Posts Tagged ‘parents’
Autism Awareness Begins At…
Posted on: March 31, 2011
Home?
Yes, but it needs to really kick some butt at school.
What a week. The next time someone tells me “you’re so lucky your child is verbal,” I may have to say “yes, I’ll remember that next time I’m in the office dealing with yet another punishment for his verbal behavior.”
Folks, high-functioning autism, mild autism, Asperger’s, whatever you want to call it, is no picnic. It’s not a party. Not a cakewalk. Definitely not easy street. De-de-definitely not. (Sorry, the Rainman movie came to mind.) It’s autism, but on a level where they’re given enough independence to get in trouble and where their words can be used against. It’s autism, with its meltdowns, self-injurious behavior, lack of friends and social skills, obsessions, repetitive behaviors, lack of proper communication, sensory processing disorder, and other behavior issues. Just because he speaks and can attend a regular class doesn’t mean the autism is any less ‘real’ than any other severity of autism. He still struggles daily to handle himself and get through the day. He isn’t being controlling to be sneaky or be a brat, but instead, it’s to have his environment be comfortable and the restricted, routine way that makes him most comfortable.
Despite all that, daily, our kids are lost. They fall through the cracks but there’s those with ‘real’ disabilities to deal with. They appear normal, whatever that word means, to those who aren’t educated specifically in the autism spectrum, with focus on the word spectrum. Their ‘normal’ appearance is so misleading that others forget and try to fit them in the same mold as the neurotypical kids are in, and then they complain because the results aren’t what they think they should be.
Try to put a square peg in a round hole, and you may be able to hammer it in, but it will look awkward. It won’t all fit and it will stand out. It may crack and there will be gaps. So just because you get it in there doesn’t mean you were successful in anything other than forcing something that wasn’t supposed to happen. That’s my son, forced into the role of a round peg when he’s definitely a square peg. Is a square peg wrong? Not at all, but if you continually tell someone they need to behave differently than they are, they start to wonder why, and they start to feel badly about themselves. Then you can add self-esteem and confidence issues to the list of pre-existing problems caused by the autism — but these issues are caused by ignorance and not the autism directly.
My goal now is to increase autism awareness so that my son is happy. I want every child with autism to be happy, but I need to start with my own. Awareness month here is a big deal. We are putting out 12 blue light bulbs tonight so our yard is rimmed in blue. I’m dying some of my hair blue tonight — really, a bright dark metallic blue. Awareness ribbons, magnets and pins will be visible and I’ll be continuing to ask random businesses, and strangers, what they’re doing to further awareness, while explaining autism to everyone I can. But I am focusing on high-functioning autism, the children that don’t fit the mold, those that are misunderstood, and those that are falling in the cracks because few know what to do. My goal is to decrease the number of people who don’t know what to do with my son.
My son is my light, my joy, and a blessing to our lives. He is funny, smart, wise beyond his years, and thinks outside of the box. He has a mind for computers and logic that amaze me, and a memory that puts most to shame. His stories are so entertaining, and his lack of a verbal filter means he keeps us on our toes and gets adults thinking outside of the box too. Not a single person who has given him the chance to talk can say that he didn’t impact them. I hear throughout the years, from everyone who has worked with him or talked to him more than a minute or two (which isn’t nearly enough, because if you are uncomfortable around different people, you tend to not give him the chance he deserves, which is seriously your loss) that they love him and they want more time with him. People get him, if they open their minds and allow it to happen. Stop putting kids in a mold, see them for what they are, and accept them. Your lives will improve, you will learn more, and my son will face less discrimination. Win-win.
I’m off to go get the light bulbs ready and see if there’s a blue snack I can send to my son’s class tomorrow. He won’t know the significance of it, but adults might and if nothing else, how many snacks are blue? It’ll be yet another different exposure, and that’s never bad.
Uncluttering We Will Go
Posted on: November 12, 2008
We recently decided we’re going to make our playroom into ds’s bedroom. He’s been sharing his room with his older brother, but it’s time for a change. Ds refuses to sleep in his own bed, and wants to sleep on the futon in the playroom nightly; the playroom is directly outside of our bedroom. If you can’t bring Mohammed to the mountain, bring the mountain to Mohammed, eh?
