by Tim on August 27, 2009
After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.
I’m not saying last year’s team – compiled by the county school system with no one on the team from the J-man’s current school – weren’t good people. Far from it. Some we liked quite well, but with a couple of people, we did have some adversarial relationships, and it was clear that it wasn’t exactly a cohesive unit of people used to working together. We got off on the wrong foot with our case manager – and never really got back on the right one – and we so totally distrusted the process at one point that we never really quite got over it.
The end result last year was that we completed the process knowing that without all the work we put into it and without all the pushing and standing firm we did, we very likely wouldn’t have gotten what was appropriate for where the J-man was then.
What we didn’t know back then was that we had gotten the IEP Powerball as an added bonus, almost by sheer luck (albeit with a system we admittedly gamed a bit). We got a school and a set of teachers and therapists beyond our wildest dreams.
To say this has been an amazing first year of preschool for the J-man would be a serious understatement. He continues to grow and thrive and learn and do things that astound us. He has worked so hard, and he has had the best teaching and support we could have ever dreamed of.
Around the table the other evening for IEP 2009 were Mary and I, his lead teacher, the teaching assistant, his speech therapist, his occupational therapist, and the school principal. We talked about the J-man’s many great accomplishments and the areas that still remain a challenge for him. In my mind, we were remembering and celebrating the great year he had and diving in with hope and enthusiasm to plan for the future.
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Slight change of plans this week as we went to meet the J-Man and Mary’s family at the beach a day earlier than planned. We stayed a couple of days and then came back home – and we let the J-Man stay there for the rest of the week. He was having so much fun at the beach that we couldn’t make him leave yet. That was more important than our uneasy second thoughts, which of course are more about us than him.
He comes home tomorrow, and it has felt like missing part of my arm for most of the week. It has been good for us to have a little vacation (or stay-cation where we really played catch up on work and the house for most of the week), but God do I miss him.
It was something to see him lead everybody he could to the back door of the apartment where we were staying in hopes of finding anyone who would take him down to the beach – regardless of the time of day or night. It was really sweet when we got there that he led me down to the beach, just the two of us, like he wanted to show me this amazing thing he’d discovered. I swear it even sounded like he was singing to himself while we were walking down the beach access ramp.
We watched him walk up and down the beach with Mary’s mom, stick his legs a little bit in the surf, and get some sand on himself. They drew literal lines in the sand to visually show him where he couldn’t go past on the beach, and for the most part, he followed those boundaries. (Good thinking on their part – visual cues!) Admittedly he was very little the last time we went to the ocean, but he was so much different this time. Clearly he loves the beach and the water. It was like watching a different kid.
There was only one problem. Most of this happened while I wasn’t around. Whenever he saw me, he ran up to me, held his arms up insistently and sometimes a bit frantically, and wanted me to hold him, to the point of just about having to carry him everywhere. Yeah, I’m a softy toward him a lot of times, but there was something else going on here that I’ve yet to figure out.
I’m a believer that in kids who are minimally or non-verbal, behavior itself is communication, and one of the most essential forms of it they have to draw on. He was trying to tell me something, seemingly very important, and I wasn’t (and still am not) sure what it was. Every time I was in the room, he was like this.
Was it his reaction to being apart from us? Perhaps. Was it more than that? Maybe, and I think likely. Was he in some sort of distress? I don’t think so since he was otherwise having a very good time. This has been really bothering me this week. What all is he trying to communicate to me? And why me specifically?
We wanted to take him to the North Carolina Aquarium while we were there, which is about 5 minutes from where we were staying. I thought he might enjoy the fish and the ocean colors and all the water, but all he wanted to do was cling to my neck. If I tried to put him down, he either did these odd movements around me and refused to hold my hand or just turned around and tried to climb back up me. I’m not even sure he registered any of the fish and ocean exhibits. I felt really depressed by the whole adventure, of course because I wanted it to go a certain way and it didn’t (again, my emotional baggage and not his). I felt like the guy who’s clueless and doesn’t get the obvious message blaring right in front of him.
