Autism Watch: 2007

Posts Tagged ‘organization

Over the years, I’ve noticed how the autism community doesn’t always work together to help itself. It’s only my opinion — I’m just one of hundreds of thousands of moms with an opinion — but I can’t help but think there are probably a lot of people out there who would agree.

When my son was first diagnosed, I immediately joined several autism communities, online and off. Some I stayed with, some I didn’t; some were helpful, some were depressing; some were inclusive, others were cliques. In other words, just like the rest of the world, these groups represented the bad and the good parts of society and families. I took it with a grain of salt, and learned quickly that simply having a disabled child didn’t unite us as much as I thought it would.

We all come from different walks of life, and different perspectives. Some of us are drowning in autism research, others have moved beyond that. Neither is wrong, they are just different stages of dealing with having an autistic child. Some of us work outside the home, others are stay-at-home moms. Some of us have other children, some have other special-needs children, some of us have an only child. Some are married, some are single. Some are fully following biomedical treatments, and others follow whatever their doctors say. Some vaccinate, others selectively vaccinate, others don’t vaccinate at all. The group is diverse, and as a result of that, a huge pool of invaluable knowledge.

Now if only we could work together to use all that knowledge.

Instead, I see us judging each other. (I know, I know, I’ve written about it before, but as Autism Awareness Month comes up, with April 1st being Light It Up Blue day, via Autism Speaks, and April 2 being International Autism Awareness Day, I’m seeing more and more commentary coming up that just doesn’t seem in keeping with the ‘let’s help each other, we all have a kid with autism’ credo that people like to tell you they follow…but don’t always do.) Maybe I’m doing it too just by writing about it, but if we keep sweeping it under the rug, it will never go away.

I’m not a follower of any particular autism group. All of them have their downfalls, and some are worse than others. All of them also have their advantages and good points, even if they never touch the majority of those affected by autism. While I don’t fully agree with any of them, I’m a big believer in ‘any autism awareness is better than none.’ If it takes lighting my business storefront up with blue to get people to learn about autism, or to get people who know what blue means to think about autism, I’m going to do it. In fact, I’m going to dye some hair blue for the month — talk about getting attention, it’ll stand out a lot more than the puzzle piece keychain or vaccine t-shirt I wear the rest of the year.

Years ago, I needed some serious help in regards to an autism-related situation. The main group I’d been involved in basically put their hands up and wished me luck. Since then, I’ve seen them give money/services to others in the same situation while others, like me, get by with referrals from strangers online. Help isn’t readily available, but is given to those they choose, which seems more like a popularity contest or a ‘how biomedical orpro-vaccine are you? -based decision. I was twice refused inclusion in an article about autistic children because we weren’t biomedical ‘enough.’ To me, that a child that is improving with just a couple of biomedical treatments should be shouted to the world; shouldn’t we be telling people you don’t have to buy HBOT machines or mortgage your house again just to see some help? Instead, we have to be whole-hog or no one knows who we are. What a disservice to those with autism and to the message that autism can be improved.

I’ve talked to quite a few moms (and dads) the last couple of years who have gone radio silent — they disappear from lists, conversations, and support group meetings. When I inquire how they are, I hear that they’re just tired of the whole deal. Tired of the same few families being chosen to represent everyone else. Tired of the judgment they get for not being GFCF, or for letting their child get a vaccination. They’re tired of hearing what they’re doing wrong or being treated as though they’re stupid for letting their child take a prescription medication. Tired of being ignored or of not being part of the ‘in crowd’ because of a decision they’ve made that isn’t the party line. Some of these people desperately still need the support, and others were wonderful, giving members of our community who have much to offer by way of information and support. As a result of the negatives, we lose these people, and the opportunities they bring with them, because we can’t respect others’ opinions, feelings and choices. And to take it a step further, some people do more damage by trying to make their point, showing the world our lack of unity in a common cause, and time is wasted proving someone else ‘wrong’ or taking time/energy away from the positive that both sides could be doing.

I’m really hoping we can go into Autism Awareness Month together, and just be glad for the fact we have an awareness month. I personally tire of it not being as important/popular as other months. I know it’s not a fatal illness, per se, though the wandering children or those with seizures, their parents will say it is a fatal illness and they’d be correct. With the sheer numbers of those of us affected, it should be everywhere. So I’m going to do my part. If putting blue light bulbs up all over my yard gets people asking me why, then I’ll do it. Our neighbors know we have a reason, so they’ll ask. They see orange and black at Halloween, red and green at Christmas, so I’m glad to use a different color or it won’t get attention. My hair’s black, so I have to dye it an extreme color to get it noticed – blue works! Maybe I could get spray though and do puzzle pieces…. ๐Ÿ˜‰

Be kind to one another. If someone doesn’t agree with you, it’s okay to disagree — just like I disagreed with my friend who told me that because her daughters were fine after shots must mean that shots are fine. But disagree respectfully. Remember the other people may have reasons for doing what they do, reasons you aren’t privy to, shouldn’t be privy to, or simply won’t understand because you don’t live in their house. And sometimes, sadly, they don’t want to understand, but it’s not your call. Assume nothing — and don’t judge. People learn a lot more from each other when information is presented politely, gently, and respectfully, not as though you’re a naughty child who just can’t stop licking an icy flagpole.

 

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.”


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