Wednesday, May 28, 2008

Blessings Abound!

Once again I have managed to be so overwhelmed this last month that I have neglected to share with all of you some of the cooler things that have been happening here in NJ.

John has been growing in leaps and bounds. Gosh, I think that it has been 3 weeks since John started crawling! I know that it was a Thursday does that help??? Let me tell you, he is a speed demon. He can cross the room in seconds and not 30 I'm talking like 5! He cracks up over everything - namely his brother and sister. A few days later he pulled himself up to standing. And you can see when he stands, the way he moves his feet, that he will be walking any day now! (A little history lesson here: Kayla walked at 9 1/2 months and James at 10 months. So given that John has pretty much developed in the same ways that they have I am guessing any day now John will just stand up and walk across the room!) Oh, and again in true Gater fashion John has gotten two more teeth (yes, at the same time).

Kayla must have mountain goat or monkey blood or something. Why? you ask. Well, because that child likes to climb on or hang from any and everything. Her goal seems to be to freak me out at every turn. This past weekend we went to the Shore for Memorial Day. Monday morning we took the kids to the playground at Sunset Park where they have a 10 or 12 foot rock wall for kids. I saw it and thought Kayla would love it. Then Dave tells me that he watched her do it already. So he climbs up the other side after James and I encourage Kayla to climb up to the top where her Daddy was standing. Well, not only did she not need any encouragement, she didn't need any help. She flew up that wall like she had been up that wall a hundred times.

James, James, James... where to start. His move to the 4 year old class back in February has been great for him. Being home "by himself" (John naps almost the entire time Kayla is at school) has allowed him to have quieter time to work on fine motor skills and play computer learning games that have challenged him in other ways. But something else has happened that is amazing. (Well, this is less about James and more for James.) At the end of April I had a meeting with his current teacher and case manager. They had one opinion and Dave and I had another. They thought that for the Fall he should stay in the classroom that he is currently in. We felt very strongly that this would be a bad idea. First, it is a class that he has already been "doing" for the past 3 months. Plus, all the kids moving up into the class would still be significantly younger than him (part of the problem and why we moved him out of the 3 year old class). So I called SPAN (Statewide Parent Advocacy Network) and they sent me a packet of information written by the NJ Dept of Education called Autism Program Quality Indicators that gave me a lot of information regarding what a high-quality program should be offering to students with Autism. However, this is not the LAW. So we prayed that they would see how these points will benefit James and his development and that they wouldn't be completely focused on their budget and what the administration might think.

So the meeting wasn't great but it wasn't awful either. They were pretty set on him staying where he is. I did however say some things that made the case manager write in her notebook furiously! I noticed that when I quoted the law they both looked a bit surprised. I was careful to not get defensive. But at the same time I stood our ground. One of the things that left me with a glimmer of hope was that the case manager agreed that she needed to talk to the Home Programming Coordinator who had come out more than two months prior to evaluate James at home.

We saw James's Developmental Pediatrician the last week in April and she had only glowing things to say about James. I mentioned to her the document by the Dept of Ed that talked about the recommended program for preschoolers with Autism. She told me that just after our last visit (Nov '07) the AAP (American Academy of Pediatrics) published a document saying the exact same things! So that was definitely her recommendation. (Finally the AAP recommendations are paying off for us!) On May 6, James's case manager called to let me know that she had observed James for about 45 minutes the day before and "observed several atypical behaviors." (DUH!) Then she said that the programming coordinator was going to be observing James that day at 2 pm. In short they are revisiting the idea of having James go to the full day class for "High Functioning ASD." Initially they thought that this class would not be a good fit for him because most if not all of the ASD kids in it are lower functioning than James BUT the morning half is an integrated class with other typical 4 year olds. So although we have some reservations (and they are very slight) about him picking up the "bad" behaviors of some of the other ASD kids in the class, the afternoon is primarily 1-on-1 ABA and so James would be working with a teacher in a semi-secluded environment. They can also adjust the "teaching" more specifically to meet James's goals. Plus this means he would be in-district (not bussed to a school as much as 30 minutes away) and still a part of the local community. So after the coordinator observed him his classroom teacher, case manager and program coordinator sat down and discussed what they saw.

The very next day the Autism Programming Coordinator called. She observed James and then spoke with James's classroom teacher and case manager and they are recommending that James go to the full-day high functioning class. It is integrated with other typical 4 year olds in the am and then more intensive instruction with just the ASD kids and 2-3 teachers in the pm. This is good news!!! One of the major pluses of this class is the highly individualized nature of the instruction. So James will have someone always directing him and keeping him focused so that he is less likely to be idle. (Idle time for James leads to excessive mouthing of his hands and other objects, babbling and baby talk, or visual and verbal self-stimulating, to name a few.)

The following week the coordinator came over to discuss the goals to be included in James's IEP for the Fall. I was expecting her to talk about things like holding a pencil and cutting with scissors. Instead she showed up with a print out of the curriculum goals for the combined K/1st grade Autistic class. She said that it didn't make sense, given James's academic level, to confine him to age appropriate goals.

Fast forward to today, the coordinator, Cindy, was here this morning to work with me and James. One of the first things that he did was begin reading to her. About half way through the story she said, "We will definitely have to include him in the K/1 class in the Fall." Huh? She repeated herself and I couldn't believe what I was hearing. So during the time of the day that makes me the most nervous (when the only students in his classroom will be the other ASD kids with potentially negative things fro James to pick up) occasionally James will be pulled out and included into the K/1 class!!! Can I get an AMEN?!?!

Basically our fears and stresses continue to be taken away. It's about time! There are other things to share like the potty training that Cindy wants to start soon and the sensory diet that she can't believe James doesn't already have. Ahhhh, I have actually felt the weight lifting off my shoulders recently and I have to admit that it feels good.

I will try to post some pics soon. Especially since Dave got some really great ones down the Shore.