Wednesday, March 28, 2012

Cognitive Issues Again?!?!

Today I printed out a lot of activities and flash cards to start working with Matt on reading.  Matt has been doing really good cognitively lately.  I got home tonight and we were at the table.  He could not remember his alphabet, the sounds of the alphabet or what  the letters looked like.  WHAT?!?!  I really hope and pray it was just because he is tired.  He still hasn't caught up on sleep from the weekend.

Another Change In Me

About 10 years ago a friend told me after a conference that people were allotted a certain number of words each day. Women had on average two or three times as many as men. It makes a lot of sense it explains the reason when you haven't said much all day and you find someone to talk to at night you talk their ear off as well as when you find you have to talk more than average you find yourself exhausted and all talked out.

I realized yesterday my average number of words has gone down significantly. I went to a play group that Matt was too tired for so as we were leaving early Matt fell asleep. At this point it gave me a chance to talk to the other moms. It was really nice to talk to them, I really love my playgroup, they are great. I think Matt is one of the only if not only special needs child in the group and they are all great. They are even understanding of my long absences.

After my playgroup Kevin asked me to pick up his daughter so she could stay a few nights. That girl can talk! She is also four and is never at a loss for words. I found myself answering question after question and commenting on every sentence. It was exhausting. I was more than talked out. Matthew tried to talk to her but she can't understand him so she would ask me to translate. More talking.

Since having Matty who is verbal but doesn't have a lot of words and a husband who works a lot, my average number of words has seen a major decrease. I used to talk and talk, now I am at a loss of words often. I meet new people or see old friends and I can just stay there silently. I am very comfortable in silence. The old me would never even think that phase, the old me was completely uncomfortable with silence. I don't honestly know how I feel about it, at this point in life it has become such a norm I can't even imagine thinking the other way is better.
I also don't have many words on Matt's eval. He did much better on receptive than I thought he would. Unfortunately I haven't had any results yet so I don't know where he scored I am not sure when I will get to know them. The eval was hard! I felt awful for Matt. I also think if is so unfair to do a verbal IQ test on him. One eval we had at the autism center was non verbal, he did amazing and really enjoyed it. This one was so hard for him, it broke my heart. I don't look forward to the results, whatever they are it will not be accurate.

Monday, March 26, 2012


I couldn't sleep tonight, I have been up for about 4 hours.  Today we are going to Matt's developmental pediatrician.  She is doing a full eval on him with her team.  This isn't for diagnostic purposes because Matt's problem is as she puts it "medial" there fore it doesn't have a DSM that these types of teams usually use to give a diagnosis.  This eval is for the sole purpose of having a good marking point, in case we need it to mark regression.  Matt's first eval with her 2 years or so ago was kind of crazy.  She had to be out of the office and Matt wouldn't corporate.  Matt's doing a lot better behaviorally so today should be a good eval.

I am not sure who reads my blog but in case you don't know these kind of evals include 4-6 specialist, and lots of testing.  We are planning on being there a minimum of 4 hours. We have had at least 3 of these types of evals those I was very nervous.  I was nervous about weather there would be a diagnosis, what the diagnosis would be.  How Matt would do, if he was going to do better than he had ever done (he test really well) and they would just think I was crazy.  Today's eval isn't like that.

I know the Doctor very well, she is very familiar with Matt.  What I am nervous about it I honestly have no clue where Matt stands in any area.   I don't have a realistic idea of where he is in speech, problem solving, gross motor, fine motor etc.  I am nervous to see it, in my head I am thinking he will do pretty good, he has always tested well in the past and he has had a good week for the most part.  I am nervous about how I am going to feel if he doesn't do well.

One of the evals he had done they did a non-verbal IQ test, they were amazed at the results, he tested off the charts literary.  The IQ test went to I think 160 and they had to figure out how to add points.  He tested over two years above his age.  I don't think today will have a non verbal IQ test, but I am still worried if they do how I will handle it if he doesn't test well.  Also he has also done really well on problem solving, I don't think his problem solving skills are where they should be, and I really don't think they are higher than his age.

