10

Look who had her 10th birthday this week:

Here she is holding up her two hands to show us that she is 10 years old!  Her cousin showed her how to do it.  Isn't she cute?!?!?!?

Flashback...

This is when I got back from recovery and got to hold her for the first time...

What Bedtime Looks Like

I came out of the bathroom last night and this is what I saw...

Caleb gets one couch...

...Gracie gets the other...

...and Cabela gets a pillow on the floor...

That's a First

Gracie had a mixed up kind of day.

She did well this morning during our school time.  She didn't do much work, but what she did do was very good. 

Later in the morning we had to leave for therapy.  She did a great job for OT, who she sees first.  She followed directions, crawled all the way through the tunnel for the first time, and did well with her talker. 

Next came speech.  She did an awful job.  She was on the floor, she choose activities but then threw them across the room, and wouldn't do anything.

She was insistent to go outside, go for a walk, and ride her bike.  On her talker she said:  go for walk later, go outside later, go for bike ride now.  I've never seen her use the word now so she must have really wanted to go for a bike ride.

When the speech therapist told her she had to do her work first, she actually reached over and hit her. 

She hit her speech therapist.

This is the kind of behavior she does just for me.  Being insistent on something, being impatient, and getting aggressive when she doesn't get what she wants.  Yesterday, she spent most of the morning being in and out of time out for this. 

This kind of behavior occurs daily.  Some days are worse than others.  Time outs are not working to make this better.  I have tried a reward system but so far we haven't seen much progress with that either.  I try to keep her busy, and plan lots of things for us to do, but when she has her mind set on something nothing will work.  She will get angry, and then hit, scratch, throw things, and whine like crazy.

I really have no idea how to make this better.  It is extremely frustrating, and heart breaking.  I don't want my child to be miserable like this.  I want my happy little girl back.  I've always said she is the happiest child I have ever seen, but that's just not true anymore. 

Rumors About the School

Of course the therapy session at the school went okay.  I spoke with everyone I saw, even those who ignored me.  Gracie did okay, but not great with the therapist.  She walked past the classroom fairly well and didn't drop at all.

I spoke with the lawyer last week and we have decided to continue dealing with the school.  We will have a meeting sometime in the future.  I don't expect much to get done at this meeting, and we still haven't decided on what we want to do about next year.  I'm not sure if I want her to go back to any school, or if I want to continue on with homeschooling her.

All I know is that no parent in the world would think it's okay for their daughter to be locked into a closet with a much older, stronger, bigger boy, especially when you add in the special needs that Gracie has, and the violent behaviors this boy has.  No person, whether parent, teacher, administrator, para pro or even janitor, should turn their backs and walk away from that.  I will not stop this until something changes or all of my options are used up. 

Something is very wrong with this school and these people.  What should have been said to us is that they are sorry this happened to our daughter, and that they were going to do everything humanly possible to make sure it didn't happen again.  Instead we heard how hurt their feelings were, and how much they disagree with us for pulling her out of school.   I won't stop this until I make that point to them. 

Speaking of next year, I've heard a few rumors about the school.  I've heard that all of the superintendents from the surrounding areas are going to make all of the students go back to their local school and not attend the ISD.   The class Gracie was in is a site based program held at the ISD, which is in a different city than where we live.  This means she wouldn't even be able to attend their school next year. 

I have no idea what the local school would do for these kids, and no idea what the program would look like.  At this point, I like the idea of starting over fresh, with new teachers, parapros, and administration.  I also love the idea of Gracie being able to stay in our own city for school, and not having to bus so far away.

I hate this point of not knowing what is going on and what we are going to do.  At least I know that we can homeschool.  I know that I can do a wonderful job and she can learn at home, and that is all that matters. 

Nervous

We're going to the school for the first time since they finished their investigation. 

I'm a little nervous.

I'm a little sick to my stomach.  The thought of seeing some of these people makes me want to throw up. 

However, I'm still going to walk into that building with my head held high, and a smile on my face.  They will only see a very confident, respectful, determined mother who is not going to run and hide from any of them. 

What We've Been Doing

It's been crazy busy here....

Caleb has been hit hard with tons of homework every night.  After all school year with having very limited amounts of homework, to now having lots every night, has been a difficult transition.  He, and I, are in horrible moods by the end of the evening.

We've had lots of extended family problems that are making me do lots of running around, causing lots of stress, and just breaking my heart.

I've been trying to plan extra activities for Gracie to do on her talker.  Practicing the talker has fallen down on our priority list, and I want to get it back up there on the top.  Finding new, fun ways to practice is going to be key to getting us back on track.

