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 Mary on January 18, 2009
Saturday afternoon (frigid weather!) we’re watching Signing Time. Rachel comes on to sing the introduction song. J-man touches the TV screen: “Ahh elll uhvvv yu uuu, Err Aa K-Kul!” (To the uninitiated, that’s “I love you, Rachel!”)
No prompting, no saying every syllable behind him, just straight out.
Also, when Rachel sings a song, J-man will now pull on my arm, and say “yu uuu!” until I sing AND SIGN along. My signing is getting better because I’m doing it more. I sign the word, he says the word, and everything is right with the world.
Now that we have new ones to watch, I’ll have more signs to learn… and the J-man has more words to learn. Both of us are growing.
by Tim on January 6, 2009
[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]
The 439 Stages of Grief
Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.
Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.
They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.
They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.
We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.
Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.
But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.
This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.
And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.
Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.
And this is the way it begins for all of us, with one, single, determined step.
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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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