Wednesday, January 10, 2007

More on Austin

Cindy and Amber- thank you for the comments, I will respond at the end.

It was a long night of discussions with Jeff, my MIL (A's nursery school teacher) and Nancy, his former special ed teacher. Below are some comments that both his MIL and I put together. These will be incorporated into a request for additional services and/or evaluations.

Mom & Dad's concerns-
I am unsure he is emotionally prepared for the independence of k-garten. He still needs direct support for feeding and dressing. He is not 100% potty trained and is unable to prepare to toilet on his own. Other children have picked up on these and he is occasional 'targeted' because of it. At this point when this occurs, he will just find other children to play with. It doesn't occur to him that if he just does it on his own he will be accepted by his peers as an equal.

His medical issues play into the emotional stability as well. Historically when he is having medication level issues or increased activity on his EEG it initially appears as emotional problems. He becomes clingy and needs extra support to transition through settings that would normally be easy for him. We are currently waiting on an EEG to confirm this issue and increase medications as necessary. (I have a call into Dr R in Boston to get his opinion. He has a 24 VEEG scheduled 2/14, but I am not sure I want to wait 5 weeks to make med changes. He's gained nearly 10 lbs since we put him back on Vigabatrin and we have yet to change the dosage. So even though the dosage hasn't changed, he's actually getting less med because of the increased weight. At the same time I don't want to make a med cahnge if there hasn't been a change to his EEG...this is never easy)

Another concern is his auditory processing. He tends to zone out/get lost in active settings. If there is a lot happening around him he appears to have issues concentrating on one single task. To get his attention it requires mom/teacher to get down on his level and direct his face towards yours. Then he appears to connect to you and will respond. Again this could be part of his medical findings. Brain misfiring on an EEG causes disorganization in the mind and difficulty connecting thought processes.

It is important to remember that since Austin is a September baby, and the cutoff for beginning school is December 1st, he will statistically be younger than 75% of his classmates. Based on his extensive medical history (seizures, abnormal EEG findings and brain lesion of unknown etiology) and unstable medical prognosis at this point, we are concerned about entering him into a setting where he has 2 strikes against him already. His father and I feel that with another year of maturity and educational assistance he will be in a better position to excel with less support in a traditional kindergarten setting.

MIL's concerns-
Austin can count by rote to 14 and can count objects, but only recognizes numbers 1-5. He knows the letters A, B, C, D, M, X, O. He understands the concept of same and different. He knows colors & shapes. He also appears to understand the concepts of opposites and rhyming words. (added note- last night Austin was looking at the letter W, he turned it over and said this is for McDonald's and turned it back over and said this is for Wendy's. Aside from the fact that my kids know fast food so well(!!), the fact that he understood the difference was pretty cool to me. And just a note my kids favorite McD's food is the fruit and yogurt parfait and the don't think they are living off nuggets and fries!)

My main concerns are in the areas of small muscle co-ordination and work skills. Austin can't control a pencil or marker well enough to print a letter or number or to draw anything recognizable. He doesn't color, he scribbles. When doing a worksheet he needs 1 on 1 help to complete the page.

At this point, I can't see Austin being able to handle seatwork on his own successfully in a Kindergarten setting.

Austin is social, friendly and shares well. He enjoys doing arts and crafts. He likes to be read to and can answer questions about the story.

It's hard, part of me is saying look how far he has come in the two years of therapy he has received and Nancy reminded me of this. She started working with him shortly after his 2nd birthday and he was virtually non-verbal and had zero play skills. So these concerns are pretty minimal considering.

My biggest problem right now is that I don't know what options are available. My first thought is I would love it if Nisky offered a pre-K program. I think this would be the ideal solution. They do offer an extended day k-garten and/or teacher aide for identified kids. These are great but it doesn't change the fact that he will be statistically younger than 75% of his classmates based on his birthday.

They used to offer a pre-1st program 20 years ago, but I am not sure they still do. I am slightly against two years of k-garten because I don't want him to have the stigma of 'being held back'. Yes I realize I am talking about 5 and 6 year old kids, but if his 4 and 5 year classmates can make fun of him for still wearing a pull up, a 6 yr old will make fun of him for being held back. Plus if he waits a year, he will be in class with Carly, our neighbor. She is a smart cookie and I think she'd be a built in support system for him.

So we are taking steps, but I just don't know where they are going to lead us at this point. Our lives up until now have taken the road less traveled, but we are beating a path and trying hard to find our way. We'll get there...the journey is far from over.

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