marie and had a great time. Then we went to the very small town of Grand Marais. It was so remote that the internet wouldn't work and most of the time we didn't have cell reception.

We had a good time but it is so good to be home!

Gracie on the rocky shore of Lake Superior

Caleb on the sandy bay of Lake Superior

The view from the swing at our hotel. I totally monopolized the swing and just soaked in the view.

I loved watching the ships go by...

My niece Ashleigh with the Mackinac Bridge behind her.

Dreaming of Fall

2011-08-11T09:01:00.001-04:00

We've been so busy the past few days, but I have been relaxing with Pinterest. I am dreaming about fall, when the kids are back to school, the air is crisp and fresh, and I have more time on my hands. The following pictures are some things that I plan on making once the kids are back to school.

Go HERE to see who made this adorable wreath!

Go HERE to see how to make this!

Go HERE to see where I found this!

I just may make a little of this to enjoy while I do some crafts!

Go HERE to see how you can make your own!

Do any of you have special plans once the kids go back to school?

Is It Over Yet?

2011-08-08T10:09:00.001-04:00

Just the other day, I was thinking about how summer will be over very soon. I wasn't ready for it to be over, nor was I ready for the busy days of school. The crazy mornings, the homework, and everything else that comes with school sounded exhausting to me.

Today is a different story.

Gracie is so ready for school that she is driving me crazy. She needs school. She is so bored, so miserable and unhappy. She is whining, she is pinching, she is scratching, she is pulling my hair, she is slamming into me over and over again, constantly on my body.

She desperately needs to be with other kids, on a daily basis. She needs to watch them play and run. She needs to listen to their voices and just be with them.

We have used every toy, read every book, watched every movie, and gone to tons of places, repeatedly. We are all used up with nothing left over. It is hard enough to try and get her to play with things, but after all summer of it, she is done. She won't play with anything for more than one minute.

She just doesn't play. She never has and I worry that she never will.

I DON'T KNOW WHAT TO DO WITH A CHILD WHO WON'T PLAY.

This is torture for her and for me. We still have a month before school starts. September 6th can't get here fast enough.

We Made our Choice

2011-08-07T20:04:00.001-04:00

Finally, after several meetings, and even more phone calls, we made our choice about what kind of stroller to get Gracie.

If you remember, I didn't have much luck with the man from DME who came to our home, so I talked with our therapy center where we go for the talker. They got us set up to meet with their PT and she then set up another meeting with the same man from the DME. She wanted to help us work with him.

I still was not impressed with this man. I would show him something that we need, and he would tell me why we didn't need it. He also must love the sound of his voice because he never stopped talking long enough to hear what I had to say. Even getting him to stop talking long enough to ask questions was difficult.

He had also promised to get samples of the strollers so we could see what we would be getting. We could test them out, put Gracie in them, and see what one we liked better. Well, he showed up with similar, but different strollers. The tilts were different, the way they go together was different, the bases were different...I think you get the point.

I was so frustrated with him that I told him I needed more time to make my choice and left. I then did more research and this is what we came up with:

This is the base.

This is the seat, but in red. Gracie made the choice of color. It will also have an abductor and some extra side supports.

I think we will like it. I'm still not happy with getting one without being able to test it first, but I think we have done the best that we can.

My Secret Obsession

2011-08-05T21:37:00.001-04:00

I have to admit something to all of you.

I am a pinner. A serious pinner.

A few weeks ago, I heard about Pinterest and thought it sounded interesting. I asked for an invite, because it is by invite only for some reason, and started my own boards. I have been hooked as soon as I started. I have been spending hours on Pinterest and loving every minute of it.

Basically, it is a place where you can put, or pin, things that you see on the internet that you like. Instead of adding them to a favorites list, you can just use the tab to pin it to your Pinterest boards. Then, all of your stuff is in the same place. Right now, my favorites list is so long that I can never find what I am looking for. Now, I can just go to my Pinterest account, and easily find it.

