Walking on Sunshine

The summer could not be any hotter. (Well, they could but then I would be in a puddle in the corner and wouldn't be able to write to y'all.) I also can't believe that it is already the end of July. Whoever said that the summer was a time to relax didn't have kids. Since school got out at the end of June we have: driven to Nashville and back, started back to school (for James), [I] led worship for VBS, had two sick boys, taken K to Gymnastics camp, celebrated at least a half dozen birthdays (with at least a half dozen more to go this summer), had Thanksgiving dinner in July... I am sure that I am forgetting something...

But I have yet to tell you about some of the more exciting things that have happened. About 2 weeks ago Dave and I met with a Nutritionist who specializes in ASD kids. She gave us a "plan" and we have embarked upon a new adventure. On Sunday we started enzymes with James. It has been 2 full days and he seems to be doing well. So I think tomorrow or Thursday we will go from the 1/2 dose he is taking now to the full dose. There is always the chance that these treatments will at first cause James to go "backwards" but the end result is almost always improvement.

Also, James will be attending a full day autism program in the fall where...wait for it, wait for it... THEY are going to potty train him. I know I couldn't believe it either when they told me. It isn't that Dave and I don't want to (alright maybe we don't want to) but its just that we aren't really sure HOW to. So I will keep you all up to speed on that as it progresses.

The other great news is that John has started walking. I don't mean that he holds on to the couch and walks around the living room perimeter. I mean he stands up and puts one foot in front of the other and takes a couple of steps and then falls on his butt. We have tried to get it on film but of course as soon as you turn on the camera all he wants to do is eat it! So we will try sneak some footage when possible and share.

I will leave you with 2 great pics. One is Kayla climbing the dugout pole in Nashville. The other is one that my Mom took of the boys. Enjoy!

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.

Transitions Part 2

For all of you who were wondering how James has faired after a week of the "new plan" I thought that I would send out a followup post. Tuesday and Wednesday were extremely difficult. I don't think that we could have ever been prepared for the struggle that James had. Yes, he had many transition "inspired" meltdowns in the past but those are almost completely gone and when he does have difficulty with a transition or change now he can usually navigate through it with much more ease. I reread my post about Tuesday and I don't think that I was able to capture the extreme level of difficulty that he had and I am still not sure that I could. The frustration and meltdowns continued on Wednesday. His exhaustion worsened and on Thursday he was soooo exhausted that after returning from picking Kayla up from school he just lost it. He burst into tears and couldn't even stand up. I asked him if he wanted to eat lunch (our new normal time) and he just sobbed "No!" So now I am panicking because it is 11:15 and his bus comes some time between 11:50 and noon. What does he want? What do I need to do to make this easier? So I asked him if he wanted to take a nap or eat lunch and go to school. He screamed nap. So I reminded him that if he took a nap that he wouldn't go to school and he just pointed to his room. So I put him to bed without lunch and called the bus company and his school to let them know that he was not coming to school. He took a somewhat short nap but it definitely helped. The of course there was no school Friday because we got about 6 inches of snow!

So Friday night Dave and I went into crisis recovery mode and decided on a new schedule. (I should also mention that Kayla was soooo much less than pleased with this new schedule. She didn't like the idea that she was napping by herself and I think that she was jealous that James was getting one-on-one time with me while she was at school and while he was at school she was having to nap.) Now James gets special Mommy Time in the morning while Kayla is at school. Then after we pick her up we have lunch and hang out until the bus comes. Once he comes home we unpack and read a story and then everyone gets a nap - including John. Kayla loves this new nap time. She is always tired by then (3 pm). James doesn't always nap but he has to rest in his darkened quiet room. And Mommy gets a much needed respite from the crazies!

It means an adjustment on my part and rethinking the way that we used to do certain things. It is also going to require us (Dave and me) to think about when and how we participate in certain events. But I think that this will be the best thing that we can do for everyone in our family.

Transitions

Today marked another big day in the Gater household. James went back to school today (after the 4 day weekend) and joined the 4-year-old class in the afternoon instead of the 3-year-old class that he had been in during the mornings. The decision was difficult and easy to come to at the same time for David and me. Difficult because it is hard to know what will be the best placement for him. Is the time of the class going to be a problem since it means that he definitely won't be napping anymore? Will the fact that we will still drop Kayla off in the morning but then not go to his school as per the usual cause him to melt down? Will the change affect one or more of the rest of us? Easy because we knew he needed a change and that something had to give.

So we chose this solution... for now. And yes, the answer is yes to all the above questions. It has been a very difficult day and James has not been adjusting well at all. Things that were once easy, no-brainer tasks are met with absolute refusal and claims like "I can't!" or "I don't want to!" He is also exhausted. Getting up as early as he does (sometimes as early as 6:00) and then having no nap or rest time has caused a very early bedtime tonight of 7:30.

Hopefully this will all smooth out over time otherwise we may be in for a very long, very cranky year. Please continue to pray for all of us as we adjust. Please also pray that if there is a better placement for James available out there somewhere that we would find out and make a way for him to be there. But for now we are hopeful that the older classmates (most are 4 and some are 5) plus the more advanced Kindergarten readiness objectives in the classroom will offer James the stimulation that he desires. And as usual any suggestions or assistance are greatly appreciated.

2nd Grade

James had an appointment with his developmental pediatrician yesterday. It went really well. Unfortunately Dave couldn't be there with us because he had to come home to be with Kayla and John but James and I managed. I have to just say that I love this doctor and her staff. We haven't been there since January and her assistant recognized James immediately and commented on how much he has grown.

Some of the more interesting/exciting things that came out of this meeting:
She wants to leave James's diagnosis as Autism Spectrum Disorder for now. I asked her about the possibility of Aspergers Syndrome (AS - the very high end of the spectrum) and she hesitates to give that diagnosis so young for a bunch of reasons. She isn't ruling it out completely yet but said that when he is a bit older she can administer some IQ tests that will help her get a better determination. My understanding is that kids with AS don't generally have language loss (which James had) and usually are on par verbally by age three. They generally just have extreme social delays. So we will see.

James is NOT hyperlexic. I know, I know... I have been hard core thinking this but I learned something very interesting yesterday in this area. Hyperlexics don't read with or for comprehension. They are simply decoding symbols (ie letters and numbers) and producing a string of words. Which leads me to my next point...

James is performing academically (in her opinion) at a 2nd grade level. Yes, you read that correctly. James read her a short story which was just printed words on a page. Then she asked him some basic questions which required some abstract thinking. (The story was a bout a yellow cat and what he likes and dislikes. So being able to answer questions about someone/thing that isn't actually there requires abstract thinking.) Then she asked him to do some basic addition and subtraction through a verbal word problem and he got that right too. (If mommy gives you a cookie and I give you a cookie, how many cookies will you have? Then if daddy gives you another cookie, how many cookies will you have? If you eat one of the cookies haw many will you have? etc.) So I of course said what are you recommendations for harnessing this power for good and not evil? ( a phrase I use a lot when referring to James) She said we could either have him moved up to the second grade where he would be on par academically with his peers but very socially delayed or we could amend his IEP to include one on one instruction in reading and writing. Oh, I forgot to mention that he is writing even more now. He demonstrated this for her by writing MOMMMY and JAMeS (his spelling choices).

So once I have something in writing from her we are going to go into the school and make some serious changes. They probably aren't going to like this but they are required to give him and appropriate education and I think that this is what we need to do. She mentioned some other things but over ll she was very pleased with the gains he has made in the last year and is encouraged for his future.