Gracie's birthday is next week and I haven't even started planning.  I have no idea what we are going to do, or even what day we will be having what ever kind of party we come up with.

My house is out of control, laundry is backed up, and I never even got groceries this week.  We are barely getting by with what ever we've had on hand.  I did run to the store to get some milk tonight, so that's a step in the right direction.

We've lost one respite worker because she is close to having her baby, and we lost another because she just didn't fit into our family.  The company we use is already short handed and has no one to fill their shoes.  This means we are not getting any help with Gracie.  Spending 14 hours a day with Gracie, mostly alone, is exhausting.  It also means that trying to do anything that doesn't include her is impossible.  Dishes, laundry, showering, or simply going to the bathroom is a joint effort.

The one thing that has been helping us get through is our Keith Urban CDs. It's ridiculous how much we love that man and his music.  It never fails to calm us down and improve our moods.  Gracie and I will dance around the house, laughing and enjoying the music.  She will run around and allow me a few moments to pick up the living room, wash the table, or do some other small job around the house.

Seriously, I don't know how we would be getting through these days without our Keith Urban!  I've tried other singers, other music, even Justin Bieber, and nothing works like Keith.  In our life, and with all that his music has done for us over the years, nobody will ever be as dear to us as Keith Urban.

Hopefully things will calm down soon...

Believe

Through the years since Gracie's diagnosis, we have been through numerous therapists.  There have been a few that have touched our hearts and made a difference in our lives.

Right now, Gracie sees a speech pathologist and an occupation therapist in a private clinic.  It is the first time that we have ever had therapy at a center instead of a big hospital or school and I can't believe the difference it makes.

The two ladies we see are fabulous.  They have never told me about the things that Gracie can't do.  They have always set high goals for her and have never told me not to believe that she can do so much more than we ever thought was possible.

Through all of the hard days, with Gracie having time outs, not cooperating, and needing to end sessions early, they have never lost sight of what Gracie can do.  They have never given up on her, and they have always shown how they believe in her.

Last week, we saw the OT first and Gracie did a great job.  She has made great gains in following directions, staying on task, and she has strengthened her muscles and improved her posture.  She is not as floppy as before, and she doesn't slouch as much as she used to.  She is learning with this OT and having a great time doing so.

Last week's session ended on a great note.  Gracie had signed all done to the therapist, but she tried to make Gracie stay engaged in the activity to try to keep her in the session for the full amount of time.  However, Gracie was really done and went to her talker and said:  Please A, the OT's name, and then signed all done again. 

The OT was so impressed with Gracie actually communicating with her in such an appropriate manner that she ended the session early.  In her usual style, if Gracie wanted to be all done, she would throw the toys, drop to the ground and refuse to get back up again.  But, instead of doing all of that, Gracie actually used her talker and truly communicated to her.

Not only does the OT believe in Gracie, but Gracie believes in this therapist enough to try to communicate with her in an appropriate manner instead of falling back on her old habits.  I truly believe that Gracie responds to people in the way that they respond to her.  If they don't believe in her, then she can sense this, and she won't be bothered with them enough to prove them wrong.  It's like she shuts down and will refuse to work with them.  I can't say that I blame her!

The speech therapist we see is just as wonderful.  Last week, Gracie pushed on her talker:  Remember Dad, and then she hit the grown up sized chair in the room.  The therapist asked Gracie if she was asking if she remembered when Gracie's dad went to therapy with her.  Gracie smiled and then hit the chair again, to confirm that she was talking about when her dad came to therapy with her.

Instead of just dismissing this, the speech therapist truly listened to Gracie, and believed in her so much that she thinks Gracie was really asking if she remembered that time. 

They believe in Gracie, they learn from her, watch and study her, and know what she is capable of.  Because of this, Gracie believes in them, and feels comfortable with them enough to break away from her comfort zone and actually try to communicate with them instead of just using her old habits. 

These are the kinds of people we need in her life for her to grow, learn, and to become more independent.  These people are the ones who actually make a difference in this world, and I can't tell you how grateful I am to them for believing in my daughter.

Bitter

Gracie has started having a rough time again.  She is still not going to sleep in her room like she should be, and she is really tired all the time.  She is still adjusting to her new medicine and it is making her very tired during the day.  I have also seen a drastic increase in her aggression. 

It's the aggression that I have a very hard time with. 

It is just not fair.

It pushes me to my limits.

It is frustrating beyond anything else.

It breaks my heart.

I feel so angry, so bitter, about the aggression.

