Tuesday, February 23, 2010

Why are we arguing over a HYPOTHETICAL autism cure?

I read a blog post by Casdok last night that kind of got me thinking. I know that each and every one of us ("us" being parents of children with autism) has pondered and probably blogged on one particular topic. That ridiculous hypothetical "if a magical pill that instantly cured autism became available to the public, would you give it to your child?" All opinion aside, it got me thinking about whether it would be some huge blessing to suddenly become "normal."

I'm "normal." I don't live a blissfully perfect life. I deal with overwhelming anxiety that can make even the most trivial things a Big Fucking Deal.

My husband is "normal." He is driven nuts by any messes in the house, and even when he's exhausted, he can't help but clean it up.

My daughter is "normal." She thinks that there are toddler eating cows in dark rooms, closets, under the bed, and anywhere else creepy. Her cow fear is so bad that she cannot be taken to a Chick-Fil-A.

My sister is "normal." She lives with an abusive scumball of a husband.

People dying of cancer are "normal." People suffering from a whole pile of diseases are cognitively "normal" but life isn't all peachy. Does this normality magically make their lives that much more wonderful? Does it make them worthy of being part of society? Does it make their lives worth more than an adult with autism, like Casdok's son C.?

What is normal anyway? If Jaymes wants to walk around Walmart repeating the phrase "Si-Si murrrrrrrrr" at the top of his lungs, what does that hurt? If he stays in diapers until he's 18, yeah, it sucks, but ultimately, who does it hurt?

We as parents take on certain responsibilities when we choose to reproduce. We are obligated to care for, love, and defend our kids regardless of whether they are autistic, gay, have red hair, become emo goth kids, or prefer Coke over Pepsi.

Until such a cure becomes available, why is there such hot debate over what each of us would hypothetically do? Why are people so angry over a hypothetical decision being pondered by someone on the internet that they will probably never meet?

I just don't get it.

For me, I love Jaymes. I love him when he's screaming. I love him when he bites. I love him while I'm scrubbing poop off his bed. I love him when he's happy, and when he's sad. I love him while he repeats random scripted phrases to himself. I love him while he spins in circles. I love him when he has a meltdown and needs to be held still to protect him and the people around him.

Autism sucks. But our kids do not. I'm all for helping these kids learn new skills, and to function in everyday life. I'm all for supporting our kids in the community. I choose to work toward helping my child, and enjoying him while doing so. I choose not to scream and yell and desperately pray for a cure. I choose not to bother worrying about a cure until the day it happens.

I choose my son. I reject the idea of mourning his existance, of wishing to have the kid he could have been. We don't need "normal" to be happy, we make our own happiness.

Pony excitement... and stress

Why have I not been blogging lately, you ask? Well. School continues to kick my butt, and I am so happy that I decided to forgo summer classes. I need a break, it's just absolutely stressing me out.

Also, the much awaited Rocket the pony arrived on February 13th. He is as adorable and loving as described, and we are all in love. Unfortunately, Rocket has some pretty serious hoof issues and needs some vet stuff done. Luckily, his last owner is super womderful and is dealing with most of that. I feel bad for her, owning a horse and being in college several states away is not an easy thing. Anyway, I have been spending the spare time I should have been blogging on horsey time. Cleaning stall, soaking hooves, reading up on White Line Disease. It's so nice to have a horse again, I really missed Lucy a lot- still do, in fact. It really helps my sanity to have stall cleaning, horse grooming, quiet time for a part of each day.

Rocket will be heading out to Greensboro for a second farrier opinion, then to the vet later next week for xrays of his hooves and to have his dental stuff done. He'll be good as new in no time. Or maybe a little time. Either way, he'll be good as new. I loooooooove him, he is such a silly character. This is what he does with his water buckets when he gets bored and it's warmish outside...

As a result, Rocket will be getting his very own plastic kiddie pool, in hopes that he will splash in that and not in his drinking water!

Also, next week my friend from Australia is coming!!! I am soooo excited, she's a horse person too and it's going to be a ton of fun. There will be pictures, and blogging to go with that visit, I promise.

So, in conclusion, sorry for my lack of blogging these days. Life is so crazy, and I hate to feel like blogging is a chore, and not something enjoyable for me to do. But, as I will not be doing classes this summer, I implore you to stick around and not un-bookmark me yet- the old daily blog post will be coming back. I promise. Really. Now, go look at the cute pony video.

Tuesday, February 9, 2010

Medication changes and regression, or "MEETCH"

Jaymes has been going through a strange phase lately! Might be a result of his Risperdal being less effective, could be the 2 weeks off of school during the Snowsplosion, could be having missed four OT sessions (finally, he'll make it to tonight's session! Could just be his semi-annual verbal regression phase. Who knows.

