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    March 2012
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  • The “Class”

    Avery, Naim, Aaron

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XPost: Avery Progress

So, last I think I did a major Avery post was here, when I went off the deep end of despair diagnosing him as having autism. So much has happened since then. Looking back, I do understand where I was coming from and why I was so concerned. But thankfully, with a lot of trial and error and work, I no longer think it is likely that he has autism. Language delay? Yes. Quirkiness? Definitely. Autism? If he does at all, it is more on the higher end of the spectrum.

At the time, some 9 months ago. Avery was 18 months old and was really still acting like a 9 month old. Well, he wasn’t really acting like anything at all. He was a baby dud. He whined continuously. He always seemed dazed and unaware of his surroundings. He didn’t seem to understand anything you said. He did not say a single word or use a single gesture. When he played, he went off by himself and would do the same thing over and over again. He was obsessed with steering wheels and circles and would steer a toy steering wheel non-stop for hours if you let him. He would pace, back and forth between two places continuously until you made him stop.  He rarely would come to you to initiate play, and often ignored you when you tried to play with him. He did not voluntarily give or receive hugs and affection. He was a whiney bore. He was a dud.

Thank God this kid likes to eat. Food has been a major language motivator.

We have come a LONG WAY since then. Here is what we have done:

  • First, Nik was speaking to him in Swedish in an attempt to make him bi-lingual. He was spoken to in Swedish and English for his entire first year. Although I think this is fine and helpful for most kids, in Avery’s case, we stopped with Swedish altogether and I started signing to him as well as using English.
  • I started reading up on Autism, which made me nuts because there was so much WOO out there about it and some autism people are CRAZEE. But one thing that was consistently mentioned as something that MIGHT help kids with autism symptoms was dietary changes like removing dairy and gluten. I decided to try to remove diary first (as per book recommendation as it is the most common food irritant). This discovery that he is lactose intolerant, (which we did by doing basically test-retest validity and reliability studies because I am a research/data geek) is the MOST fundamental thing that has affected his change in behavior. After dairy, I did try removing gluten, but that did not seem to have an affect, and also experimented with peanuts, etc. But it was removing dairy that changed things in the most dramatic way. Again. I don’t think removing dairy or gluten cures autism…I think a lot of kids are misdiagnosed as having autism when they really have dietary challenges. Since it doesn’t HURT to experiment with dietary changes and it is relatively easy, I don’t understand why doctors are so resistant to suggesting this. Especially when, as we know, most of the world is lactose intolerant. Most Europeans are not, however, there is a high incidence in Finland. Guess where my baby’s paternal gene pool derives from? Gotland, Sweden…an Island in the Baltic Sea right off Finland. So, it would have been nice to have a medical person tell me this instead of having to read 20 books on it myself.
  • Taking out dairy made my dud baby into a happy-go-lucky, if not still intense and stubborn baby. He laughed more, he made eye contact, he became more affectionate, he played more like a normal baby plays, he engaged with people more, he became inquisitive and curious about his world. Still, to this day, if he has a significant amount of dairy, he will whine around on the floor for the next three to four hours and be a dud. Then, after his GI system finishes its revolt, he becomes happy Avery again.
  • But still, by the point of the end of all that experimentation, Avery was maybe 20 months old and had missed out on 20 months of learning because he was basically sick all the time. We had a lot to make up for, and the behavior problems of a kid whose motor skills are so much higher than his language and cognitive skills were starting to set in. I put him in Early Intervention services, which, although they gave me a bunch of assessments and confirmed the issues, were fairly useless. Mostly because they only gave him 6 clock hours of services for the school year due to budget shortfalls. I also put him in Early Head Start. This was mostly so he could get one on one catch up time from other people than me.
  • Since he still didn’t understand us and had no understanding or interest in books and pictures, I started an object language system for him. This included an object schedule box, where each part of the routine of the day had an object to represent it. Breakfast was a spoon, playtime was a block, diaper changing was a diaper, etc. We also asked him questions and gave him choices using objects. Do you want a drink (cup) or a snack (small bowl). You have to understand that at this point, he would not even point or grab at anything, nor many times not even look at the thing he wanted. This was hard for Nik (and me, too) because we had to start with the most subtle visual cues that would indicate communication. Sometimes as parents, we missed these due to our own vision issues. This is mostly why we brought in EHS and the big kids helped as well.
  • I trained Nik a whole lot in how to work with him. I taught him signs, I taught him how to simplify his language to using one consistent word over and over again, to keep a regular schedule and routine so Avery could anticipate things, to look for body language and small head movements to get a response, to get right in his face to talk to him and not stand over him or talk from across the room. I put Nik in SPED boot camp. Nik was really his primary caregiver after I stopped breastfeeding, so it was important that we were doing things consistently and that he was doing the same quality of stuff that I was.
  • I put all of his toys up on a shelf and made him point to them. To get him to point to what he wanted was a major breakthrough, because it was the first sign of any expressive communication on his part. I would also put his snacks and drinks up on a shelf (but visible to him when I picked him up) and made him point to them to get them. This really pissed him off at first, but it worked and he eventually learned to point. That eventually turned in to his first expressive word “Here Go!” which meant both “here you go!” and “I want that.” (“here go!” Here is my hand, put that item in it already!)
  • Once we had that, we started using food as incentive. (Alfie Kohn would be so scandalized.) I would literally give him one grape at a time at lunch and make him ask for each one in some manner, either by pointing or signing or herego-ing.
  • It took us 8 months, but we did get him into private speech language therapy. Insurance didn’t want to pay for it because they thought EI should provide it. I had to basically state that EI was not meeting his needs, which made me really popular with EI. But I think they understood on a personal level, just made it difficult for them on a professional level.  With Speech therapy, we started doing all kinds of mouth things to get him to realize that mouths can talk as well as eat. We started shaping his babbles into words like Buh for bubbles, and Wuh for walk. We have had a bit of success with this.

