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Special Needs
Sagenhaft
member
What are you doing for Autism Awareness Day?
Sagenhaft
member
Hey ladies,
I mostly lurk on here. I'm a teacher, and you're all full of wonderful ideas that I sometimes borrow to help in my classroom. 
So, I've heard of a lot of really original and interesting ideas for fund raising for Autism Awareness. Anyone partaking? I'm doing a 5k and working a "social/carnival" the local Autism center is running.
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Re: What are you doing for Autism Awareness Day?
My DD1 is newly diagnosed. I looked at doing a 5K or a walk in April, but I'm just not sure we're quite "there" yet. Maybe next year. We probably won't be doing anything the day of except dealing with autism as usual.
Right now we're doing our treatment research, and a lot of explaining autism to family members, most of whom have little to no experience with it. As far as I'm concerned, that's our contribution to autism awareness for now!
I saw the "Closer to Home" ad from Autism Speaks for the first time the other night and although I think it's a great ad, I kind of hope that at some point it doesn't feel like a sucker punch to watch it.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
This. Exactly. Last year we had just received our education diagnosis and one of our well-intentioned friends immediately organized a team for walk for autism at a local mall. It was way too soon. The whole thing was terrifying. All I could think about was whether my kid would present like some of the kids I saw there. I'm much further along now and have a better support network. This year is my "coming out" so to speak- I'm running a marathon for an autism organization, but not in April.
This seems to be a recurring theme. People who are well-intentioned but just don't understand the implications of a dx. I think it is partly because people on the spectrum don't "look" any different. A have a sister in high school with a high-functioning ASD and people are always surprised when they find out that she is on the spectrum, but that's because they don't see everything that goes on for her and how even little things can be a challenge.
Speaking of not looking any different, I was at the Haughland center (SP?) the other day getting info on the carnival/social, and I saw someone with a t-shirt that said "THIS IS WHAT A RETARD LOOKS LIKE." At first I was really shocked because I consider "retard" a 4-letter word, but I guess it was his way of embracing a slur and making people think twice about the meaning of the word. Very brave of him, I thought.
Etsy shop
Although I grasp what you're saying (that high-functioning autistic individuals can be hard to identify) - it's not the case with the more severe cases of Autism. My step-son, for example, deals with a very profound case of Autism and quite frequently is subjected to stares and glares from others that don't really grasp what Autism.
@auntie: Honestly, I'm not sure how to answer your question. I can point you to the service I'm supporting, if you'd like and you can make a decision for yourself. Perhaps their use of the term cognitive disabilities is being used incorrectly? I'll admit that I'm not necessarily up to speed on all the lingo surrounding my step-son's diagnosis...maybe I even misquoted them.
I can tell you that the provider we support opens their doors to children with a wide range of special needs, with the intention of giving their families a much needed break. Although Justice (my step-son) has yet to attend a single session (he's in the last phases of the intake process) - they're pretty confident they can handle his needs. And...between Justice's Autism, OCD, and behavior issues alone - he is definitely much more than just another "low IQ" kid.
If you want more details, I'll be happy to provide them - like I said, it may be possible that I misquoted them, or their use of the term "cognitive disabilities" should be re-evaluated.
In the interest of setting things right, I just want to go on record as mis-quoting the original intent. I visited the website, and they don't use that term - they actually say they provide services for individuals with intellectual disabilities and their families. I don't know where I picked up the other term - a lot of the lingo is still foreign (obviously!) to me. I apologize if I caused any confusion!
Here's what the website does say about their services:
"...provides respite for children with intellectual disabilities and their families in the Greater Washington, DC area. We serve boys and girls, ages six through seventeen, with intellectual disabilities without regard to race, religion, or ethnicity. Our mission is to be a safe haven to which parents can entrust their children, allowing the parents a time of rest..."
Honestly, you're not the only one fighting the fight. I never said that you weren't deserving of the services any respite care provided (I apologize if that's the way any of my posts came across). Much like you, we have no one to help us either - and the few folks that have volunteered in the past have quickly turned around and ran away once they see what DS is really like.
Honestly, I'm supportive of this program not because they say they can handle DS (I really believe their services are more aimed at higher functioning children, and once they see what DS's needs and behaviors are will refuse to work with him) but because I see them as trying to fill a much needed void in our community. Even if my son can't attend or participate, at least I can take a little bit of comfort knowing that they're trying to make a difference with other families out there. No, it may not be fair that I can't have a break too, but maybe by supporting these efforts someone will develop a plan that will be able to cater to my DS's needs.
Then again, we've only had custody of DS for 3 years...maybe I'm just overly hopeful.
Nothing out of the ordinary.
The first year of our dx we went to the ASD fair in Pasadena, as they had tons of booths with all kinds of resources (everything from lawyers, to various therapies...just all kinds of info). But, I still went inside a bathroom at one point and broke down. Couldn't handle all that.
Since then we lay low and try not think of it as anything other than just another day.