When my youngest son was diagnosed with autism (I am one of those moms who don't remember the age, around 2or 3ish...heck I can't even remember the exact weight of my three babies! *sigh*) I knew my life would be different than the average persons. I am a very introvert person...sometimes I wonder if I would have been diagnosed with autism or Asperger's if they did that sort of thing when I was younger. Or at least if it had been more common. I have found that having an autistic son has forced this 'hermit' to come out of my cave a bit.
I have always thought I lucked out. I may have a child with severe autism, but he's so happy! I remember when the early interventionist first came to our home to meet Elijah and before she even laid eyes on him she said she knew he was a calm happy child because most of the homes she'd gone too the parents had no plants, no curtains, and no ornaments or picture frames up, because their child wouldn't allow that. He was a blessing to work with, because he was just so happy!
He's still happy. I always tell people he's 99.99% and the only reason I didn't make it a full 100% is because in March every year he goes through a sort of winter blues thing that lasts for about a day. But as of late, he's just so irritable!! And I try so badly to make him happy and it is just about nearly impossible.
But then what does he have to be happy for? He can't look at the world like others do. He has a mom and dad who love him more than anything, he has a home with food and warmth, and a nice bed to sleep in.
But he also has the inability to communicate! He's 14 and he can't do PECS, he can't sign, and he can't talk verbally! He must be so frustrated!!! I think even that would drive me crazy!! Even when I'm by myself and stub my toe or something I use my words to express my frustration. Elijah can't do even that!!!! He just has to hope that someone realizes what has him upset. It has to be a frustrating world to live in!
And what else? Well he has extreme eczema in his head that if his hair even gets an inch long it gets so itchy he scratches it until it bleeds! I asked the dermatologist about this and his solution: it needs to be washed 2 or 3 times a day!!!! Seriously!!! Take a dry head and dry it out even more??? My mom suggested baby oil and it helps a lot, but still if you don't remember to do it all the time it only takes one missed time to flare up again. I'm not superwoman and then I spend the next few days beating myself up about forgetting!!!
Of and what else? Having autism and the inability to communicate and eczema wasn't enough!!! no, no! He also has hidradenitis Suppurativa which is a chronic boil condition. Right now he has at least 10 boils on his body!!! The dermatologist gave me pills for him (next step is surgery). You wanna know how I have to give him the pills? I practically have to abuse the child!!!! I have to hold his head back, stick two fingers in his mouth to hold the pill back in his mouth and hold his tongue down, and pour water in and then hold his nose until he can't even breathe! It's a nightmare that doesn't guarantee I will have fingers when the ordeal is over. The pills can't be mixed with anything daily and the only thing he'll take it mixed in is dairy! So guess who hasn't been getting his pill? I just can not do this....I can not take a child who is angry already and make him angrier!
Have I mentioned that he is 6'5" and weighs about 300 lbs!!!!
So I contacted his psychiatrist and he said you know there is such a thing as a compound pharmacist that can take those pills and make them taste like a piece of candy. What????? Why the heck wasn't I told this. So he contacted my pharmacist, who contacted another pharmacist and they did a bit of research and to get these pills compounded would cost $100 for 10 pills....I needed about three months worth so basically $1200, and not covered by insurance! Great! So we went to work trying to find some way to make this possible! In the meantime the 2nd pharmacist called me and said so have you ever tried peanut butter!
Peanut Butter! Me, the dermatologist, and the 1st pharmacist scoured our brains trying to come up with a way for him to take this pill and we never thought of peanut butter. And it works! Hallelujah!
However is the meds helping his boils...well it certainly doesn't seem to be! But maybe it takes time, so I'm going to keep trying it.
Most people think of Canada and think free healthcare. And that's true. I can't vouch for other places, but here in this small community I live in, the hospital is closed half the time. Our family doctor, an awesome doctor who was doing the work of at least 2 doctors, retired. And although there are other doctors in surrounding communities they aren't accepting new patients.! We have an on call Doctor, which is all the doctors who take turns being on call. My son got sick and I called one and the secretary tells us they can't take us because we live out of their zone! I'd love nothing more than to have a Doctor so I can make an appointment and have a full check up for Elijah.
So the last month or so Elijah has been so angry for more days than he's happy. The last two days he's been lashing out at me. It gets pretty stressful! I go out of my way to try to make him happy. But really the only thing I can do is wait it out, stay out of his face, and try to make it through. But I can tell you that for me, it is really taxing on the nerves.
I'd love to hear from other mothers of autistic children. I think a support system is so important. yesterday my husband took the day off work to help me out, and I don't know what I would have done if he hadn't done that. Support is key here and if anyone wants to talk I'd love that.
~R