Maybe I will be blown away by how well he does... I don't know, for whatever happens I am nervous.

Thursday, March 22, 2012

Different Worlds

Living in the autism world and the special needs world for so long I see things very differently.  This morning I went through my blog list seeing the updates.  There is a wonderful blog with lots of free printables I follow.  This morning I go to the blog and this is the printable they have.

In the autism world and probably the special needs world in general, the moment a neuro typical kid comes to your door asking if your child can play is one of the happiest moments, you have ever imagined and feared you would never have.

I can only dream that maybe one day I will need a sign like this..

Wednesday, March 21, 2012

My Blog is Boring..

 I was looking back at old post they are pretty boring.  As a child I was a pretty good writer, as an adult those skills have diminished.   I can barely get through old blog post.  My infertility blog was much more interesting, that is probably why I had more followers.  

Looking back at old post I seem so naive.  I am sure when I look back in a few years I will think the same thing.  Waiting to see the neurologist the first time, thinking that he would have answers, HA HA HA!  Now as I wait for another specialist, hoping he has answers but now knowing there is a good chance he doesn't.  

Matt is having a good day today, he did really well in PT, he got to go outside which he loves!  There will not be many outside days left.  Pretty soon the heat will take over.  I hate Texas summers.

Last night about 7:30 Matt came up to me and asked for his meds so he could go to bed.  This was a nice surprise.  He wanted to give himself the medicine so I let him, but one of the tubes got everywhere expect his mouth and he wasn't able to fall asleep.  Finally about 10 he fell asleep.

Matt drinking pediasure out of the container for the first time. He had a little spillage, but not too bad.

Monday, March 19, 2012

Some days are just hard.

Today I had to do the worst thing I have ever had to do.  I won't go into it on here, but it wasn't fun.

I think that just put me in a blah mood.  I hate that everything is about waiting.  I reviewed Matt's PT eval, it is frustrating.  The PT is frustrated by it, Matt's days vary so greatly it is hard to get an eval from just one day.  It was sad to see he is at a early 3 year old level.  Speech he is still in this 2's.

There is a blog I read, I have read it since she was working on her adoption and have followed it through her little girls life.  The little girl is a little more than a year younger than Matt.  It is really sad to read the blog because the proud mama (as she should be) post all of her little girls accomplishments (as she should).  It is so sad to see her surpass Matt in every area.  When I started this journey 3 years ago I really never thought Matt would be the kid with global delays.  He thrived in so many areas even though he had issues in a few.  Now in every area he is behind.  I don't know one area he is typical in.  This alone is so very hard.

I do believe Matthew is so amazing.  He is so sweet.  I really do believe he is my perfect little boy.  If I lived in a world with only him I probably wouldn't feel so down.  The reality though is I see all these other kids doing so much more and it is hard.  On facebook the other day I read an article about some number of things about special needs parents.  One of those things said "I'm jealous" this thought was so true it made me cry.  I hate how jealous I am, not just of neuro-typical kids but also other special needs kids that have gone so much father, or other diseases that have more hope or more acknowledgement.  It is really hard for me to admit to being jealous, it is a part of me that I really wish I could hide.  I wish it didn't exist.

Saturday, March 17, 2012

Beads Cont

I started Matt's beads today, he was really picky about the beads he liked, he really likes circles.  He was okay with ovals.  Going though the beads today I heard a lot of Nos!
To start I added his two doctors visits we had this week, that is the white and black beads.
I added clear blue balls for all of his current daily medications.
Then I decided ever he should have a ball for every 6 months of therapy he has had.
Clear green balls are for speech therapy.
Dark green clear balls are for occupational therapy.
Clear balls are for physical therapy.
That is all I am adding from the past, there is too much to remember from the past, I mainly added the therapy because I thought he should have something to show from the past 3 years, plus it was easy to know how long.
He was sleeping when I put them together I hope he likes them!


