We’re back to chelating this week again. My son seems calmer today than he has lately. So that’s good! We are using just alpha lipoic acid for rounds now and he is doing very well with that.
Our last school meeting we were told that he does not demonstrate any need for speech therapy. He is not lacking in social language or social interactions with his peers. So he no longer needs this therapy. He’s the only child in his classroom that understand and uses humor and has empathy to relate to other people’s experiences. The therapist said he displays appropriate normal social reactions.
So that’s a victory for us.
Over the past week we went on a trip 4 day trip. My son had never been on a 14 hour drive before but he did exceptionally well. We would never have attempted such a trip 3 years ago. He could barely manage a 3 hour drive back then. When he was 3 years old, an hour drive was impossible. But now…..he did great. He was very interested in the sites as we traveled. He entertained himself with his games and snacks. He was so excited about staying in what he called a “five star hotel” that he was a bit impulsive and hyper when we arrived. Mind you, we were all beat from the long drive and he was cooped up in a vehicle for 14 hours. But he was having fun checking out every button, switch, door, etc in the room. I had asked him a few times to settle down and have a seat because we were trying to unpack. At one point I asked him why he was doing all this, and he told me, “Well mom I’ve never been in a five star hotel before. I don’t know what makes it a five star one so I have to check out all the things here”. I guess he did have a very valid point.
We often forget that our children process things differently than we do. To him…because it was labeled “five stars” it must have something fantastic about it and he needed to inventory it. Mind you’d I’m talking about a La Quinta, which was a nice place to stay but it’s certainly not the Ritz. But to my son, it was “five stars”. He has spent days asking me before the trip if the place we were going was 3 star, 4 star or 5 star. Finally to hush the repeated questioning I said it was a five star. After all that’s what customer reviews rated it as.
He really enjoyed swimming in the pool and the chlorine did not bother him this time. He ate what he wanted including frosted flakes and a chocolate muffin at the hotel breakfast! He had Doritos in the car. I would have completely flipped if he ate this stuff years ago. We did not have any reactions or behavioral issues from the dietary change. He skipped his CLO for 3 of the days we were gone and he missed his probiotics 2 of the days. We were scaled down to just morning vitamins which consist of his multivitamin, adrenal support, inositol, thyroid support. I expected complete chaos without his regular vitamin regimen. But it never happened. I could not have imagined a day where we could skip supplements and not have a regression. But it’s here.
At night it did take him a while to settle down to sleep, mainly because he did not have his sleep CD music and bedtime story but by 10pm he was asleep. He liked the screen saver on the hotel LCD TV. It has the scene of the ocean with a full moon, and you hear the sound of waves. This was calming for him at night.
One of the evenings he was rather out of sorts with following our instructions. He wanted to push all the buttons in the elevator. He wanted to turn on all the lights at bedtime, and make sure they were all on, so that when you turned off the bedside switch they would all go out.
While none of us really understood his actions with these things he later explained himself. Dad asked him why he was not behaving like he does at home. He said “at home I know the rules, but here I don’t know what the rules are. It’s so confusing!”
We often forget that children with ASD do not always transfer their knowledge to new situations. Once we told him to use his home rules there, he was fine.
It is hard to believe how far he’s come. We never could have made a trip so far away or have missed supplements or let him eat what he wanted 5 years ago!