It’s been a while since I’ve posted any personal updates about my child’s progress. That’s primarily because autism doesn’t limit our lives that much anymore and I get busy with the forum, helping others and homeschooling.
We eventually opted to take him out of public school for many reasons and that has in turn been a good decision for him. He is no longer limited by what they refuse to try to teach him!
We plug away at rounds and occasionally have things that come up like a cold or sinus infection or trouble sleeping, but nothing really difficult to manage. For a while we were not seeing anything with chelation at all and I think we may have had another stall period. I could swear we have seen two or three of these over the years. But since his hair test still met rules I knew there were still metals to deal with.
Just when I thought nothing more would happen we did begin to see subtle improvements in reasoning, self help skills and organizational skills. And I hear reports all the time from parents who are farther into chelation like we are that they are still getting improvements too.
This past year has been full of growth and change for him in most all areas. He decided to take it upon himself to rebuild all his Lego kits, and invent some amazing Hero Factory robots that he built out of a bin of Lego Hero Factory parts. He’s embellished them with features they don’t sell them with. What is amazing about this is that some 6 months ago he could not even attempt to rebuild a Lego kit without giving up 5 minutes into it. He found it very hard to focus that long, sort the parts or make his way through it without frustration that resulted in giving up. But this past month I watched him spend hour upon hour working on putting a large Lego kit back together and he kept at it until it was done. He spent a few hours every day working on one after another until he had almost all his kits back together. He could not have done those six months ago.
What is most amazing is that he tends to complain about social events but once he’s there he’s fine. We haven’t had any issues with social awkwardness, inappropriateness etc. In fact, lately it’s the other kids that tend to look like they have a problem and that’s how you know your child is really doing well. We’ve met many new families this year through homeschooling and none could tell he was labeled with Asperger’s because he doesn’t really behave that way the majority of the time.
He does still enjoy some sensory pressure with a weighted blanket and can still be picky with food texture or smells. At times he’s tolerant of touch and but doesn’t mind hugs. Other days he’s more sensitive but he’s good about telling you that. We’ve learned to respect his sensitivity and not force the issue; it’s just part of him.
He doesn’t have any problems going out to the store, restaurant, museum or any other public function. Rather lately he’s the one commenting about “what’s wrong with that kid over there mom? Why is he acting like that?” but he understands why. If all of this has taught him anything, its tolerance and patience for kids more affected than he was.
I don’t know when this happened actually but I realized the other day that it’s no longer a battle or issue if we want to go somewhere. We just announce we are leaving and for him to get ready. He does and then we go. He used to tantrum, hide and all out refuse. But somehow this slipped away in the past few years.
I was completely amazed on Monday evening as he sat and played a board game with his 90 year old great grandmother. He displayed such patience with her if she forgot something about the game or couldn’t remember things, which happens from time to time as her short term memory isn’t what it used to be. He laughed with her, and played with her and they had a great time. And I was worried about how he’d handle it? I didn’t need to worry apparently.
About a month ago we encountered some issues with him getting to sleep at night and waking up in the night. He also wouldn’t eat breakfast in the morning and reported being nauseous which is usually from low cortisol. I began charting his temperatures and verified his adrenals were stressed out again. So we went back on adrenal cortex extract. Within two days of putting him back on it, he was hungry when he woke up!
He’s also taking a bit of melatonin if he needs it at night to help get him back into the habit of falling asleep at a reasonable time. I can’t explain the fluctuations in endocrine function that happen with our kids with chelation but I have seen the same thing in my other child. There will be a period of 3-9 months where they don’t seem to need adrenal support or thyroid medication but it doesn’t always last and they end up back on it.
We have moved to ALA only rounds for now and he does very well on them. There have been no symptoms on or off rounds. We do about two rounds a month now. I’d like to be able to do more but at the same time it runs me down waking up at night. He’s already asking me when he will be old enough to set his own alarm to give his own night doses so he can do more rounds!
You never know what changes will appear or how long you will have dry spells but you have to keep plugging away until those metals are gone to assure optimal future health. It isn’t always easy and it does take a long time. I’ve seen so many parents abandon chelation at the less than halfway point because they have hit a stall period and think it isn’t working. They may choose to spend money on random therapies or specialists but most of the time they come back to finish chelation because it was the only thing that gave truly lasting gains. It’s hard to believe we’ve been at this so long but it’s just a part of life now like brushing our teeth.