At Head Start.

And that is where we are right now. Taking him off dairy changed his whole demeanor and got rid of some of the weird play patterns like pacing back and forth or being obsessed with steering wheels. We kind of had to teach him how to play. Aaron and Naim actually helped a lot with this by modeling and showing by example how to “cover a room” when going to a new play area and how to pretend play and things like that. Since he had no words or context for, say, dishes, he did not know how to play kitchen. A and N really would show him ways to play much better than we could.

He is starting to get interested in other kids. I mean, more than just thinking they are more toys for him to play with.

But the on-ramp learning curve of language has been slow and steady. He still has a ways to go here, but here is where we are now:

  • He understands A LOT. His receptive communication has improved from basically understanding nothing, to having a good understanding of many 2 year-old things. You can tell him now to throw something in the trash can. He understands when you say you are going to change diapers or have lunch. We really no longer have to use the object schedule calendar. He understands simple verbal sentences that are routine. He still cannot identify a picture and doesn’t really understand the concept of pictures, (although I think it is emerging, he is starting to get more interested in books.) This has been his biggest improvement.
  • He can sign “more” consistently. He also will sometimes sign “cracker” or will copy signs that you sign to him. He has also just started signing “go.” More is used mostly with food, and sometimes with something he wants like a toy, but working on transferring words to more contexts. Oh! and he can sign CAR, and WASH HANDS, which is the cutest thing evan!
  • Verbally, he says the following: HERE GO, BYE BYE, GO, NO (which is about three syllables long…no-OO-o),WA (for walk), BU (for bubbles), he calls me GIGA for my name, because Naim calls me my name instead of mom half the time. Avery, I think knows who mama is, but he doesn’t call me mama. He doesn’t call Nik or anyone else anything either. Calling me Giga is kind of a break through because it is the first time he has named a person. It is also kind of funny because a little kid I used to take care of years ago used to call me Giga, and I haven’t heard that for awhile. He will also say DAH for dog and this is usually what he calls Sully. He has also said CA for cat. On the spot, he will sometimes imitate a lot of words that you say right after you say them, but they don’t necessarily carry over yet to spontaneous communication.
  • He has started to help you get him dressed by say, holding up a foot when you ask him to for socks. He can point to his nose when you ask him to, but does not know other body parts yet.
  • You can actually start to have a bit of a “conversation” with him. The other day we were in the kid’s play room at school and I asked him if he wanted to take a walk. He nodded. I told him to put his toy vacuum cleaner away, and he immediately did. Then I told him we were going to get his coat, and he ran over to his coat. Then I asked him if he wanted to walk or ride the stroller, and he said “Wa.” This is something we could not do even two months ago.
  • Mostly he is just so much more aware of what is going on around him and aware of how language can give him control. For a long time, he was just such a chunk of baby that we just drug everywhere with us and tried to interact with but got nothing. He was dead weight (well, squirmy dead weight.) He is now an integral part of what is going on around him.

With Nik at big kids school. Having to take him to big kids school and having him be welcomed in classrooms even when he is so young has helped him. Yeah, for multi-age learning!

So, obviously, if you know two-year-olds and their hundreds of words vocabulary you can see that he still has a ways to go. But I think we are on the verge. The most important thing he gets now is that things have names and language has meaning and is useful. He did not understand that for a long time. Since Nik has been at work and I have been home with him day in and day out (and I don’t mean that in an annoyed I -CAN’T-TAKE-ONE-MORE-SECOND-OF-THIS-KID at ALL way. ahem…) he has seemed to be on a surge of language acquisition. I do not think that is because Nik was bad at working with him, though it was harder for him to do. (lest you think this is a blind thing, Nik was the primary parent of his daughter and she had no language delays. This is an AVERY thing.) I think it is just because I am the one who he communicates with the best and now I am spending inordinate amounts of time with him (and, you know, I’m AWESOME!)

My prediction is that he will continue to improve slowly or in spurts for the next few years, but by say, age five or six, he will have caught up and we will look back on this and say, “remember when we used to FREAK OUT because we thought Avery had autism? Now he talks NONSTOP!”

He is our funny little Avery and no matter how he would have developed, he would have been loved and been ok.  And who knows yet exactly how he actually will end up developing. But this improvement we are seeing now and the personality he is developing after the elimination of dairy is such a freakin’ relief. Slow and steady, slow and steady we go…

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