Gracie is changing.  She is losing her happy, innocent personality, and is becoming this misbehaving, hitting, scratching and throwing child and I don't want that.  I don't want this for my child.  I don't want this for my family, and I don't want this for myself.  I am the one who spends all of my time with Gracie, and I am the one who gets all of the aggression.

I want my happy, smiling, care free, innocent little girl back.  I want my sweet child, the one who had never hit anyone.

Distractions

Thanks to my mom's generosity, Hank and I have been finding ourselves alone every Sunday afternoon.  We have been taking the time to watch some wonderful shows, and to just spend some time together without talking about any of the stress in our lives.  Just me and him.  Alone, with no stress.  It's total bliss.

It all started a few years ago, when The Apprentice first started.  Hank and I would rush to put the kids to bed early on Thursday nights just so we could watch it together.  We would mute the tv during commercials and discuss what was happening and who we liked and didn't like, and what we would do differently.  It was our time, and it was fabulous.

Soon after, Hank's work moved him to the night shift and our Thursday night dates with The Apprentice were over.

It took years for us to find a new show that we really liked.  We tried things here and there, not really finding anything we liked.  Then, while I was at the movie store getting a movie for Gracie, I looked over and saw The Closer.  I grabbed it in the spur of the moment.  I was hooked from the first episode and totally love it.  Hank started watching with me and he is hooked too.  Sadly, the final six episodes will air next summer, then it's all over. 

We've tried a few other series, but we finally found a new one that we like almost as much as The Closer:  Castle.  Both of these shows are murder mystery with lots of drama, but they also have a quirky sense of humor with some romance too.  The perfect combination. 

The best part is that they hold my interest.  I am not finding myself thinking about our stress, or anything else.  I am just enjoying the shows, and being with Hank.  When an episode is over, we find ourselves talking about them, and the story line, and what we think is going to happen next.  It also helps to encourage us to find time during the week to catch an episode. 

It sounds so simple, to just watch a tv show with your husband, but it is the much needed distraction from our every day stress that we need.  It helps to remind us that we have to share share these carefree moments together, and not just spend our time talking about our problems. 

So if you are looking for some good tv shows to watch, I highly recommend these two!

Favorites

Here are a few of my favorite moments...

Sometimes in the morning, as we slowly wake up, Caleb will bring Gracie from her room and into my bed.  The three of us will be in my big bed, covered up and snuggling.  Of course, the dog is jealous and has to join us too.  I will never get enough of these moments.

I love when Caleb gives me unexpected hugs.  It's usually while we are in the kitchen, after dinner, but before bed.  I hope he never gets tired of doing that.

I love when Gracie looks at me, throws her arms in the air, and comes in for a hug.  She will wait, with her arms up, until I throw my arms up, then she will launch herself at me. 

Lately, Gracie has been going into the bathroom, sitting down, and actually going.  All on her own!  Nothing is better than that feeling, when I see her succeed at something we have worked so hard on.

I love when Gracie is so excited to see one of her respite care givers, and she runs to them for a big hug.  I love that she has that kind of relationship with such wonderful care givers.

I also love when she sees the dog at the door, wanting to go out, and she goes to the door and lets the dog out.  How wonderful is it that she is taking the initiative and doing something that needs to be done.  I never thought I would see this happen!

I love watching Caleb play fetch with the dog.  He laughs this carefree, totally happy laugh, and it is fabulous!

I will never get tired of Caleb baby talking to his guinea pigs.  It's so cute to see such a tough guy be so loving with his animals.

I love when Hank is cooking dinner, and I am helping Caleb with his homework, and our eyes meet.  We smile at each other, enjoying the moment. 

These moments make all the hard work worth it. 

Will We Ever Get Back on Track?

We've been having a ridiculously hard time getting back on track since things have calmed down here.  We haven't been doing any school work, and we have cancelled most therapy appointments. 

Through the past month, we have been changing all of Gracie's medicine.  We've stopped a few things, we've added a few things, and we have more plans to change things.  She's having a hard time getting used to the new medicine and she is sleepy all day from it.  However, she still has a hard time going to sleep at night.

That's where we put all of our focus and energy.  Everything else was put aside, as it should have been.  Only a crazy person would have tried to keep up with all appointments and homeschool during that time.

However, I still remember those really good two weeks of homeschooling we had in early January.  I want to get back to that, but the longer we go with our schedule being messed up, the harder we are finding it to get back on track.

Add to that, days off from school for Caleb, Hank's schedule is off right now, and lots of extended family stress, and things are just crazy here. 

