August 2010

Visual Math?

by Tim on August 30, 2010

This one boggled my mind. I’ve always said that one of the most important skills a parent of an autistic child can have is that of pattern recognition. There is usually a reason why your child does something, and I’m becoming more and more convinced that if you study the pattern of what’s going on with and around your child and what they do or create within that, you may begin to figure out the why behind what he or she does. I have slowly developed this skill at least to some degree either through experience, knack, or outright necessity. I was really glad for it today.

Not surprisingly, it’s hard to evaluate the math skills of a non or minimally-verbal autistic child. That difficulty may easily span much further along the spectrum, but I can only speak from our own personal experience. It didn’t dawn on me until the J-Man built the following – and I figured out at least part of what he was doing – that he might be more able to express the math skills he does have visually. I think he gave us his first big clue today that this is indeed a real possibility.

The J-Man constructed the following two towers out of Duplos. He actually built two more along these lines, but I didn’t get pictures of them. See if you see what the relationships are. (Answers included at the end.)

j-visual-math-99.jpg

[Hint – We actually found two ‘answers’ to this first one.]

j-visual-math-14-7.jpg

[Hint – I think there’s only one for this one.]

OK. Figured them out yet? Scroll down for what I saw at least. If you see something I didn’t, please post in the comments! And while you’re at it, how do we expand on this discovery?

 

 

 

 

 

 

 

 

Tower 1: It’s 9 blocks tall to the top of the shorter side and 9 more blocks up from there to the top of the long side. Also, the color pattern of the first 9 blocks repeats with the last 9. That’s some serious patterning.

Tower 2: The shorter side is 14 blocks tall and then it is 7 more blocks up to the top of the longer side. Nice way of showing how to double a number, show 2/3 and 1/3, or just generally show an appreciation for something like the Rule of Thirds for Lego building. The color pattern this time doesn’t repeat obviously (dawned on me just now that he didn’t have the necessary color blocks to do that if he wanted to). However, it’s possible there is a color pattern to this that I didn’t figure out. That’s happened before.

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One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

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Shut Up

by Mary on August 23, 2010

Last week we had a parents’ night at school, and discussed communication. The topic was so popular that they were a little overwhelmed in the childcare area, so I ended up leaving about halfway through and helping out. (I carried around the 2 youngest kids and sang to them. My arms still hurt 3 days later.)

We talked about picture boards, and choice boards, and expecting MORE from our kids in terms of communication… but maybe sometimes LESS in terms of spoken words. One of the things the teachers kept stressing was that parents need to remember to stop themselves from overwhelming the kids… with words. They really pushed using pictures to illustrate what the kid needed to say, instead of constantly repeating ourselves. For example, we should say “would you like some apple?” – and then if there is no response, pick up the picture card, and point to the applesauce – and be quiet. Just point.

This one is a hard one for Tim and me. I have to keep reminding myself to shut up, and give the J-man time to process and respond. And keep reminding myself. And keep reminding myself.

The teachers also suggested making the J-man interact with us more – by only giving him a little of what he wants, or only part of what he needs. For example, I know that every morning, the J-man comes downstairs and has applesauce, nuggets, and tea for breakfast. For the longest time, we just went ahead and had everything ready to save time. Now though, he has to ask for each of those things. We also have started giving him half a container of Veggie Straws, when he normally gets an entire container of them for a snack. If he wants more, he has to ask for them! (While I was typing, he asked for crackers… I gave him 3, when I’ve seen the boy eat an entire sleeve! So I’m waiting to get interrupted again.) They suggested when he asks to color, to give him the paper, but then wait for him to ask for the crayons, or even make him ask for specific colors.

One last thing we talked about recently was trying to move the J-man toward forming some letters correctly with his mouth – instead of B and P, he makes this “glottal stop” sound with his lips open. We are waiting (and waiting and waiting) for him to close his lips while making that sound, and only THEN does he get to watch Pinky Dinky Doo, or “do pillows” where we squash him on the floor with pillows for deep pressure. The past couple of times, I’ve just needed to tap my lips and say “lips” and he closes his. The sound is still the same at this point, but the lip position is at least beginning to change.

It’s so slow sometimes that I want to scream. And then, like the “P” lips closed position thing, it’s quick.

One more thing that has nothing to do with communication, but is just too awesome to not mention: I steamed some carrots for Dale Jr, but then couldn’t get him to eat them in pieces, so I ended up pureeing them. I added them to applesauce, and he ate them just fine. Hmmm… how would the J-man react? I am proud to say that he now eats applesauce with pureed carrots (OR pureed butternut squash) AND a dollop of plain yogurt mixed in. I think he may even like it better than the plain applesauce. That makes… NINE FOODS!

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What do parents of autistic kids want?

by Tim on August 17, 2010

We want to know that somehow, some way we are strong enough.

We want to see what we are working toward and have the perspective and wisdom needed to get there.

We want quality, clear, and accurate information because we have so little time and energy to think.