For example, I found a craft blog that had a Halloween wreath that I want to try and make. Instead of adding it to my favorites list, I just pin it to my Halloween board on my Pinterest account. Anything else that I find for Halloween, I just pin it to the same Halloween board.

It really is easy to figure out how to use. I think that if I can figure it out, then so can anyone else.

For the past few months, I have been trying to redo my living and dining rooms. It has been a slow process, but I am getting some stuff done. I am trying to use some of the vintage antiques I have found at my grandma's house and I have been trying to make some crafty things. I don't think I would have been able to do any of it without Pinterest. I now want to redo the rest of my house.

I think the main reason I like Pinterest is because it is just plain fun, and mindless. I do not have to think at all, and by the time I am able to actually use the computer, I am exhausted, so mindless fun is a good thing.

HERE is the link to my Pinterest boards. If you are interested in having mindless fun, let me know and I will do what needs to be done to add you.

Oldie but Goodie

2011-08-04T09:27:00.000-04:00

Here are my two babies on the beach of Lake Superior while visiting the Pictured Rocks National Lakeshore.

This is one of my most favorite pictures of my two kids together.

Right now, we are trying to decide if we should go up north with my mom and my niece while Hank stays home to work.

Lots to think about in making this decision...

It's so far away...

We could visit this beach again...

Staying in a hotel is so hard for Gracie...

It would be nice to get away...

No one to help me with the physical stuff of my 63 lb. girl...

We could go to some of our favorite places, waterfalls, beaches...

We would be gone for a whole week...

Memories for a lifetime...

First School Meeting for 2011-12 School Year

2011-08-03T09:15:00.001-04:00

We just had our first school meeting for the new school year.

Since Gracie's class is facing so many changes, and because she is the only child with a communication device, we felt the need to meet and discuss a few things.

First, her class is moving to a new school in a nearby city.
She will have a brand new, fresh from college, teacher, and three new to us parapros.
She will have a new assistive tech person and a new speech therapist.
Some of the kids have left her program and she will be getting a few new kids in her class.

Have I mentioned how much I hate change? I really wish things could stay the same.

However, after listening to the principal and director of special ed. give me their descriptions, I have had a change of heart.

Gracie's class has been struggling to find a teacher for a year and a half. We thought that we had found a great teacher last school year, however she lacked enthusiasm and took two leaves, missed more time than she was there, and then resigned at the end of April. Without the paras last school year, Gracie's class would have crashed and burned.

With Gracie's class situation, and other issues in the school, the principal decided to change all of the staff around. Everyone is getting a fresh start and I really think this may be just what this school has needed for a few years.

I still hate saying goodbye to our paras, but I am ready for a fresh start. We have had our fair share of problems with the school over the years, and I don't want that to continue to cloud our judgement of the school. I want to leave all of the problems in the past and start anew.

I am going to look forward to meeting the new teacher and paras, hopefully in an open house that I suggested they hold. We will also be sitting down with Gracie's new speech therapist before school starts. We also have our wonderful speech therapist who has been helping us all summer long.

Really, who wouldn't want a fresh start?

Broken

2011-08-01T14:25:00.000-04:00

Well, it has been 8 months since we got Gracie's talker, and it finally happened.

It is broken.

She dropped it on the floor, many times, but one time was extra hard.

The screen stayed white and wouldn't turn off.

I let it sit over night and it was working by the next morning.

However, it isn't working as it should.

I can't access the tool box and it is stuck in a strange mode.

Thankfully, we have a great insurance on it and will be getting a loaner while it is getting fixed.

I'm just not sure how long it has been since I saved anything on it, and I can't get into the toolbox to save anything now.

Gracie and Her Man, aka Keith Urban

2011-07-30T22:59:00.001-04:00

...wearing her dancing dress with her KU t-shirt, while watching his videos and dancing...That makes for a perfect day for Gracie!