I kept Caleb home from school for three days last week, to try to avoid the norovirus that was spreading quickly through the school.  I thought we were going to miss it, however, my niece has been up sick all night.  We were at her house yesterday, for her birthday celebration.  She cut the cake and kissed Gracie.  I still really hope it misses us...

Tomorrow we are going to start to get back on track.  We will be home all morning and I have made new school activities for us to do.  We'll be starting Dr. Seuss and Birthday themes.  Gracie's birthday is coming up and of course, so is Dr. Seuss' birthday.  It will be so nice to have some new activities to do.  I hope that gives us enthusiasm to get back on schedule.

What's Bothering Me

A few things have been bothering me ever since we got the report from the school's investigation.

There are a few staff members at the school who I have come to really care about.  They have worked with Gracie for years, and have been nothing short of wonderful with her and the other kids.  They have been supportive, and have taught me a lot. 

Gracie loves them, and will go right to them and give them huge hugs.  In the fall, I had a lot of comfort in knowing that they were at the school, and I knew they would take care of Gracie when she was with them.  I knew that my child was counting on them to make her feel safe, and comfortable in a very unsafe and uncomfortable situation. 

I now feel that they have turned their backs on us.  I have reports from them and can't believe the things they are saying.  It hurts to think that their opinions of me, as Gracie's mother, are so low.  I'm not sure if this is just because they want to keep their jobs, or if they really feel this way.  I also don't know how any of this was presented to them, and what they were told.  I strongly feel that they were told things that are just not true.

I just don't know how this whole situation has become so twisted that I am to blame for causing such a rift in the school.  How can I be the bad guy, when my child was hurt and all I am doing is protecting my child?  I don't think any of them would be happy if their child had become shut into that closet with this boy.  Yet, I am the one that they can't stand, and I am the one they can't look in the eye. 

I just don't think I can leave it this way, yet I have no idea what I should do.  I worry that if I try to make things better, then I will only cause more problems.  I worry that if I try to do anything, it will become twisted even more. 

A Busy Week

This week has been crazy.  We've had doctor appointments, dentist appointments, therapy appointments, meetings, unexpected visitors, dog grooming appointment, and we still have an orthodontist appointment to get through.

Caleb has had an unexpected week off from school.  His school sent out an email on Monday afternoon, the only day he went this week, that the norovirus is going through his school pretty rapidly.  I made the decision to keep him home from school.  It was a short week anyway, and he did have a few appointments.  I am really not ready for any kind of sickness in our house, especially something that will make Gracie very sick.  Hopefully this will prevent us from getting sick.

Whenever Gracie gets a stomach bug, she gets so sick.  Because of her muscle tone, she can't throw up, which causes her to panic and choke, which causes her to aspirate.  We usually end up in the ER for I.V. fluids, and the last time she had this, they gave her a CT scan to make sure her appendix didn't rupture.  It's just a bad situation and I don't want it.  Especially since she still hasn't been sleeping and therefore I worry that her immune system is even lower than usual. 

We had a bad week this week, with the sleeping.  It was almost as bad as when it first started.  Right now, I am getting her in bed between 10 and 11 pm, but she is acting very scared again and panics anytime I leave her.  I just really hope we can get this settled down soon.

Our poor dog had the groomer appointment from hell.  The lady who was trimming her, left her on the table with her collar attached to the bar over it.  Cabela thought she was free and decided to try to jump down.  I thought for sure her neck was going to break.  It happened so quickly and I couldn't get to her before she leaped.  Then, the bar over the table that her collar was attached to broke and she slammed into the legs of the table.  She was just hanging there.  It was so horrible.

The owner was there and didn't even stop what she was doing to help or to make sure she was okay.  The groomer was startled, but she never even apologized.  Later she told me that a giant dog broke the bar over the table and they just try to make it work.  Yet they are still using it!

On top of that, we waited 45 minutes for the owner to show up for our scheduled appointment time.  Once she got there, she didn't even apologize for making us wait, and then started to clip her own dog's nails first.  Also, when she trimmed Cabela's face, she used the trimmer too close to her skin and made her bleed. 

Needless to say, we'll never go there again.

Tomorrow is Caleb's orthodontist appointment.  He needs braces and this will be our first consultation.  I just hope it won't be too complicated for him, and too pricey for me!  Yikes!

Hopefully, we'll be having a relaxing weekend.  Hank's mom is supposed to have the kids over night on Saturday.  I can hardly wait!

Happy Valentine's Day

Salt tray activities...

