Wednesday, March 05, 2014

ABC's of Autism - Q

Q is for Question.  Or query.  My dearly departed friend LeBron used to make a joke, where he'd say "I have a little query", and then he'd say, but really, what prep school boy hasn't? Ha!  

I have so many questions about Autism.  And Anthony.  And now epilepsy.  And medication.  And life.  And state supported waivers.  And - just everything!  

Specifically, we are having the hardest time lately with Anthony.  I took him for a checkup at his neurologist and reported that he had had one 'breakthrough' seizure, which I guess means that it broke through the medication?  Anyway, he wanted to up the dose so we did.  Also, he prescribed Anthony a medication that is used for ADD, he said it would help him focus and that it would be great to see what Anthony could accomplish if he could focus on it.  I agree, of course, so we decided to do it.  

There were some problems.  He gave me a card which said that I'd never have to pay more than $20 for a copay but the card was expired so instead we paid $84.  We have to give it to him early in the morning because it wears off all day and this way maybe it wouldn't affect his sleep, or his appetite.  It was also more medication to give him and we have had a hard enough time giving him the seizure medicine, so it was a lot to add another 2 mls, even though that doesn't sound like much.  But we did it.  

It's been like two weeks and we are seeing absolutely no difference in a positive way from the medication.  Certainly we are not seeing 'focus', whatever that looks like.  They have been reporting from his school that he gets a little weepy and cries at around 1:00 each afternoon, but we haven't seen that on the weekends, so I think that is probably more related to school-related stuff.  Since we upped the dose of his epilepsy medication, we have seen a lot of aggression from Anthony and it's terrifying.  I swear I would rather have him have a seizure than raise his legs to kick me in the face, or pull my hair, or both at the same time.  

Last night I took him to OT, and it was a mess.  We were early so I said let's go get you a soda, which I sometimes do when we are early.  I wanted to get one for me too because I was so tired I thought I'd fall asleep at the wheel.  But the McDonald's drive through was all messed up, I left after a few minutes of un-moving cars and went to the Hardees next door, but there appeared to be some kind of a problem THERE too, and anyway we were late.  Also, Anthony squooshed his soda all over him, soaking his shirt, underwear and pants.  I had everything in the car so I tried to bring him inside to change him and that's when he kicked me and then he slapped me.  I mean.  That makes me really mad!  I am turning myself inside and outside every damned day and he's going to HIT ME?  Really, I said?  REALLY?  Then I got a hold of myself and said, Anthony.  You can't hit me because we have to go inside and go see Amy, so let's go, and he did.  Then he peed all over his new clothes five minutes later and at this point I just wanted to go home.  He was CRAZY, like some kind of jungle boy.  Amy, his OT, said no, he really needs to be here when he's acting like that, which I really appreciated.  Every time he acts out or something happens at his school, they call ME to ask me what's going on to cause it and I'm like, really?  How the hell would I know?  I never see him and when I do he is pulling my hair!  I mean, I know they are not blaming me but it feels like it to my paranoid mind and it was a great relief last night to have someone try to help me.  

Soooo, I put him back in his soda pants, which were at this point better than the urine pants and that Amy got him completely calmed down and sweet and back to his normal self.  Mike and I decided that we aren't going to give him the ADD medicine anymore, I mean, what is the point?  It's not doing anything but hurting him if he is taking a medication that doesn't work, right?  We also decided that we are going to go back to the original dose of the epilepsy medication and see if we see less aggression.  If you google aggression in autism, what you will find is a lot of recommendations for Risperdal, which is an anti-psychotic medicine and has a million side effects, ranging from weight gain to, oh, early DEATH, which, COME ON!  Personally, I think that what Anthony is dealing with is the anxiety caused by not being able to TALK in a world of TALKING and it is bringing him down and he acts out by jumping, climbing, slapping, pulling hair, kicking, etc.  Mike and I have to figure out how to control it so that we can win in the race against time wherein Anthony gets bigger than us and starts hurting us, or God forbid, the girls.  

The thing is, I really think getting Anthony his service dog would help, a lot.  But there are more than 60 people on the waiting list for dogs and I don't know when we'll get the call so I have to do something in the meantime.  I haven't even mentioned it to Anthony's neurologist because I know that I would come across like some crazy dog lady or something, suggesting we replace medication with a dog's love, but I honestly think it would help.  

But again, there is no one to help us.  No one to guide us, only medical professionals to suggestion things that I know won't work but I do anyway, because I am so desperate for help.  For the first time in a long time I am really scared about what is going to happen to us.  When Anthony acts like he's been acting, tearing the glasses off Mike's face, laughing maniacally as he kicks me in the throat, I think, he can't live here.  He can't live with us and be like this.  It is a terrible thought and I don't want to have it but I have to think of everyone here and in order to do that, I have to think if one of the people here is kicking the ass of another person, something has to be done.  So we will try, but man.  I really wish we could get some help.  


Leeann said...

Hugs, hugs, hugs. Seriously, tons and tons of hugs.

I'm glad you took him off the ADD medicine. My youngest son was on them for about a year and a half and they definitely made him more aggressive and angry that he is. He wasn't so much physically aggressive but he was nasty verbally and in his attitude. Surely is he hadn't been able to talk he would have been slapping and kicking like Anthony.

Risperdal has been in the news lately. I haven't read it but I know that it has been discussed and not in a good way. Just FYI.

You are such a good, good Mom. I can see that and I'm sure that others can as well. Just know that and try to remember it during the times that are rough. You do a really good job.

Aly said...

Prayers and hugs...always <3 I wish i was there to help, talk, give you a break, a hug, have a beer...anything! Your friend Leeann is and Mike are fantastic, loving parents, and people! God Bless you all. Love and miss you-- XOXO