Our adventures into AUTISM (and little kids again)

Here’s the quick(?) background:

We have in our care our great nephew J and his little sister A, and he has been diagnosed with Autism since 20 months of age. He came to us when he was 3 3/4 years old (A was only 5 weeks old) for the Summer of 2006. The goal was to help out his parents get back on their feet and get stable again.

Sadly, J had not made much progress between age 20 months and 45 months (3 3/4 years old) … he was still largely non-verbal, poor gross motor skills, very poor fine motor skills, not potty trained, etc. A was born slightly premature, and spent a few days in the ICU and was on oxygen for a few weeks after coming home, and was under 8 pounds when we picked her up.

We hit the ground running as best we could (we called everyone we knew who might be able to give us some insight on dealing with Autism during our 10 hour drive to and from New Mexico … I’m sure T-Mobile was upset we were getting lots of free weekend minutes!). We networked out with the local groups … more on all of that in later posts, I hope. Basically, we did everything we could in short order.

Within 6 weeks, we had him potty trained, starting to use more words than jargon (although not all that intentionally), and we started to take advantage of his echolalia to teach him words and enunciation. Also, he exhibits traits of Gestalt learning (repeating phrases verbatim, but not understanding they are composed of individual words). So, rather than just teach him “yes” and “no”, we taught him “yes, please” and “no, thank you”. To him, it was still just yes and no, but to others interacting with him, he appeared to be more polite. You would be surprised how much extra help and attention that has earned him. Also, another big plus for him is that he is extremely social and will reference (i.e. look in your eyes and acknowledge) you.

We also nearly doubled A’s weight in the first two weeks. Not surprisingly, she became much more lively and vocal (and nowdays, she’s quite loud and extremely active!).

At the end of August, right near J’s birthday, we had his annual developmental evaluation done by Developmental FX (a great team over there), and much of what we learned from them helped everything suddenly make sense. J is bigger than his chronological age … he’s always been about 1 year bigger (not fat or “big boned”, but actually 1 size bigger), so it was hard to see through that and recognize his behavior for his mental age — which they diagnosed at 20-29 months (for the various disciplines, speech, gross and fine motor skills, etc). Suddenly, it made sense! He was throwing 2 year old temper tantrums and performing actions at a 2 year old level.

Now that the lights were on for us, we were able to re-calibrate our efforts and stop trying to teach him anything we could, but actually tailor our our efforts to bringing him up from that targeted age range.

In order to make ourselves more effective, we enrolled ourselves in a Hanen “More Than Words” class put on by a local Speech-Language Pathologist (SLP), Sheila Goetz. It was excellent (more on the class in another post, too). We were able to clearly see the techniques that we were already trying to use, but learned out to fine tune and focus them, as well as a bunch of new ideas — it really made a positive effect on our ability to help J learn to communicate!

We worked very hard and were able to make pretty significant progress by the end of the summer, the parents agreed with the extended family that it would be best to relocate up here to Colorado and take advantage of the environment and networking we’d established for the kids. They moved up in September and October of 2006 with the intent of getting settled quickly and transitioning the kids back ASAP.

At this point, it was Fall 2006, and the parents still weren’t quite ready to receive the kids back yet. We remained the primary caregivers and now we are 19 months later and we think it is time that we try to transition the kids back. We certainly wouldn’t mind if they stayed forever, but they do have parents who love them and we have all been working toward this goal of reunification for quite some time.

We have made tremendous progress with J and his skills … we recently had his annual developmental evaluation done (by Development FX, of course!) and are waiting for their report. We have been keeping a close eye on A and have had her evaluated at 3 months, 6 months, and then have completed the parental self-evaluations for her every 2 months or so until her recent 18 month evaluation (which J’s doctor said she looked like she was good or ahead of her development). She is still not out of the woods yet, as it seems to be a more frequent occurrence that kids hit 18-24 months and suddenly have the onset of Autism.

Otherwise, she has had the benefit(?) of all of our training, research, and working sessions with J … much of our work has bled over to her, or we naturally use the techniques on her. At 19 months of age (almost), she has over 150 words in her vocabulary, she communications intentionally, and has excellent cognitive skills (can follow 2-part directions, figure out the better route around objects or obstructions to get to her target). She is also very social and caring, and does pretend-play very well. She would be potty trained by now, but we’ve had some setbacks related to some transitioning with the parents (not sure why, but that seems to be the trigger to regress).

They are both *so* smart and beautiful kids, and we can only hope that we’ve been able to help them build a solid base that they can continue to grow on.

Over time, I hope to post more of our adventures, people met, lessons learned, in hopes that it may help someone else who finds themselves dealing with the mystery that is Autism.

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