These pictures are from a few months ago, but Gracie's love for Keith is still going strong. We have been spending time dancing to his songs and replaying her favorites over and over again.

Keith is also a strong motivator for Gracie in getting her to do her work on her talker. She knows how to turn his music on, since it is on her talker, but she has to wait and do her work first. It's so funny, that while I am waiting for Gracie in therapy, to all of a sudden hear Keith Urban blaring through the therapy center. We are teaching her to say loud, quiet, and dance, while listening to his music.

It's a good thing that Keith Urban is so amazing, and that we all love him just as much as Gracie does. Well, we almost love him as much as Gracie!

Tell Me How You Really Feel Gracie!

2011-07-29T12:55:00.002-04:00

Gracie loves going to her grandma's house. It is her favorite place to go.

She wants to go there all day, every day.

She signs for it and asks for it on her talker all.day.long.

The other morning, after Caleb spent the night there, Gracie had some things to say about that.

She went to her talker and told me:

"I don't like that. Caleb. Grandma's house. Gracie."

I think she made her point clear!

Prader Willi Syndrome

2011-07-28T09:14:00.000-04:00

Today, my friend Lisa at On a Life Less Perfect ,wrote a beautiful post about a father raising a son with Prader Willi Syndrome. This tribute focuses on the precious and loving relationship between this man and his son, but it also brings awareness to the disorder of PWS. The tribute also focuses on the realities of living day to day with someone that has disabilities, including the struggles that parents go through.

Prader Willi Syndrome is identified by a deletion on chromosome 15. When we were going through the diagnostic procedures, Prader Willi Syndrome was one disorder that the geneticists thought Gracie had. I met some families who have a loved one with PWS and did a lot of research about the syndrome. She had all of the classic symptoms of PWS, but her tests came back negative. Years later, we discovered her duplication on chromosome 15. I have always found it interesting that Gracie's 15th chromosome is the one that has the disruption, since PWS does too.

Please visit Lisa's blog and read this moving tribute about a family living with PWS. Also, spend some time there and read some of her wonderful posts. Lisa has a beautiful writing style, and I know you will not be sorry! Start HERE, since this is my favorite posts titled Snipers in Disguise. One my all time favorites that she has written!

I can't figure this out!!

2011-07-26T21:15:00.001-04:00

Gracie has been doing something for a few months now and it is driving me crazy!! Whenever we eat, she continuously tells me she is all done, but then keeps eating. She will sign all done, then push her plate away, and push her chair from the table, but then she keeps eating.

I have no idea what she is telling me. I thought she was telling me that she wanted something to drink, so I always make sure she has something to drink. Then, I thought she may be telling me that she wanted more of a certain food. One time she was eating green beans and she finished them, she then signed all done and pushed her plate away, so I gave her more beans. Well, she then signed all done and pushed her plate away, but grabbed another bite of beans.

She is persistent about this too. After months of trying to figure this out, I have started to ignore it. However, she will get mad at me if I ignore her and she will grab my arm just to get my attention, then she will tell me all done, push away, and then keep eating.

I have tried everything but have no idea what she is trying to tell me. This is becoming a problem at all meals and I am at a loss. Any ideas?

Beat the Heat

2011-07-25T16:51:00.000-04:00

Gracie tried to beat the heat by eating a most delicious ice cream cone!

You Did Not Just use the R Word in my home, and in Front of my Daughter!!

2011-07-21T17:30:00.001-04:00

Today, we had a man in our home discussing our gas bill. He was here to tell me about how in our state, we have options about where our gas company gets our gas and that by using his company, we would save tons of money.

Before he got started, he talked to Gracie and was really sweet to her. She was grabbing his clip board and name tag, and tried to pick his pockets. He asked her what her name is and I gave her the talker so she could answer him. She proudly pushed the button and told him her name and then he told her that his daughter's name is Gracie. It was a great moment because she was interacting with a new person without needing any help from me.

