Saturday, January 30, 2010

#28 Eye Appointments

Two and a half years ago, we took Jack to the optometrist on our military base for his first eye exam. The doctor was able to get enough information to say that Jack's eyes were fine, but now we need to take him again, this time to a civilian provider. She's highly recommended by the schools and an acquaintance from church who is very calm and competent. I think Jack will be much more cooperative now, especially because he WANTS glasses, just like his friend at school. We went through this with our firstborn (who may now actually need glasses) two years ago when several of his friends got glasses.

Please share your experiences with optometry exams for kids on the spectrum. Eye exams are, of course, less invasive and have fewer weird sounds and smells and sensations than dental exams, but they're still definitely outside the routine.

Sunday, January 24, 2010

A Very Good Week

Good news is rolling in.

First, a few weeks ago, Jack's PT at Children's told me she thinks he'll be discontinued from physical therapy after his next evaluation, which will be in late February. She thinks he's closed the gap. Yippy!

Last Tuesday, Jack's SLP told me he is doing GREAT! He's still got a long way to go, but since we moved therapy to Tuesday from 5:00 on Friday evening, he's at least able to focus better.

Friday, Jack's TEACCH teacher sent a note home saying that Jack got ALL the first grade Dolch sight words right. The few he didn't know immediately, he sounded out until he got them. She was amazed and so am I!

Also on Friday, his private OT told me that she expects to reduce service to Jack, going from 30 minutes every week to 30 minutes every other week. He's made so much gap-closing progress since his last evaluation (which showed him as much as four years delayed in some areas of fine motor development) that weekly sessions are probably no longer indicated.

At home, we're seeing across-the-board improvements in speech, social skills, and sensory tolerance. He actually sat through Avatar yesterday! Well, he spent the final fight scene on the floor "taking a nap" with his eyes open, but still. This is huge improvement.

We're also seeing tons of stimming at the same time, which has been a pattern for him during periods of progress. Playing with cars and trains, making noises, and blurting out movie lines are all going strong, almost but not quite constant when he's not actively engaged.

But that's okay. I'll take what I'm getting and be hugely grateful for it!

Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!

Saturday, January 16, 2010

#27 Imagination

People on the autism spectrum often show little imagination. In children, this means little or no make-believe play. Jack's play was very repetitive, with little imagination evident, so we put his big brother, Nick, in charge of teaching Jack how to use his imagination.

Nick has enough imagination for ten children and accepted his responsibility readily. It worked. While Jack can still be frightfully literal ("NO! I am NOT a cuddle-bear. I'm a boy!"), he is showing much more imagination these days. He suddenly decided he likes Pokemon now, and he's using a bunch of random stuffed animals to represent his Pokemon characters. Only one is an actual Pokemon.

This morning, he wanted to watch Men in Black Two, and went looking for his MIB glasses, which he could not find. I refused to help him look, telling him it was his responsibility to keep track of his own toys.

Since he couldn't find the MIB glasses, he's wearing is glow-in-the-dark Harry Potter glasses. They don't at all resemble the dark shades with black plastic frames he calls his MIB glasses. The Harry glasses are whitish without lenses. But he's happily substituting anyway. This may not seem huge to most people, but it does demonstrate a level of creativity and imagination Jack didn't demonstrate a year ago.

I LOVE progress!

What do you do to stimulate imagination in your child?

Friday, January 8, 2010

#26 Developmental Patterns

I'm reading several books at once right now (things are getting back to normal around here!) and starting to search out some new autism blogs. A common theme I've stumbled upon is how shockingly uneven development in autistic children can be. In some areas, a child may do quite well, even precociously, and in other areas, the same child may exhibit little to no age-appropriate progress.

Books like What to Expect the First Year and What to Expect the Toddler Years are pretty useless for helping parents identify autism. Last time I checked (a few years ago before I threw my copies in the trash), the information on autism was largely incorrect or misleading, and definitely focused on extreme cases...which are not the majority of cases. Since these were my developmental bibles for my children, no wonder I didn't see the warning flags for what they were.

Most developmental books I've read stress that normal children have uneven development. A friend had her baby daughter the day after I had my firstborn (Nick), and her daughter showed precocious gross motor development, climbing stairs at six months, walking at 8 months. But her fine motor skills were poor in the first year. Nick, on the other hand, walked at 12 months, but could handle and manipulate very small objects with ease, even stacking blocks as high as he could reach when What to Expect said he should be stacking four blocks. Both children were developing normally.

So where is the line between normal uneven development resulting from natural variations in brain growth and abnormal uneven development resulting from a Pervasive Developmental Disorder?

As parents of autistic children, we often ask the question, "Where is the line....?" And damn it, there's no answer. Or at least no clear-cut answer.

I knew something was wrong after Jack had been in preschool for 8 months and still didn't act at all like his peers. Hints came sooner, but my ignorance was astonishing. I had read dozens of early development books (even the scary parts about autism and fragile X and cerebral palsy, because I'm thorough that way). Had I known then what I know now, he would have had evaluation at least 8 months sooner than he did. But I just did not know. The right information just wasn't available to me in the books I'd read.

Some parents beat themselves up for delaying, and I don't see the point in that. How could I have known? Who would ever have thought my happy, healthy, giggly boy had autism? He wasn't Rain Man or a savant or sitting in a corner banging his head. There just weren't any dramatic signs like the books indicated there should be.

The books need to be rewritten.

Anyway, how did/do you--as a parent, relative, care-provider, teacher, therapist, or doctor--recognize that some invisible line had been crossed with your/a child?