We want to know that we’re part of a really great story.

We want to figure out what our kids are thinking about in the worst way.

We want to have some better clue about how our kids see and experience the world.

We want to know we aren’t crazy, and we want other parents to tell us that.

We want to know that others are going through this daily chaos, too.

We want friends who can keep faith in the good and the awesome on the days we can’t.

We want sometimes for people to just shut up and listen to us talk things out.

We want to know that we aren’t alone.

We want the world to accept our children as they are.

We want to be accepted.

We want to go and do things like other families do.

We want to be able to go out in public or on vacations and not spend hours or weeks preparing.

We want people to stop judging us and our kids in public.

We want to feel comfortable in our own skin.

We want to be able to let our guard down for a few minutes and just relax.

We want quiet times where calm reigns in the house and content kids are curled up next to us.

We want to be able to savor every good moment with our kids.

We want allies.

We want acts of simple kindness.

We want more services and less paperwork.

We want the end of years-long wait lists.

We want to know that whatever threatens our children will not overwhelm them.

We want our kids to be safe.

We want to know that we are able to protect them.

We want to be sure that our children will be provided and cared for even after we are gone.

We want a way to keep our children from being bullied, taunted, or made fun of.

We want desperation to be rare and fist-pumping awesomeness to be commonplace.

We want there to be enough money.

We want people not to fight ‘autism’ but to fight against prejudice and injustice.

We want people to seek opportunities to help every child succeed, because we know they can.

We want what any parent wants — the chance for our children to fully live out their potential and their dreams.

We want to kick butt and not just get by.

We want people to know that our lives are challenging, not tragic.

We want everyone to know that our children are wonderful, beautiful, and perfect just as they are.

We want everyone to know that we will fight for our children until our last breath and beyond.

We want the world to know that we wouldn’t trade places with anyone.

What do you want?

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And sometimes it just goes all to crap…

by Tim on August 10, 2010

“I’d piss on a spark plug if I thought it’d do any good!” – General Berringer, “War Games”

Well, as they say, “$h!t happens.” And so it did.

Our most recent in the Developmental Achievements We Could Do Without series was the J-Man’s newly-discovered ability to climb out of his crib. We’ve dreaded this to be honest as one of those points of no return that would mean we’d have to nuke the existing sleep routine we spent months and years building and basically start over. Within the last few days, we did discover that he’s figured out how to climb back in his bed, which is certainly a plus except that he actually has to want to.

Through our own flavor of Spy vs. Spy, we got him to at least stay in his crib by employing technology he doesn’t yet understand in some warped assertion of power by us the alpha parents. Believe it or not, that much is still kinda working. He has been staying in bed recently until he falls asleep.

However, here’s where it hits the fan, or lands under the fan as the case may be.

When last we talked about this tale many months ago, the J-Man was stripping down while still in his bed, which led to all sorts of fun and funky stuff to deal with in the mornings. For months we’ve been winning the battle thanks to our at one time desperate but in hindsight rather genius idea of putting some sort of shirt over his sleeper to stop him from getting out. Even the Great Flexi-Houdini J-Man wasn’t able to figure out how to get out of it. But as often happens, at some point a wasn’t can easily turn into an is.

It was a good run, but it appears that all good things must come to an end. And some of those must fail in a big pile of excrement, particularly one that results from an almost-five-year-old getting nekkid before it’s time to.

And this is often how changes announce themselves in life. Sometimes you get a religious epiphany, a double rainbow, perhaps the Voice from God, and maybe you simply hear that still small voice. And then there are the times you get a bunch of turds in the floor. However it happens, it’s pretty clear that when any of this happens, a wind of change is coming.

I really don’t know how to deal with this except to say “it happens” and try to come up with something before we run out of sheets, his pajamas, laundry soap, Clorox wipes, latex gloves, and bleach. It’s not like we’re flush with cash, the patience to work it out, or the time to sit and ponder it forever. We just weren’t quite prepared to deal with this latest assault.

This really wasn’t the week to have another load of stuff dumped on us. Yeah, none of us really have time for this crap, but what do you do? It’s not like he’s trying to be a butt about it. “All behavior is communication” is a fundamental principle for autism, so we just have to get to the bottom of it. We’ve just run out of ideas in our arsenal.

Maybe we’ll come up with another desperate but astute idea to wipe out this problem, but it always feels like we’re behind wherever he is. Perhaps if we could just crack the code of potty training, this much of it would come to an end. What a relief that would be! I know we have a good track record of ascertaining the solutions eventually, but at the moment, that’s not very assuring. Just feeling kind of bummed about it all. Well, this too shall pass, I suppose.

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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.

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Autism Meets the Dentist – To Restrain or Not Restrain

August 5, 2010

Monday was our semi-annual trip to the dentist. I doubt I need to go into much detail as if there’s one universal dread we share as parents – and a mortal fear that most of our children experience a thousand-fold worse – it’s the dentist. No offense to the dentists in the world, but with […]

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