He got started telling me about his company, but he was talking way too much and not allowing me time to understand or to ask any questions. I quickly made up my mind to tell him no and to give up trying to understand. We were in between appointments and I was too stressed out to really listen anyway.

Before I could stop him, he kept explaining about how the other companies charge a lot more than his company blah blah blah. Then he said IT.

He said the R word. He said the R word to me, in my own home, in front of my daughter.

I gasped and said to him, "You did not just use the R word to me in my own home and in front of my daughter."

He apologized but I don't think he really meant it.

He tried to go on, but I was really done by then and didn't want to hear any more. I told him we needed to stop our meeting now and he left.

I am just a little in shock because he had been so sweet to Gracie and he knew she has special needs. I really hope that we made an impression on him today, and that he will stop using that word.

Sleepover and Sweet Success

2011-07-19T13:13:00.001-04:00

This past Saturday night, we had a sleepover at our house. Caleb's friend Dallas, my sister in law, and my niece, all came over to spend the night. We have been talking about this for a long time and I was happy to be able to finally do it.

Gracie was so excited and such a good girl. She loved being able to stay up and watch the movie and eat popcorn with all of us. She did get tired and go to bed, but she was excited all over again when she woke the next morning and everyone was still there.

We watched some of our favorite movies: Hotel for Dogs and Furry Vengeance.
We had pizza and a delicious popcorn buffet.
We then had baked French toast for breakfast, or as we call it, Gross Disgusting Worm Guts.

Sunday was my mother in law's birthday so we went over to her house for a dinner and a swim. Before we left our house, I showed Gracie a few times how to say happy birthday on her talker. She seemed to get it very quickly, so I was hopeful that she would be able to tell her grandma happy birthday.

When the time came for her to say happy birthday, I had to do it hand over hand because she was being shy in front of everyone. Later, she did it on her own. I was so happy I almost cried. I can't get over how quickly she learned that!

All the hard work is paying off! I'm so excited to watch this process occur, and to see how far she has come. I will have to give a full update when I get the chance.

Rude Stares

2011-07-17T11:54:00.001-04:00

I have said many times before that the starting doesn't bother me.

What I didn't realize was that the stares don't bother me when we are on the move, like shopping, but when we are stuck in the same room with someone who is staring it is much different.

I had to take Gracie to get fitted for her new AFOs and we had the worst experience there ever.

Gracie was tired out and was being a little more active and vocal because of that. There was a woman in the waiting room who totally ignored Gracie, despite everything Gracie did to get her attention. All she wanted this lady to do was to smile at her and maybe say hi. If she had done that, then Gracie would have been in a much better mood.

I did all my usual cues, to let the lady know that Gracie was saying hi to her. "Are you saying hello to the nice lady Gracie?" I said, over and over again, along with other such phrases. But, the lady continued to totally ignore her.

While Gracie was trying to get this lady to just look at her once, another man walked into the waiting room. He would not stop staring at Gracie. Every move she made, every sound she made, was observed by this man. It was the worst staring experience we have ever had.

I tried to make eye contact with him but he couldn't take his eyes off Gracie. Even while he was talking to the receptionist, his eyes were on Gracie. Luckily, she was so focused on getting that lady to say hi to her that she didn't even see the man.

The waiting room was really hot and because of how Gracie was acting, and how that man was staring, I was really sweating and uncomfortable. I was caught off guard, had my hands full with keeping up with Gracie, and didn't know how to handle it. I took Gracie into the bathroom twice, just to get away from the staring man. I was so relieved when they finally called Gracie back to a room.

Once back to the room, they sent in a different person because our usual was busy. He did come in later, but it just made the whole appointment so much harder.

Do any of you have any specific ways that you handle staring? What do you say, or how do you act? I felt like saying some smart comment to him, but I knew that would make things worse. The last thing I want is to get into some type of verbal confrontation with a stranger in front of Gracie. Any advice would be appreciated!

By the way, Gracie picked out her own braces and I think they will be cute. They will be blue and yellow and have butterflies and bumble bees.