autism awareness month

Did you know April is Autism Awareness Month? It's awareness month for several other things too. I just googled it and got a lengthy list, including IBS awareness. Well, having a child with autism could certainly make that worse . . . .

Anyway, I've read a few touching stories on various websites this month about the trials and blessings of having a family member with autism. Most things I read were about an individual extremely affected by autism, and the triumph in finding a way for that person to communicate or discovering a hidden talent. Hats off to those families. I stand in awe.

So it's been a while since I've detailed how autism is affecting our lives these days. Of course it's interwoven into every post. My perspective on every event of Luke's child will always be seen through the eyes of an autism mom. But our burdens have changed so much since my early blogging days. Praise God! But the burdens are still there and I guess the best way to explain that is to describe my week.

Saturday night, Luke's eyes suddenly became very itchy and started swelling. I gave him benedryl and a bath. And I skyped with my awesome pediatrician sister-in-law who thought allergies. Sunday morning was worse. I was ready to call the pediatrician. But once the benedryl kicked in again, he got relief.

This is the photo I sent Lamar at work to show him how much better he was looking. We took him to the doc Monday morning who confirmed my sister-in-law's diagnosis. He recommended allergy meds and I explained that I would not put him on zyrtec again. He took zyrtec at age 2, and, as I told the doc, "It pushed him a little further down the spectrum." I didn't realize how drastically it affected his behavior until we stopped it. Apparently I'm not the first to complain about this side effect and he suggest allegra. He also suggested some eye drops and perhaps we'll try a nose spray in the future. I was sure Luke would protest the eye drops and saline spray (just to get him used to the feel) but he's been doing just super. His comment on the eye drops was "That's really chilly water in my eye." And now I'm over analyzing every behavior this week, wondering how the allegra is affecting him. Allegra apparently does not cross the blood/brain barrier. We'll see.

And so after missing school on Monday, going back Tuesday was not pleasurable. Luke's started talking a lot about first grade. He's fixated on he and his 3 bffs (3 girls who I seriously doubt reciprocate his adoration) being in the same class. I've specified I do NOT want him with these friends next year, and Mrs. W agrees. Since he keeps bringing it up, with the Mrs. W's permission, I told him he definitely would not be with them next year. He said, "OK, I will tell the girls," and whispered under his breathe, rehearsing how he'd break the news.

This led to a conversation on Luke varying who he plays with. He eventually told me he wants help finding new friends to play with. We had an impromptu meeting with Mrs. W in the hallway Tuesday morning to discuss how he would like her help finding new friends to sit by and play with (She's been encouraging this all year.). And he's had some success this week, but the lure of the girls has drawn him in a few times too.

And Luke has decided once again that he needs a parent at lunch with him everyday. Lamar and I have been to a LOT of kindergarten lunches this year. The kids are so used to us being there. Yesterday one precious little friend asked me to mix up her cookies and cream ice cream so it would "look all chocolate." I tried, but did a pretty lousy job. Her comment, "Well, Mr. Lamar can do it."

Lamar is working a later shift today and I had to work this morning. Luke wanted me to eat lunch with him. I told him the only way for me to be lunch was to go to work early, which meant Daddy would have to take him to school. (I always do drop off.) He said this would work. So, I gave in on the lunch but we did work on flexibility in our drop off routine. My thought was we'd work on the lunch issue next week.

So I just discovered there is tea for the adults in the lunchroom (I'm not much on eating with the kids. It's pretty gross.) Today I was getting my tea when Luke was sitting down at the table. Seat selection always causes him some anxiety, but he did fine today, all by himself. He also went by himself to get ice cream. Now I'm thinking maybe I just need to help him have confidence and independence at lunch.

Perhaps you're wondering why the school doesn't have support for him at lunch. They do! But Luke will not allow his aid to help him at lunch. He really doesn't like every having extra help. He does LOVE the aid that brings him to the pick up line after school. She just happens to be gorgeous. Trouble, trouble.

Today is show and tell day. Luke took giant play penny he got from the treasure box at therapy, and some mardi gras looking beads that he said are "tiny disco balls." I hope his class finds this funny. It's always a big let down for him when they don't respond as he anticipated.

I've heard from several autism moms that "social issues" were the biggest challenge of kindergarten. And I thought, "Well, Luke loves other children so that shouldn't be too hard." But teaching him how to respond in social situations, where there are no absolutes for how his friends will react, is a big challenge. For example, yesterday at lunch (yep, I've been 2 days in a row) the little girl sitting next to him was pretty grumpy. Luke wanted to whisper a "secret" in her ear and she said she didn't want him close to her face. She continued to whine and complain about various things. Luke continued to try and tell her something, and she continued to get perturbed. I whispered in his ear, "Remember what you do when a friend isn't being nice or doesn't want to play?" He said, "Find another friend." So I said, "Well, you do the same thing when a friend doesn't want to talk to you." He said, "Oh!" and began talking to the girl sitting across from him.

He doesn't always respond so calmly to correction, particularly at home in the evenings when he's tired, but he's getting so much better about remaining calm and rational.

I am nothing but thankful for the progress we've made. My heart goes out to all those parents working every day to teach basic language and play skills. Those days are so tiring! But there are things about teaching language that I think were actually easier than teaching how to navigate the complex social structure of kindergarten. Multiple times each day I wonder if I'm enabling him or being too demanding. But I chose to believe that God has led us to this place, with Luke and his uniqueness as our only child, and I trust he'll lead us down the right path. It's the only way I know to live.