Tuesday, January 03, 2006

Navigation in the New Year

I've been on a bit of a hiatus over the past couple of weeks, dealing with all the fun stuff that comes with the season. It was by turns busy, relaxing, trying and rewarding.

With no school for Oliver and no work for me, Team Oliver switched into high gear and we began implementing phase III of PECs. This phase requires Oliver to discriminate between pictures of items in order to make a request. Previously he had one picture available and that was for the desired object. Now he must choose between multiple pictures and only gets the object if he uses the correct image. Much to the surprise of our lead therapist, who had warned me that Oliver might have a hard time with the change, he picked it up almost immediately. Watching him figure it out -- and figure it out quickly -- was such a boost. I had braced myself for lots of crying and tantrums but his complaints were relatively mild and I think mostly to let us know that, boo-hoo, we were intruding on his neatly organized life.

In addition to Phase III, we spent a great deal of time on potty-training which has been met with mostly success, we completed the Assessment ofBasic Language and Learning Skills that will help us develop priorties for the ABA portion of his therapy, and in general spent a lot of time reinforceing the things that Oliver does well. I saw a boost in his use of language -- much of it echolalic or scripted but speech nonetheless -- and he seemed generally well-focused and happy. One of the biggest changes that I've noted over the last month is that he has become very, very affectionate, demanding hugs, kisses and cuddles from everyone -- even people he doesn't know all that well. He has always been a cuddly guy but even his therapists agree that it has stepped up a notch.

On New Year's Eve we spent a few hours at the home of a neighbor where some families from our street had gathered for a meal. I had been apprehensive about it because Oliver typically doesn't do very well when there is a lot of commotion but there were no tantrums and he only started trying to escape to remote areas of the house after about 90 minutes, which was then our cue to head home. I couldn't believe how well he managed despite all the noise and commotion.

Present at the gathering was another child who is only two weeks older than Oliver. The differences between them are dramatic and I tried hard not to compare. When I allow myself to make comparisons, even for a minute, I still feel the tide of grief lapping at my ankles. There are days when I can quite clearly see where the road ahead of me becomes paved with acceptance. There are fewer and fewer days when I feel overwhelmed by the all-encompassing "autism". It is simply our new normal.

I have such great expectations for 2006. It will be a year full of new challenges and I feel ready to embrace them. I still have the feeling of being slightly adrift, without roadmap or chart, but I have also learned that I must take Oliver's hand and let him be the guide.

To those of you who have come along for the ride, who have given me support, advice, wisdom and hope over the past few months: thank you. And may the winds of 2006 show you favor.

4 comments:

  1. "the tide of grief lapping at my ankles": I think some of that feeling never quite goes away. On the other hand, when Charlie makes progress--like Oliver moving on with PECS and doing so great at your neighbor's house--I think my joy is greater than the ocean.

    Are you going to start verbal behavior too in your home program---great! There are debates among VB professionals and parents about using sign language "vs." PECS--worries about confusing a child--but, as Oliver showed with his moving into PECS Phase III, our kids can handle more than people might rush to think. For Charlie, we did anything do promote his language. We started with sign language and have used PECS on and off: Both the visual aids and pairing a sound with a physical movement helped his developing speech.

    Happy New Year!

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  2. Yes- very well said. Just today, I was thinking about our recent trip to a basketball game, and trying to imagine how Henry would have acted if he were not autistic- if he were a typical child. Would he have run around and hung out with the older boys, talking and acting silly? But my imagination couldn't get very far-- I just can't imagine that. It's not Henry. He is what he is. And I love the little person that he is. That was sort of an epiphany for me- I realized that I am moving along on that "road paved with acceptance".

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  3. Dear Oliver,

    Most excellent hon!!!!!

    Dear Mom,

    I am glad you are able to avoid the trap of comparisions. Katie, who is mom to Noah, has a tendency to do that with her older son Cole and my granddaughter Meg. They are six weeks apart in age, but she is always saying things like Meg is smarter. She doesn't realize that Meg is book smart and Cole is just plain intelligent. Meg can read at a 4th grade level at seven, but doesn't know enough to come in out of the rain. I hate having to point this out to her all the time, so I am glad to see that someone is wise enough not to fall into that trap, when people do it with so-called "normal" children too. Sometimes I think she focuses too much on Cole because it is easier than focusing on Noah's problems and needs.

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  4. what a lovely blog you have...it sounds like oliver is doing some wonderful things. i look forward to joining along the ride in 2006!

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