I've been somewhat dismayed to notice that (at home and therapy, anyway) Jaymes is very rarely talking spontaneously like he has been. Where we had been getting beautiful whole sentences, I'm seeing a ton of echolalia and lots of what I call his "continuous chatter loop" which includes the following sets of sentences:

1. "Birthday cake, eating the birthday cake. Look at the balloons. Balloons up there, up there. Eating the birthday cake, Jaymes eating the birthday cake. Jaymes like'n the birthday party hat." No birthdays recently, or coming up. He just seems to like the topic of conversation.

2. (Talking about a kid in his class at school) "Nikolas poppin' the ball, goin' to time out. Bad Nick. Nikolas ate miss Tasha, Nikolas breakin' the fridge poppin' the ball, goin' to time out. Nikolas lickin' the ball."

3. (Anytime there is a baby nearby, on TV, or he hears one cry) "Baby's ok. Baby's ok." Repeated until you reassure him several times that baby is indeed ok. If baby is crying, "baby sad. Baby sad. Baby drinkin' the milk, baby puttin' the bottle in the mouth milk in the mouth."

4. "Red, yellow, blue, green on up there. Look at the up there. Red up there." No idea where this one came from.

It's quite frustrating because he will get stuck on a neverending loop of whichever of those options he chooses. The current favorite, and most annoying, is the colors loop. Even if you repeat what he is saying and agree with him, he can't seem to stop repeating it. It makes it hard to do anything, or to have any kind of conversation because to Jaymes, it is of the utmost importance that I understand and hear what he is saying. Poor guy, it matters so much to him!

The other things he says frequently, over and over throughout the day are the word "meetch," said at a painfully high pitch at the top of his lungs, and "Si-Si murrrrrr" in his strange low voice. He says these hundreds of times through the day. I'm not sure where either came from, or what they mean, but I do know that repeating "Si-Si murrrrr" to him makes him wiggle in delight and laugh his little head off. What can I say, the boy is a strange little soul. I think it's why we get along together so well!

Anyway, I'm sad to see that most of his "real" and spontaneous talking has disappeared yet again. But, on the other hand, his behavior has been excellent. The tantrums are less frequent, and his behavior in general is just that of a happier, more content boy. He is happy to snuggle with me after his bath, goes to bed without a screaming fit, and politely does what is asked of him. It's very nice, but I can't decide if the lovely behavior is worth losing the awesome speech we had going on.

At the beginning of the month, it was decided that Jaymes' 4 years on Risperdal have come to an end, as he seems to have become fairly tolerant of it. We switched over to Abilify, and I'm trying to tell if the Abilify is the reason the behavior is better, or if our starting it simply coincided with Jaymes normal cycle from challenging behavior and lots of talking to great behavior and not much talking. He is now on 2 ML of Abilify in the morning, 1 ML in the afternoon, plus his Clonidine morning and night, and the Atarax, which really is for his eczema and itching but has the helpful side effect of mild sedation. It complements the other meds really well, without making him overly sleepy.

I took him in to Allergy/Immunology a couple weeks ago for more allergy testing, because the Eczema is just terrible. They said that he is not allergic to anything. Go figure. Went back to Dermatology, Dr. Pitchardo prescribed a new med that I cannot spell and am too lazy to go get the jar to type it out. Something with a T. It's a steroid gel. We lotion him twice daily at home, the school lotions him three times. Even with this ridiculous amount of lotioning going on, poor Jaymes is still scaly. But, his tummy is softer than it's ever been, and he is not itching himself bloody, so although he is still itchy and scaly, it has at the very least become more tolerable for him. The bad news is that it's spread down to his feet now too, poor kid. The good news is that I think we've gotten it all off his face. He has not been scratching it and there are few, if any, scales.

The spitting on the hand then wiping it across the face is bad as ever, but it seems to be staying at the same level now, not becoming more frequent. The lotions keep the face from being chapped by the constant spit wiping, but it's still pretty gross. He often smells like rotten fruit (you know, that saliva smell), and people look at him funny when he does it in public. He still has to stop during some activities that he enjoys to wipe, but it isn't as bad as it was a month ago. It's showing no sign of going away either, but I'm just glad he's not getting worse with it. There is much face washing, because after a few dozen spit wipings, Jaymes develops this thick, gummy black line that runs from one ear, over both eyebrows, to the other ear. Overnight, it collects around his eyes until he looks like a raccoon. Doesn't seem to bother him, but it makes me insane!

Jaymes has mastered the whole one-to-one correspondence counting thing. I got him some suction cup froggies for the bathtub, and he loves to line them up, then count them. Sometimes he forgets and counts the same one twice, but in general I am sup[er impressed with him! Good job, Mrs. Colditz, she's doing really well teaching him the skills he needs.

In other news, school is kicking my butt, as usual, and I am looking forward to the end of the semester so that I can enjoy the summer without worrying about papers, quizzes, and math!

This month is an exciting one for us, my friend from Australia is coming to visit, and it will be a ton of fun!

Tuesday, February 2, 2010

My project for the day

And it literally took ALL day. Hope you all like it, it's a little corny.