I recently heard about bead programs, they give a special bead to your child after every procedure they have to go through.  It was started for children with cancer and I think is spreading to other illnesses as well.  I hate having to see Matt go through so much pain, I hate all of the doctors visits, blood draws, MRIs, sedations, new medications, loss of skills, and everything else my son has to go through.  It is hard for me as a mom and I know it is so much harder for him.  I think I am going to start to give Matt beads, I am not sure if he will fully understand the concept, but I want him to know how brave he is, and how proud I am that he is such a big boy and even though he doesn't have to do these things that hurt so much, he does them.
I think he deserves to have something to show for it.  I also hope it will help my family to see what he goes through.  I know they know he has medical issues, but I also know, they don't know what his daily life is like, they can't understand the magnitude of his illness on his daily life.
Has anyone else done this with their child?  I know in my mito group one mother in Houston said that the hospital her son goes to has this program.

Monday, March 12, 2012

I don't want my son to die

To be fair I don't want anyone's child to die.  It is so unfair.  We have been looking into Mito, I knew mito could be terminal, I read a statistic today that said "It is a serious disease - 80% of children diagnosed with a mitochondrial disease before age five won't survive to adulthood." I hope it isn't true.  I knew  being mito there was still a chance that something in Matt's body was killing him, I had no clue it was that high of a chance. 
I hate this............

Friday, March 9, 2012

Back to Himself

The extra energy and hyper activity only lasted a day, that night I gave him his meds at 7:30 and he was out by 8 sleeping till 10:30.
Today I am annoyed with our OEM (person who provides Matt's disposable medical supplies.)  We have been trying to change formulas for about a month.  It took the doctor a while to get the orders right and then the insurance have to approve the change.  The formula we are changing to is about twice the price of his current formula.  I was told on Monday it should only take 3 days to get the approval, I called today and it wasn't approved yet.  The customer service rep told me she would call the insurance company and call me back to tell me what they said.  I called a few hours later and couldn't find out any information.  Finally at 4 o clock I called back and found out the insurance company said it was still under review and couldn't be sped up.  I called my insurance company and got it approved but since it was at 3 they couldn't do any thing with the approval till monday!!!!!!! UGH!!!! Another weekend with out the new formula.
I haven't been giving Matt his night dose because it causes him to vomit up his meds, so trying to get calories down him is like pulling teeth.  He woke up early this morning because he was so hungry.
The earliest I will get the formula now is  Tuesday.
Not much other news, most of my life right now is just waiting.  I hate waiting.

Wednesday, March 7, 2012

New Days...

I don't know if Matt is changing or if today was just an odd day but last night Matt only slept 12 hours and he was hyper a lot of the day.
Matt woke up about 9 am and we had planned to go to the park with my friend, it was a damp and drizzling but we still chose to let the kids play.  We played for an hour and by the end he was so tired he could barely walk.  His gait looked like he had his shoes on wrong and he was walking on his heals, but his shoes were on right.  There was a few minutes I really didn't know if he was going to be able to continue walking.
After the park we ran to Target to pick up meds, instead of walking he chose to ride in the shopping cart.  By the time we got home his energy had returned.  Matthew had 3-4 hours of bouncing off the wall.  I haven't seen this side of Matt in a while.  We had an OT eval today and I kept telling the lady doing the eval this was not normal of Matt.  I am scared that all of his goals are going to be based on hyper activity, which lately Matt is anything but.
Tomorrow we are planning on going to Sea World so I gave  Matt his meds early.  I usually give them to him at 8 and he is asleep by 9, tonight I gave them to him at 7:30 and he was asleep by 8.   Hopefully he will sleep through the night and be in good shape tomorrow at Sea World.  If Matt doesn't get enough sleep he has a tendency to be very hyper.