Sunny and Bright

Well, Friday was better, but still had issues. Many were the emails that crossed between the doctor and I. Aside: I like that you can attach files or photos in the messaging system to our pediatrician. Very handy for rashes and showing messy things that should not be brought into a doctor's office.  Friday and Saturday nights, however, were excellent-- full night's sleep for everyone and no more moaning! OMG, the constant moaning does us all in.

Saturday, James was back to eating regular foods. Not his regular amount, but hey, he ate it with relish and it all stayed down. Then came the mystery BM in the afternoon. Neither kid owned up to producing it. After a lengthy parental CSI debate, my husband and I deduced it belonged to James. Hooray!

James was back to jumping on the trampoline and doing more than lying on the sofa with his iPad. I even took him to the gym with me so he could play in Kids' Klub while I worked out, and was told he had a good time. He asked to have his sister's kitten come out and seemed to enjoy the kitten mayhem that ensued.

Today, he is very affectionate, hugging me and having conversations. As I type this, he's doing math and spelling with me on his Magnadoodle. I have noticed that James is talking now, and not largely stimming or asking the same question repeatedly. It's like someone took a lid off and we can see the person inside and interact more with him.  He is being funny on purpose, calling Jack Skellington "Jack Frosting" and renaming challah bread "jolly bread." He's making quiet but thoughtful remarks and requests. We even played together building Leggos, which he's never done before, despite encouragement. More on that tomorrow.

Magic Marker Monday: Crayon Prowess

James has a love-ate relationship with crayons. That's right, "ate," and I bet you can guess what that means.

When not coveting or biting into those waxy, paper-covered cylinders of the rainbow, James has tried to colour. At first, when he started showing an interest in objects, he had a lot of trouble just them picking up. His grip could best be described as a rigid fist for the next year or so. He would either do a few tiny, circular doodles or go off the paper in a kind of frenzied, Richter-scale kind of kinectic storm.

And very soon into the performance, the crayon would snap. And tears and a howling distress followed. "It's BROKEN!!!" he'd bellow. Later, as his vocabulary improved, he'd add "Can you fix it?" Sigh and colour us blue as we'd stop and put the crayons away in their box.

This is what James accomplished, during his class' Easter party last month:

I know he has a one-on-one aide, but look what James can do with this assistance. And because I was there, helping with the event, I know that even with a noisy party, and a reluctance to finish this activity, no crayons were broken.

I look at this and see so much better control of the crayon and behaviour. I see a masterpiece.


For more great masterpieces or to share some of your own, visit
5 Minutes for Special Needs for more Magic Marker Monday.

                               
 

First Spelling Test

James has been practicing his spelling words for the first time ever. His teacher and I are in agreement that we will just try treating James as much as a regular student as possible and see what happens.  So James practiced writing the 10 words and 2 bonus words. They are part of his core words and reading assignments as well.

This is the result:

He got them all correct. Wow! Go, James -- I am so proud of you!

Last year this time I was proud that he could write his name on an entire piece of paper. A year and a half ago, I was advised to put him in a special day class and not mainstream him. I think of this every time James makes a breakthrough that is largely due to being mainstreamed. I am not blaming anyone, it's more a pat on my back for listening to everyone's input, but my most of all to my own heart and my husband's about James. Also we are thankful, for all the help we receive that makes this possible. He has quite the team behind him.

Combs and New Discoveries

I read about some exciting research that came from the MIND Institute that two distinctly different types of biological Autsim have been studied and confirmed. I find this both fascinating and exciting, because it confirms some of my experiences with James and gives me hope for the future.

How many of you have heard the phrase "You've seen one person with Autism .... and you've seen one person with Autism"?

 *Raises hand*

It's felt so true to me. Especially from the days when I first started to really admit to myself that something was not right with James' development. Everyone had their opinion as to "was he ok / was there something wrong," with many people of the former opinion than the latter. Right up to his pediatrician who told me "He can't be Autistic - he looks you in the eye."

I could see their point, and still can. James, while exhibiting some classic Autistic traits, has always loved people and openly shown it.

Even during the scary period of time when he'd "zen" out and stare off into space, not responding to his name or a hand waved in front of his face (and we became scared that he might be having mini seizures) he'd gravitate to a group of people hanging out and socializing. He loved playgrounds and never retaliated with force or biting when some of the kids played roughly in the sand box or rocking animals. He had gorgeous, enormous blue eyes and he'd smile so sweetly at you he'd melt every heart in a 25-foot radius.

And yet ... I felt a lack of connection with him. He was spookily calm, and made noises like a squawking parrot rather than a toddler to communicate. His fingers and wrists splayed at odd angles, almost frozen. He could hear a pin drop from halfway across the house, loved music, and his big sister. He did not line up his toys, yet he did repetitive motions and loved to spin things.

At the CAD Clinic, it was informally thought that James would test at Pervasive Developmental Disorder-Not Otherwise Specified (PPD-NOS), but in fact he tested with more severe needs as Autistic Spectrum Disorder (ASD). One of the clinicians explained the findings as James having both strong strengths and weaknesses, with the former being the teeth of a comb and the latter the comb's gaps. In some places the teeth (strengths) had no gaps, in other areas, some teeth (strengths) were missing, forming bigger gaps.

I like the comb analogy. Do you know how many different types of combs you can find at a store?  Think of all the combs you've had -- many different types, yes?

