Apraxia

A Tale of Two Speeches

by Tim on August 9, 2010

One of the inevitable things you do when you have another child after one who’s diagnosed as autistic is frequently compare the development of the two. You try not to – or at least not overdo it – because you want each of them to be their own person. I think we do a decent enough job in our house of letting the J-Man and Dale Jr. be on their own timetable for things and not see one as developing ‘better’ than the other.

One of the areas the J-Man has struggled the most with is communication in pretty much every form. While we’ve gained solid ground in areas like picture communication, verbal communication is ground gained inch by inch. We have no doubt that an endless reservoir of insights, wisdom, and thoughts live within him just looking for a way to be expressed. You can even see it when he says, “I want” and then pauses, gets a very intense look on his face, and clearly tries to work out how to communicate what it is he wants. But he often doesn’t have a word for it yet, and to say that’s emotionally difficult on all of us is a huge understatement.

As we’ve said repeatedly in the past, we probably wouldn’t know ‘typical’ development if it jumped up and bit us. With Dale Jr., we’ve rarely worried about it. If there could be two more polar opposite children in a family, I haven’t met them yet. It’s really a brilliant gift to receive as parents because you know you get two wonderfully unique little people out of the deal. Much of the time we only wonder “do children normally do this at this age?” when Dale Jr. does something new that boggles our minds.

I guess it’s that we’re so used to having to really parse and analyze and guess about every verbal and non-verbal cue that when Dale Jr. just comes up to us and asks for something, it often startles us. I sometimes wonder if we’ve gotten so good at interpreting word approximations that so much of what he’s saying makes sense to us, but regardless, the way he uses language to ask for things and identify objects and people is really quite amazing for a child who just turned 15 months. He even uses the J-Man’s food picture board to ask for toast!

We learned way back when that the order in which the J-Man has developed individual sounds (phonemes) was largely ‘backwards’ from the textbook sequence kids on average go in. Normally ‘b’ and ‘m’ – and similar sounds – come early. It took a while for the J-Man to get ‘m’ and to this day he still doesn’t do ‘b’ or ‘p’ sounds. He does this guttural sound for those instead, which we know is his way of doing a ‘b’ or a ‘p’.

For example, if we’re in the living room and he says, “I want” followed by two of these guttural sounds together we know he means “I want pillows.” (i.e., “I want you to lie down next to me on the pillows because I need to regroup.”) What fascinated a lot of people is that his first consistent sound was ‘k’, which is one of the late ones on the development chart. For a while well into his third year, everything on earth was ‘kuh-kuh’.

Dale Jr. picked up ‘b’, ‘p’, ‘m’ and a host of others very quickly starting several months ago. We did get to wondering whether he is following the ‘normal’ pattern and order of speech and phoneme development that the J-Man has largely done in reverse, with the J-Man moving from very advanced sounds back toward the basics.

Just for giggles, I did a little digging around for benchmark kinds of resources for what sounds theoretically could show up and when. If you want something that reads like a specifications manual for your child, skim through “Neurological and developmental foundations of speech acquisition” by Sharynne McLeod, PhD and Ken Bleile, PhD. The information geek in me was appropriately geeked out by this, though a big part of me was like, “Just let him be a kid, sheesh,” but I wasn’t the intended audience I’m sure.

Found another, much simpler, resource from the National Institute on Deafness and Other Communication Disorders. You’ll see “How do I know if my child is reaching the milestones?” and a set of interactive checklists to choose from below that. Click any of them and a new window/tab will appear that asks you some simple questions to give you an idea of whether your child is struggling in particular areas. If you have any concerns about your child’s speech and communication, this looks like a good place to start.

One last site I found was speech-language-therapy dot com, and it’s one you can really browse through for a long time and find a variety of good stuff to read. Some highlights include a semi-technical “Typical Speech Development”, the “Freebies” resource section, and some free “Phonology & Articulation Resources” that offer some worksheets and exercises that might work for your child depending on where they are on their verbal communication.

Back to our kids, another difference between them is the ‘syllable back-and-forth’ method – still haven’t come up with a good term for it – we’ve used for a long time with the J-Man to get up to our own version of full sentences. The following is a typical sentence exchange. Note that all the sounds come in pairs. The first in the pair is him talking; the second is Mary or me.

“I / I / wuuuuah / want / nuh / nuh / geh / gets.” (Translation: “I want [chicken] nuggets.”) Discovering that this worked was a revelation a couple of years ago. We worked up to a couple handfuls of basic sentences doing it this way, though all pretty much begin with “I want” or “I need”, but hey, that covers a lot of ground. We keep hoping to find any other parents who’ve experienced this with their child.

Dale Jr. has in recent weeks started to take the next step and put different syllables together without having to go back and forth like this. (note that ‘mama’ doesn’t count because it’s the same syllable twice) The most impressive one of recent days is ‘apple’, which he says plain as day (‘aaah-pulll’!) when looking at a bowl of applesauce that he wants. He’s developed a great repertoire of very useful words for things he wants or just wants to identify around the house. In the last couple of days, he’s made clear requests for ‘TV’, which as they say may be the beginning of the end. :-) It is amusing also that he’s picked up a few of the J-Man’s speech cadences.

I want to make sure I make something clear here, and if you take nothing else away from this post at least remember this: Verbal communication or the lack of it is not an indicator of whether someone is more or less intelligent than someone else. Do not assume that because a child or an adult cannot talk or talk much that they are not intelligent. If autism had commandments, this should be one of them.

What’s been really awesome lately are the times where Dale Jr. tries to engage the J-Man in play and they start interacting. They love playing chase together, even if that usually means Dale Jr. coming at him full gas and the J-Man running for his life, though they’re both laughing hysterically the whole time. As much as Dale Jr. is soaking up words from us and the J-Man too, it seems to us that the J-Man is starting to pick up some things from Dale Jr. I don’t get a sense that he sees it as a competition of ability. The J-Man’s sibling competitiveness is much more about not wanting to share Mama and Daddy, but that’s a post for another day.

For the most part, our two kids really do bring out great things in each other. We hope it turns into continued speech improvement for both of them. But most of all, we just hope Mary and I and the boys all realize what a gift they are to each other and to us. And we’ll keep working on the rest.

{ 3 comments }

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…]

{ 2 comments }

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.

[click to continue…]

{ 4 comments }

We love Rachel too!

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.

{ 3 comments }

The 439 Stages of Grief

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.

[click to continue…]

{ 7 comments }

Many Ways to Say ‘I Love You’

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.

[click to continue…]

{ 4 comments }

One Syllable At a Time

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 [...]

Read the full article →

“What if he never talks?”

December 5, 2008

[Note from me: I'm slowly writing a collection of essays and reflections that I hope to someday compile into a book. Over the last however long it's been, I've posted on this blog a few drafts of pieces I'm considering including in the book without actually calling any attention to them, but this time I [...]

Read the full article →