Ds had a neuro appt this afternoon (seizure free for 9 mths!!) but between last night and after, I spent hours going through the playroom from top to bottom. Literally, top of the cabinets, by the ceiling, to under the futon. Boxes and boxes, piles and piles, tons and tons…okay, so maybe pounds and pounds of stuff was relegated to the garage. Not sure yet if it means a garage sale or a trip to the shelter dropoff. It’s all in good shape — I filled a monster-sized street garbage can with broken things or games with missing pieces. Major work to cull out only the things that ds/dd will play with, or board games that we’ll all play. (And wow, do we have a lot of those, I really need to use them now that they’re dusted off.)
Then, the bedroom. The closet. Argh. I pulled out about eight boxes — shoe boxes, Disneyland hard plastic lunchboxes, other miscellaneous cases — full of dominos, little dragon toys, military ammo for G.I. Joe sets, legos. Sounds great, right? Except they were all mixed together. Just when I’d move the last pile of boxes, move them to the ‘goes on a different shelf’ pile, a marble would fall out of the Hot Wheels box.
Sad thing was that so many of these things were dusty. I realized that ds was hanging onto things, and sorting in his own way (he’s always been a line-up, sort into piles kind of kid) and I needed to complete this before he arrived home from school and saw the travesty I was making of his ‘organization.’ He did yell when he initially saw the playroom, but more out of confusion. He’s very routine-oriented, likes things in the same place, same way, every time. Then he went through the tons of donateable toys and pulled out five things in a heartbeat. Five things he just had to have. And two of them? Dusty as could be. So what did we do? Go through the ‘playhouse,’ a space under the stairs, off the garage, clean it out (got rid of a TON of stuff there, too) and put the five things under there.
Anyway….a couple of hours later and ds has moved on. He’s excited about the idea of a new room, and insisting on his opportunity for privacy. He’s walked past the monster pile in the garage, and now that those five things are put aside, he’s only pulled one thing out…a blow up dragon. It’s right next to toys he’s played with for years, but he wants the dragon.
Things change. Kids grow. (Wahhhhhh.) The time for re-organization comes, but none of it really hits you until your special needs child, the one you’ve hugged and cuddled every opportunity you can, the one you tear up when he has a rough day and laugh hysterically when the word ‘oops’ makes him giggle..none of it really hits you until that sweet little chubby-cheeked (covered in rash) child says “Mom, I’m growing up now.”
So you didn’t see me on the news getting kicked off the plane because my autistic son was disruptive. Score! Kudos to Delta Airlines for being as accommodating as we could wish for. We were able to pre-board without any hassle whatsoever, and let me tell you, it makes all the difference. Other than running out of milk on one part of the trip, there were no issues with Delta at all…even the flights, though changed, left on time. Way beyond my expectations!
How to summarize a two-week trip in one blog post? How about I just list what we did: visit family, fish, swim, go to the beach, mini-golf, visit several Nascar racetracks/shops, attend a beautiful wedding, drive to D.C. and check out all the memorials, spend July 4 at Colonial Williamsburg (complete with celebratory fireworks in the rain), go down in the caverns in VA, eat, eat, and eat some more….including an evening in a ‘fancy’ restaurant, a first for our crew altogether. Ds was unsure what to do with the crystal water goblet, and others around us were unsure what to do with a family of six actually talking at the table next to them, but then a family with a baby came in and we were a thing of the past. In the end, all the activities were fun, we were exhausted, but we fit in every thing we’d planned…success!
Now to the details about ds and the trip. Any break in routine of course means potential for meltdown…and meltdowns did occur. Lots of strange foods, noises, crowds, and the incessant heat/humidity. He ate an actual full sandwich for the first time ever (this means eating the crust) and he sat through a wedding without needing an electronic visual stim aka Gameboy. He drove a go-kart at Nascar Speedpark better than most adults, and he went without eating pancakes for breakfast every day. He got hooked on “Cherry Bubba,” aka any red kool-aid (despite my better judgment, due to the red dye in it) and he slept alone in a room, though he didn’t always realize it. He got so much exercise, he slept in the airplane on the way home! (Maybe it’s because, to his body, it felt like three hours later than it was, but I prefer to think it’s because he was just plain tired out…a first since he was, hmmm, 17-18 months old?) He did refuse to watch the fireworks the last night there, a huge display put on by his uncle, whom he loved, and he did fight with his cousins because he’s not so great at interpreting ‘typical boy play,’ but we look back at the memories, the time, the effort (and the bills) with happiness — a wonderful, relaxing trip without tons of plans and stress, and we are so glad we got beyond the fears and did it. If you’re holding off on a trip because you’re afraid of the ‘what ifs,’ I say go for it!
