Celebrating Inchstones: To school or not to school

Thursday, August 12, 2010

To school or not to school

Before you start, pardon all typos! I'm blogging via mobile device because we are having a storm and
can't use the big computer. Also can't edit very well! Carry on...

I'm usually behind on things. I forget appointments until the last minute. If I don't put an appointment on the calendar you can count on it being overlooked!

And this is how I thought Asa's IEP for school was going to be! He won't start school until he turns 3 in October but before then we have to have a big meeting with EI, teachers, therapist, school officals, doctors reports, me and Asa. And there are 2 school choices for Asa. That is no small feat!!

Then somehow I messed up n the date of the IEP! I wrote it down as August 20 instead of September 20! Quite a difference! So in a panic last week I called one of the schools for 3 year olds with a special education class. I had an appointment to tour the school at 10:00am this morning. Boy, I was nervous!!! I was jittery, queasy, nervous!!! Not a good day to try out a new deoderant! It was only after I got to school #1 that they told me the IEP was a month away not a week away! That sure took the edge off!

School #1 was good. It was fine. The people were all very nice. I met the PT who will see him no matter which school he is in. I saw the gym and the cafeteria. I saw one classroom and met the teacher. The class looked like a regular pre-K class. There was circle time and blocks, books and tables, art eisles and paint. There was only 2 little boys in the class at the time. Both classes are half days so the afternoon crowd may have been bigger. There was a teacher and assistant in each class and usually 5 or 6 kids. Not bad numbers! The whole school is a pre-K school with a mix of special ed and typical classes.

While I was at school #1, they mentioned a "medically fragile" class at a nearby school. I've heard of this class before but never really thought of Asa as medically fragile. I thought I might as well try to tour his school and medically fragile class today too. Asa and I had an hour to kill and then off we went to school #2.

Like I said, both classes have half days and we arrived while the class was between students. The teacher had already heard of Asa. Does this mean he already has a reputation!! NO, they just have to plan for a certain amount of students so they already have an idea of students that might be coming in! Anyway, this classroom looked morelike a therapy gym to me. There were gait trainers and standers around for the kids to use during the day, not just PT time. There was touch screen computers and switch toys. They still had circle time but with rifton chairs. And I was drawn to the spectacular changing area! Not sure what it says about me that I was excited about the changing area!! Lol!

So what did Asa think about school?! He started out the morning not wanting to eat. He fussed and fitted. I finally said "if you want to go to school, you have to drink you cup". And he stopped fighting, picked up his cup and drank it down!! Really!!! At school #1 he was fine. He was friendly with the folks and didn't really fuss. At school #2 Asa was good as well. Then he reached up for the teacher from his chair!! She got him out and he started stepping around the room exploring! He went to the mat, played with a toy or two, walked around some more!!! He made himself at home!! He didn't want to leave! Before we left the teacher gave me her home and cell number! Now that is a brave woman!!!

So as you can probably tell, Asa and I both liked the medically fragile class at school #2! now I almost hate to wait until October for him to start! There are other medical kind of stuff and IEP stuff but so far so good and even a month early!!

2 comments:

Meghan Clement said...: Kim and Asa,

Wow, the 2nd school sounds great! You are lucky that you have a choice in schools! Isn't this process exciting and scary at the same time?

Love,
Meghan; August 13, 2010 at 9:09 AM
gg said...: I remember the fear of sending Bricen last year, but school was so good for him.
He finishes his first week of school for this year today. He was SO excited to be going back. There were no tears; he walked into his old classroom, said "circle time" and went and sat down!!
Sounds like school number 2 will have the same effect on Asa (and you).; August 13, 2010 at 10:23 AM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!