Now just think if further research enables us to identify and categorize Autism as we now can tell the difference between a pocket comb, a pick, a flat-top styler ... and then builds therapies that match them and helps those on the Spectrum to led lives that are as happy, productive, and independent as possible. Oh, yes, I am getting excited all over again. I think this is on the right track.

Lessons Learned

I received a call from the Services Coordinator at James' school, a day before the informal meet-and-greet for all students and teachers. She was asking me about how our summer went, and more specifically, if I had James' box, so she could get it to his new aide. "What box?" I asked.

Well, evidently it's the box with his IEP, visual cue cards, daily scheduler, and other confidential information. I say "evidently," because I never saw it at said summer school, which was not a very good experience, BTW. After doing some checking on both parts, I reconnected this morning with the Services Coordinator, who was able to assure me that his records had stayed at the school, and that in fact she'd sent folder with the visual aids and his plastic cube chair, both of which had been returned.

That's interesting, because I never saw those, either. And I was there, observing the classroom, because James was not happy and the teacher had complained that his behaviour was a problem. I observed them putting James in a regular seat, not using the cube chair until I specifically asked if he could sit in that and have it be his chair. The staff never looked in his folder and another aide shared her visual aides to help him along. I noticed other things happening too, and ultimately had a couple of high-level concerns prompted me to phone the head of Special Ed to share them and ask for help in resolving some issues. That was a first.

I am frustrated because there was little to no coordination of communication between James' regular team and the summer school team. This set us up for a rocky summer school session. I am mad at myself for not being more pro-active.

Lessons Learned:
* Ask for more detail from regular school team, especially Services Coordinator,
about who is teaching and what they'll be doing over the summer.
* Pick up materials for summer school myself and review them with his team
* Be available to meet and review said materials with summer school team as
early as possible into the summer school session.
* Come up with a few clear goals for James in summer session and communicate
them clearly to the team.

I am writing a letter to his Services Coordinator, reviewing what worked and what didn't work for James with this summer program, so that next year's is a much better one for us all.

Transitional IEP

Today brought something I'd been hearing about for the past 2 years: James' Transitional IEP as we start planning in earnest for Kindergarten this coming Fall. Compared to some other things we'd been through, it was mild and not the big verklempt moment that I'd been expecting. I am assuming now that will start hitting me mid-April, as we begin to prepare for James to leave his loving little preschool environment and head out into the larger waters of KinderOcean.

It helps that the meeting was held at the school my daughter currently attends, and that it looks as though services will be maintained in a full-inclusion environment. Although nothing can be finalized until all forms are completed, signed, and triplicated with blood offerings. Made that last part up -- I think.

What a difference between then

and now

A Child Is Waiting

I was up late last night and saw the beginning of the 1963 movie A Child Is Waiting.

I had to turn it off, it disturbed me so much. Because the opening sequence haunted me. If we'd had James 40 years ago, he would have been that boy and we would have been told that our best hope was to institutionalize him.

Our sunny, funny, smart James.

Seriously, I have tears in my eyes as I get shivers down my spine, just thinking about it.

If you want to read more, check out this blog post.

Night Swimming

Not only do I like the song, I like to do it too. Which makes it a great posting title, but I digress ...

It's been unusually hot around here all week. Roast, roast, crisp, and schizzle! James does not do well in heat. He melts and gets cranky. The school buses and summer school do not have a/c. Thank goodness he's back home before 12:30pm!

So on Friday, I took he and his sister to the gym's pool after dinner, right about sundown. It was still like 90° and nice without the sun beating down on us. Big sister has been having swimming lessons, so she put on her inflatable ring/tube and hopped right in.

James was not so sure. He wanted his legs in the water and he wanted to keep his shirt on. After a bit, I coaxed him into going shirtless (this is tough for James). We went slowly down the steps, with James grabbing me as much as I was holding him. He got to watch the kids playing and his sister having fun. The gym is right by the airport, so he got to see a low-flying plane coming in for a landing -- he lit up as he waved to it and yelled "Hi, plane"

After a while, I started getting him a little more wet. James got nervous, and started to talk in babble-speak -- but he liked it too. Then I started singing and moving him. His sister's teacher from last year taught us to slowly tip them side to side, singing "Tick-tock, tick-tock, I'm a little cuckoo clock," so I did that too. He loved that. He even tried leaning over further to drink the water.

We went all around the pool. After about 45 minutes, I got James to float on his tummy, with me just holding him under his arms, and kick with his feet -- yay!!! He even let me float him on his back for a little bit. We all had to leave when they closed the pool.

We all really enjoyed doing this, especially at the end of a long, hot day! It was so hot getting back into the car (in the 80° range) that we stopped off for ice cream on the way home. We were going to get snow cones, but the gym's snack bar had closed.

I am so proud of how much more comfortable James is in the water. I never thought he'd let me float him and start kicking his legs on his own. This is partly because he's been uneasy even in the tub -- he has trouble balancing in the water and doesn't like it splashing on his face. The other part is that I know James has trouble "knowing" where his body is in space, and floating in water would seem to make that worse. Activities that involve the vestibular areas of his brain have been a real challenge for him.

I guess you can never underestimate the power of doing something for fun, and being surrounded by other kids doing the same thing and enjoying themselves.