So, now that I’m back in the groove, I’ll be back posting about daily inane issues and news in the autism community. (That is, if the ants that we returned to stay abated and I actually can stay in the house or if I have to move to the RV until it’s under control.) Sorry for the long break, and hope everyone’s having a good summer.
When I started this blog, I had intentions of covering all aspects of autism, but focusing mainly on sharing news as well as day-to-day things that occur. Lately though, with all the news happening, I’ve gotten caught up. I’ve posted on so much of the hype that I’ve gotten away from my original plan. So, I do promise to get back on task to a more rounded blog about autism…but I do want to talk about the new “Just let him be” campaign that’s supposedly growing in numbers, those who want us to just ‘accept’ our child the way he is, and stop all the treatments. (For more info, see ABCNews.com for this: Autistic and Proud)
What??
That was my first thought — stop all treatments? Stop looking for a cure and accept them for who they are?
I thought about this further, and couldn’t get past the thought that anyone who thinks we haven’t accepted who are children are really doesn’t know what they’re talking about. I think everyone other than those dealing with new diagnoses, those who haven’t had a chance to grasp it all yet, accepts their children. I accept my child’s autism. I accept his differences. I accept his tics, his stims, his rituals, his needs…but that doesn’t mean I’ve given up on thoughts of happiness and functioning as he wants to within society, and I don’t see him being able to do that if he’s on the floor in a tantrum, biting himself, wetting/messing himself, or not understanding a change in routine. For non-verbal kids, I don’t think their parents should have to just ‘leave him be’ when it comes to not ever hearing their child speak. I don’t know, my child’s verbal, but from parents I’ve met, they’d give their right and left arms to hear their child say “I love you” or “I’m happy, Mom.” Who can blame them?
So moving on past ‘acceptance,’ what about finding a cure. Why wouldn’t we want to stop another generation from watching their child bang their head on the floor, line up their toys for hours, or flap their hands so much they can’t pay attention to anything else. Sure, I love and accept my child for his uniqueness, but does that mean that I should be okay with autism being out there, and I shouldn’t want other children to not have to go through this? It’s okay for some people, but why make that decision for others?
Heck yes I want a cure. I don’t believe we’re going to find it in genetics though — maybe partially, because these kids are genetically predisposed to autism, but we need to focus on why these children develop normally, even if they have a few oddities, then suddenly don’t. There’s something in our environment causing this, and the research needs to go there.
I accept my son for who he is. The differences that autism has ’caused’ him in make him unique. I often envy his outlook on life, and I don’t necessarily want to change it. I really wish I didn’t care what others think and would just dance in the aisle if I felt moved. I wish I could be comfy in flame-patterned lounge pants and a purple Pokemon t-shirt if I wanted to…in public. My son can. My son is a very unique individual, and I’m so very proud of him. I also know that until the world accepts his differences, he could be in for a hard time as he gets in higher grades in school. But that’s not his problem, that’s society’s. Autism’s often teased, harassed, bullied and ignored, where other disabilities are accommodated. Still though, if I can help him feel more happy, more safe, more comfortable, then I’m going to do that. If that means biomedical treatment to help heal a funky rash, to stop a stim that leaves him with clown mouth, to help him sit down long enough to eat, to eat more than 7 items, to help him be, ahem, regular and not have a hurting tummy, then I’ll do that. In my opinion, to allow your child to suffer just so we can be prideful is wrong.
My child will be old enough to make his own decisions eventually. Until then, I’m going to do any and everything I can to make him healthy and happy. If autism takes away from that, I’ll be first in line to fix it as he deserves nothing less than healthiness and happiness. I can do that while still being proud of the unique little guy that he is.
Autism Watch: 2007 