challenge test

We're done with the first 2 months of chelation. So, yesterday, we did a challenge test. We haven't done one of those in about 3 months. We used a 750 mg. EDTA suppository. I had forgotten how hard the challenge tests are on him. For the first 3-4 hours after I gave him the suppository, he wanted to do nothing but sleep. You could tell he just felt horrible. His little cheeks were red and flushed. He wasn't interested in anything, really. Just wanted to lay down, or be held and rocked.

BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.

We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.

You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.

notes from therapy

Friday's notes:

Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.

Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.

Inappropriate behaviors:


one day at a time

I have always been a worrier. I worry about everything under the sun. Most of the time, I worry about things that haven't even happened yet. I worry about things that "could" possibly happen. I worry about the future.

One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!

Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.

I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.

Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...

And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.