Sensory bin and eraser match

Valentine math

Heart match file folder game

Patterns

This is just a few of our Valentine's Day activities that we've been doing.  Our next themes will be Dr. Seuss and birthdays.  Gracie's birthday is just a month away, and we are excited to do lots of fun activites.

What the Lawyer Said

First, I must say thank you for the wonderful comments after my last post.  I was not in a good place, and reading your comments gave me a calmer perspective.  I can't tell you the peace that come over me when I read your words.  Thank you.

I called the lawyer today and you were right, she didn't believe the school.  She did say the principal called her and tried to get out of doing the investigation, claiming the privacy of the boy who hurt Gracie would be violated.  The lawyer told her to refer to the boy as Student A. 

She also told the principal to contact me, to get more information, including dates and pictures.  Of course, she never called me.

Right now, we have a choice to make.  If we want to send Gracie back to this school sometime in the future, then we will continue on with dealing with them.   Eventually, we would have a meeting with the school and the lawyer to discuss ways to keep Gracie safe in the classroom. 

However, I am not sure I will ever send her back to that school.  I know I will homeschool her for the rest of this school year.  I just can't make up my mind about next school year.  If the boy who hurt her will be in that room, then I won't send her back.  If he's not in that room, then I will have to think about it.

I just don't trust these people anymore. Not only that, but I don't like them anymore either and what little respect I had left for them is now gone.  The flat out lies that they wrote in their reports make me sick.  That boy is in the room, and he hurt Gracie, as well as the other kids, and they have made this all about them. 

The lawyer said something that I had never even thought of.  Even if this boy is not in her room next fall, there could be another child who is violent and aggressive in the room. I know I won't trust the staff to keep her safe.   If we have the meeting with the school soon, then we will have strategies in place to keep her safe and won't have to go through this all over again next school year.

I also am thinking of all the positive things I have seen since Gracie started homeschooling.  I like the idea of school, but I just don't think she is learning as much as she could.  I have seen many positive things come out of this and I don't know if I want to take that away from her.

I Knew this Would Happen-The School Investigation

I got a packet in the mail today.  It's the report from the investigation into Gracie's classroom that the school did for the lawyer.  Read this post about what happened to Gracie at school.  Read this post about the lawyer and the investigation.  Read this post from when I first discovered the serious problems in the classroom.  Read various other posts during the month of October if you want to see other problems with the classroom.

I'm not sure if I wrote about how the investigation would take place, so I am going to explain it now.

The lawyer sent a letter to the school, asking them to do an investigation into what happened to Gracie at school, and into the safety of the classroom. 

When I found out that the school was going to do investigate themselves, I was very upset.  I knew that they would blame me for the whole thing, and I knew that they would make themselves look perfect.  I called the lawyer and told her this would happen. 

That is exactly what they did.  In reading over this report, I was livid.

Instead of admitting that they have a safety concern in the room, they were defensive, made themselves seem perfect, and made me look like a crazy, over protective mother, who is making a mountain out of a molehill.  They were very judgmental of me and of Gracie.

If I was the lawyer, I would be much more inclined to believe them if they actually admitted to having a few problems.  I would have a lot more respect for them if they had.

They blamed Gracie's behavior on my being in the room, and they made her look to be a problem child.  I did observe Gracie scratch a para, on the first swim day, but it wasn't as bad as she made it seem in the report.  Gracie's not perfect and I never claimed her to be.  Even if she did have behaviors in the school, she didn't deserve to be hurt by this boy.  Way to blame the victim...

I have no idea what the next step is.  I haven't heard from the lawyer, but she is the one who sent me the packet from the school.  I really hope she isn't believing the school...I will call her on Monday.

My main reason for doing this was to prevent any other kid from getting hurt by that boy, and to prevent the school for making this same type of class next school year.  I'm not sure if I succeeded...

I feel sick about this.  I feel sick that this happened to my child and I feel sick that I forced her to go to this school where who knows what was happening to her.  I feel sick that she had been shut into that closet with that boy and I feel sick that the school did nothing about it. 

She was trusting the school staff to keep her safe, and they failed.  They would not agree to do anything to make sure that she, or another child, wouldn't be locked into the closet with that boy again.  It very easily could have happened again.  They wanted to continue doing what they were already doing, and that is sickening.  This boy was running the class, and everyone was turning their backs and letting it happen.  Any child in that room is vulnerable to him, and a possible victim for him.

I will never be sorry for pulling her from that school, and I will never be sorry for asking this lawyer to try to make things better.  I have no respect or trust left for these people at this school. 

Problem Solving

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

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?

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

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

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

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

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

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?

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?