We also tried going out to eat with the family, and he refused to be anywhere other than on my lap. He was pretty miserable the whole time. He had gotten up really early that morning and was very tired, but it was still uncharacteristic of him.
I know he missed (and still misses) us, and we certainly miss him. I just feel like there was something more going on. Around others, he’d do his thing on the beach, walk up and down it and play some in the water, play out in the backyard of the place we stayed, let others read him stories, and generally be himself in the ways I’m used to seeing him when he’s in one of his more calm and sensory-balanced states. As soon as I came into view, though, everything about him would change.
If all behavior is communication, what’s he really trying to tell me? I’ve been carrying this question around all week, and I don’t feel any closer to an answer.
by Tim on February 22, 2009
This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.
Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.
Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.
If you haven’t already, go back and read Part 1. If you have, let’s continue on!
Characteristics That Are Significantly Present (continued)
Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.
School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.
He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.
That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.
Continue on with Part 3! [click to continue…]
by Tim on February 20, 2009
Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.
In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.
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by Tim on January 3, 2009
As I described yesterday in the “One Syllable At a Time” post, we’re getting some great mileage out of breaking everything down into these syllable-by-syllable exchanges, going as far as dividing one syllable sounds into even smaller parts as needed.
So, much to our eternal and unending delight, the J-Man has two wonderful sentences he likes to say, provided you do the syllable exchange with him.
We have an “I Want” picture board where he can grab a food picture and stick it at the end of the “I Want ____” part (thanks to the velcro). Then we do:
J: “I”
Us: “I….”
J: “wuhhh-uh”
Us: “want….”
And then he tries to say whatever food it is he picked. It’s getting more common for him to put it together without us and say “I wuhhh-uh” before we have to chime in. Yay! When you think about it, you’ll realize what a fundamental part of our development it is to be able to ask for what we want.
But, of course, our favorite is this (said in a rather dramatic volume):
J: “I”
Me: “I”
J: “luhhhh”
Me: “luhhhh…”
J: “vvvvuuuuuhhhhh”
Me: “love….”
J: “yeeeehhh”
Me: “yeee….”
J: “eeee-oooo”
Me: “you!”
J: “Dah-deh”
Me: “Daddy!”
J: “ah”
Me: “and…”
J: “Ma-ma!”
Me: “Mama!”
Believe me, I’m choking back tears just writing this.
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by Tim on January 2, 2009
Since we’re still in a post-holiday funk around here and about as lively as the furniture, I’m doing a little content recycling today from a recent comment I made to at least get back to posting. I think all the endless eating and football-watching has killed off a bunch of my brain cells!
Over the last few days, we’ve learned some interesting insights into how to get the J-Man to use some more speech. He is more and more able to give us some idea of how much he understands us and is trying to communicate back to us using a combination of word and syllable approximations as part of what I’m calling ’syllable-by-syllable communication’.
‘Syllable-by-syllable communication’ (my made-up term) has turned into a real winner around here once we pushed him toward it. With this, he communicates one syllable of a word using his best approximation, then we repeat it back to him indicating that we heard and understood him, then he continues with his best approximation of the next syllable, and so on. Following this approach, we’ve gotten through entire sentences, stories, etc. But most of all, we’ve been able to differentiate many words for the first time.
For example, any word that started with ‘m’ used to be ‘muh-muh’ or ‘mo-mo’ or something like that, and he wouldn’t go any further, or we didn’t push him enough to fill in more of the syllables. Now, for example, ‘monkey’ goes like this:
[Note - he tends to get a smidge echolalic with syllables.]
J – “Muh-muh”
Me – “Mon”
J – “kee-kuh”
Me – “key!”
And ‘many’ might go like (with J-Man and I alternating): “Meh-muh”; “Meh”; “Nee-nee”; “Nee!”
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