Max is still up. He’s having so much fun playing Nickjr.com radio I haven’t forced him to stop yet. It’s the first break I’ve had all day. Whew.
Tomorrow will be a very busy day. We’ve got an enormous amount of cleaning to do to get ready for Max’s first visit with Pam, the hab-tech who’s coming in this week to help us out until our new official hab-tech steps in. She’s coming tomorrow night around 6pm and will probably be here an hour or two. I told her we’re going to leave Max in his natural state so she can see how he really is in his home environment. He’s regressed a bit since the end of the school year thanks to all the disruptions in service and all, so the potty thing has fallen down and he’s back to not wearing clothes most of the time again. I try to sit and play with him and work with him, but he just wants to lash out at me. Without much support from Cliff I’m really on my own right now. I mean Cliff’s never really helped with Max much other than cooking and the extremely rare times I’ve fallen asleep when no one else was here to help watch him. I wish he would participate more, but he won’t. There are some things I can’t teach Max and he really needs his daddy to do this, but Cliff just won’t. Now with Marjorie being promoted to cake decorator and working a full forty hour week it’s really just me and Ian doing all of Max’s care and it’s really even worse now without the outside help we usually get. I’m anticipating an extremely difficult next two weeks.
Which is why I’d like to slap these Jenny McCarthy types around a bit. Geez. You know we did all the stuff you are supposed to do when Max was originally diagnosed. We put him on the special diets, GFCF, etc. Mom bought him some ridiculously expensive liquid vitamins (that smelled like vomit frankly) that he would instantly throw back up when we could finally hold him down long enough to get it down his throat. We tried the weird therapies. We tried everything. The only things that changed his life were his teachers, picture communication devices, Ms. Jackson, Janice Florio, a mile or two of constant patience and Max’s own computer. But, he’s still Max. He still has all his behaviors. He still stims like crazy when he’s at home and we let him, because hey, he must need to do it. It sure makes him a calm guy out in the public. I guess happy at home means happy away from home, at school and OT and everywhere. There are some behavior things we still need help with and there’s still skills we need to work on, communication, potty, teeth brushing, etc. But hey, I feel like there’s quite a bright kid in there. I wish I could show online how good he does with his computer. In fact, he got mad one day at school last week because the computers at school aren’t fast enough for him. He’s so used to the one he has here at home. Anyway, while I know there’s no definitive answer of the cause of autism, there’s a few things floating out there that I completely agree with, and some I don’t. I don’t agree that immunizations cause autism. I just don’t. Logic should show that isn’t the answer. If it was, it wouldn’t be the worldwide epidemic it’s become. Changing Max’s diet did not change a thing for him. None of his behaviors changed. The only thing that did happen was he quit eating some of the foods he loved because he could taste the difference. Changing his diet was in large part responsible for making him narrow the foods he would actually eat down to two for about two years. (Spaghetti and Captain Crunch cereal. Not together of course. 
) The same thing happened with the special liquid vitamins. When we tried being sneaky and putting the stuff in his juice, he stopped drinking entirely. Sensitive just isn’t a strong enough word!
In the end, I can say that I haven’t cured Max’s autism. I don’t expect it to ever be cured. But I will not put him on pills or radically change his diet again or subject him to some of the stuff the specialists all tried back in the beginning, because I know he’s one happy kid just the way he is. All I want is to make sure he can handle his bodily functions and self care, communicate with people who don’t know him, and to learn to read and write or at least type. (Actually, I know he can already read some. You should see him on his computer!!! Using closed captioning on the TV has helped with that too.) I predict that one day I’ll be hosting his blog and he’ll be able to tell the world what it’s like to have Max’s form of autism.
I guess I’m saying the basics are there. He’s not brain damaged, his mind works just fine. He just can’t talk at all and sometimes has troubles with repetative behaviors and does lots of stimming. And so what? He’s quite the clown at home and quite the little devil at times too. He does manage to get his way, one way or another, whether by charm or by mischief. You can see it in his eyes when he’s up to something. His teachers, his OTs and Ms. Jackson have all seen it. I think, if we can get through puberty without any seizures appearing then he’ll be okay. Someone will have to care for him forever, but he’ll be happy and healthy. Just make sure his computer is fast enough… ABout the only thing I am afraid of, outside of the possiblity of seizures at puberty is agression. It’s already pretty bad. Has been for years. Even when’s he’s giving you a hug he’s crushing you. I’m not sure he’s aware of how strong he really is.
Now Max’s doctor wants us to try giving him Adderall. She asked us to think about it and we have. We’ve decided not to. Try getting any medicine in this child. And we know the outcome of hiding it in foods. Plus, Ian started getting headaches on his Adderall. Her answer was to give him MORE Adderall. Instead, Ian tried going without it for a week. He never went back on it. His headaches are gone, his appetite is back and he’s exactly the same without the meds as with. Maybe Ian has outgrown his so called ADHD and NLD? I sure hope so. We’ll know for certain once school starts. But I don’t want to risk losing the progresses we have made with Max just to try giving him a medication that may not do anything for him at all.
And hey, Max is supposed to get shots next Friday. Great, right? I thought it was only one, but it’s THREE! Wish us luck. It’s gonna take an army to hold him down. 
And now, after getting Max put in the bed, talking to Ian, doing something in the bedroom and coming back in here to finish this entry it is exactly 1:16am. The crappy bed is calling me n a creepy Scooby Doo ghost voice. “Come try to sleep on me without falling off, come try to sleep on me without falling off….”