Goldilocks and the Three Bears

Brother Bear received Civil Air Patrol Honor Cadet of the 2013 Illinois Spring Encampment. As I understand it this means he is embodying the values and code of Civil Air Patrol to the best of his ability. I couldn't be more proud.

Brother Bear—Outstanding Student of the Month!

Brother Bear's school named him outstanding student of the month. From the school newsletter:

[Brother Bear] is a hard worker with a great attitude. He approaches challenges in a positive and productive way. Keep up the good work!

I do.

Seventeen years ago today, we stood up at the end of the Sunday morning service and said, "I do."

I still do.

Happy Anniversary, Mama Bear!

My Grandpa died on Friday

He was 81. His heart had been failing for the last five years, and his
kidneys for the last two.

I remember that he worked a lot, not only at his business (he was in the concrete business) but also on various projects around the house, shed, or garage. He was always making things. I remember that he
smoked a lot. Growing up, I don't remember seeing him without a cigarette, unless he had to be somewhere smoking wasn't allowed. Then he found reasons to go for long walks. After dinner, he would sit in his favorite chair in front of the TV with a book in his lap, and fall asleep. His snore sounded like Grandma's old-fashioned percolating coffee pot, but loud enough to be heard through walls and from one end of the house to the other.

I remember how much he loved passing out the presents on Christmas morning. I remember that he took me fishing, and taught me how to cast at the proper angle for maximum distance. He had a deep voice, a gruff manner, and a loud laugh. He would say amazing things, and give us funny nicknames, and you had to watch his eyes to tell if he was joking. These things made my sister afraid of him when we were little, but filled me with a feeling more akin to awe. I remember him on holidays and at family reunions and picnics, eating, smoking, drinking, laughing, and swearing. He wasn't safe, but he was good. And I loved him.

For all who have died in the communion of your Church, and those whose faith is known to you alone, that, with all the saints, they may have rest in that place where there is no pain or grief, but life eternal,
we pray to you, O Lord.

We finally have a diagnosis!

The day after GL turned sixteen, we finally got a diagnosis. He has a chromosome 17 q12 x1 dn microdeletion. This doesn't change the fact that he has autism, but 100% of males with this deletion have autism, so the genetics clinic considers the chromosome disorder to be his primary diagnosis, and autism to be a feature of that disorder. He was part of the first study linking this disorder to autism, but now there is enough data in to confirm it.

This doesn't change our expectations or plans for him, but it is strangely reassuring. In his particular case, we know that autism is the result of a missing gene, not an environmental factor. It wasn't anything we did. It is also a de novo deletion: we both have the piece he is missing, but God chose to leave it out when making him (some would call it a random mutation) so he didn't inherit autism from us. That also explains why his brother does not have autism, and relieves our fears that this was a factor in any of the miscarriages.

Labels: autism, diagnosis, Not a Tame Lion

Happy Sixteenth Birthday, GL!

For his 16th birthday, GL wanted to go to Chuck E. Cheese's with Mom.

Hand-Washing

One of my favorite bloggers, Big Daddy Autism, posted today: Live Long and Wash Up. His post got me thinking about GL's washing (and not washing) his hands. I meant to leave a quick comment, but by the time I was done, it was almost a blog post of its own. Since I haven't posted here in a while, here it is:

Ah, yes, hand-washing. At least this was one of GL’s quirky habits that did not bother us too much. Until he started scrubbing them till they bled. His doctor put him on a medication that eliminated this compulsion. Unfortunately, he abruptly stopped washing his hands. Ever. He seems unable to see or feel peanut butter, jelly, dirt, and even more disgusting things on his hands, even in layers a quarter-inch thick. Since one of his favorite foods (and one of the few he can prepare independently) is peanut butter and jelly sandwiches, and since he gets rather messy in the process, his hands are sticky most of the time. Since he steadfastly refuses to wash them, the countertops, cupboard handles, doorknobs, walls, and floors, in short, every surface he touches, are sticky, too. We try to clean up behind him, but we can’t keep up.

Since he is a compulsive rule-follower, provided the rule doesn’t conflict with his own inexplicable code of conduct, I sought a rule that would minimize, or at least partially contain, the mess. I hit on one: requiring him to use a plate for his peanut butter sandwiches. It took a while, but once it was established in his mind as a rule, he wouldn’t think of having a sandwich without one. This has contained the mess somewhat—less jelly makes it to the floors, walls, and doorknobs, but the mess on the countertops and cupboard handles remains about the same—but now, every time he makes a sandwich, he spreads peanut butter down the rims of all the clean plates stacked in the cupboard while selecting one for his sandwich.

The Bear Family Enters the 21st Century

After years of dialup, we finally got cable Internet! The basic, slowest kind, but it's way faster than dialup, and it doesn't tie up the phone line. YouTube videos work, though not especially well, (they tend to pause for buffering unless on the lowest resolution) but videos on dialup were impossible. I don't plan on watching many videos, but streaming audio works fine, downloads are faster, and pages that downloaded slowly because they were graphically intensive are right there. Pages that load slowly because they are on a slow server are still slow, but now I can tell the difference.