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From Inside the Puzzle: Raising a Child with Autism Blog

Autism is an Unexpected Party

Published January 10, 2012 6:44 AM by Devon Alley
For some reason, I've been reading a lot of negative and depressing posts about autism lately. I'm guessing this may be because Extreme Makeover Home Edition is coming to my hometown, and since Jenny McCarthy is coming to Knoxville as part of that project, the word on the street is that the initiative will be helping a local family that's affected by autism. This has reignited the local branch of the "vaccers vs. anti-vaccers" debate, which has been part of negativity, and has also brought attention to some very real problems that many people in the community are currently dealing with, such as a single mom being evicted from her apartment because of her autistic son's noise disturbances.

Don't get me wrong -- it's good that such a big media event is bringing attention to these issues, and it's good to have these debates and conversations in a public forum. The minister of my church, Rev. Chris Buice, said something in his sermon last Sunday that I feel would be especially applicable to these discussions:
"So much of what passes as dialog in our culture is really about defeating an opponent, humiliating an enemy, destroying an adversary, winning an argument, instead of winning new understanding, winning new awareness, winning new friends."
And there's the meat and potatoes of the issue for me. I live in Knoxville, Tennessee, and I try to be as involved with the local autism community as possible. However, I have very strong ideas about vaccination that I've discussed elsewhere, and I also tend to see autism in a very positive light. Sometimes, this puts me a little at odds with others in my community. I can't help that there's a part of me that becomes extremely unnerved with the "message" of the media and mainstream opinion tends to focus "the tragedy of autism" without giving equal voice to the joys, triumphs, and celebrations that are also a significant part of this diverse and intricate autism spectrum.

So, in the interest of "winning new understanding" and "winning new awareness," I thought I would take a moment to celebrate three things that I am extremely grateful for -- things that are often complained about in public forums, things that are often seen as problematic for autistic people. I have no idea how much of my daughter and I's experiences have to do with keeping a positive, cooperative attitude, and how much it's all just "dumb luck," but I do want to preface that I know my experiences aren't necessarily the norm -- which is precisely why they need to be shared.

I am grateful for my daughter's school system. Ever since we moved to Knoxville, I have really had very few complaints about the Knox County School System, the accommodations they have made for A., and the way they've made sure she's received her services. The few complaints I have had dealt more with the general bureaucracy of education in general than the way this specific school system has handled things (I mean, even the teachers aren't generally happy about the focus on standardized testing.)  We've been in and out of CDC classrooms, in and out of different schools all over the county, from Cedar Bluff to Farragut to Shannondale to Powell, and everywhere we went, teachers and caseworkers have gone above and beyond what I expected of them, caring for, helping, expressing concern for, and otherwise assisting A., as she managed to succeed and flourish in the school system. We've gone through all sorts of teaching styles and all sorts of IEP meetings, and there have been occasional roadblocks and wrinkles to iron out, but I have always felt as if the Knox County School System as a whole had my daughter's back and was ready and willing to advocate for her needs and help her succeed.

I am grateful for the peers my daughter attends school with.
There will always be the few kids who tease, make fun of, and otherwise bully others, so I don't want to suggest that A. never has to deal with this. But what I have seen, first-hand, more than once, is a sort of collective care-taking that seems to happen at A.'s peer-level. This started becoming extremely apparent when she was put in the CDC classroom full-time for behavior reasons. I was afraid she'd be made fun of, or shunned, or kids would think she was weird. Instead, the opposite seemed to happen. Kids would recognize her as being part of "Ms. B.'s class," and would stop and say hello to her. The group of close girlfriends she has right now became direct advocates for her, helping her through difficult times, even trying to change chaotic environments to help calm her down, etc. And while some kids still asked me a lot of questions about her: "Why doesn't she like boys?" "Why does she freak out at the song Thriller?" the majority of her peers seemed to "get it." They befriended her, and, honestly, I think they taught her how to be a friend, herself. They modeled a lot of amazing behaviors for her, and now she's doing those same things for other friends of hers when they have similar issues. It's such an amazing cycle of love and compassion, and so refreshing when there are so many stories of bullying and hate in the news. Of course, this all may change the older she gets, but for now, she has a lot of very nurturing peers. These kids give me real hope for a future of shared understanding and acceptance when it comes to autism.

I am grateful that A. isn't preoccupied with what other people think. I guess this is an autistic trait, right? It's definitely a family trait, and it's definitely a trait that A. has. It does mean we have to coach her on the appropriateness of shouting quotations to Monty Python and the Holy Grail loudly in the middle of McDonald's, yes, but it also means that my daughter can get caught up in the music and just dance like crazy in the middle of a bowling alley or while standing in the pick-up line at school, completely confident and absolutely oblivious to anyone who might be looking at her weird. It means that we can have crazy discussions and quote things to each other while zipping through the grocery store. In some ways, A.'s autism has helped free me from my preoccupation with Wanting To Make Sure I Was Doing Everything Right To Make The World Happy All Of The Time. The more I've come to understand and celebrate autism (and also the more confident I've become as a parent), the less I care about what people think when we go out in public. While there are many public social behaviors that I coach her through (general politeness, not throwing tantrums, trying to help her be aware of her body in proximity to other people, etc.) there are some things that I feel should just generally be accepted. If we're in a big area and want to laugh loudly and dance around, why shouldn't we do that? What does it hurt, to break out in a dance or song at random? I think the world at large would benefit from more random dancing in their lives. I know that I have.

Those are just three things, but there are so many, many more. There is a lot of hardship and heartache in parenting autistics -- and in parenting, in general! -- and I'm sure there will be many examples of these struggles in my ongoing From The Archives series, where I post recovered entries from my old online journal to demonstrate how much progress we've both made over the years. But there is so much joy, so much celebration, so much to be grateful for, and to be happy about. Autism is not a tragedy for every parent. For me, autism has been more like an Unexpected Party -- sure, dishes were broken, plates were cracked, and my life never was the same, but I got to set out on the Greatest Adventure of all. And I wouldn't change that for the world.

...

Yes, that was a blatant Hobbit reference, there, thus cementing my proud geek reputation. :-)

posted by Devon Alley
tags: ,

18 comments

I found, for myself, that snuggling while he is asleep has really helped me create that bond for myself.  It is a time when we are both quiet and relaxed with no yelling or pushing or hitting or anything else.  Just us.

Thank you for this Devon.  I think from all our everyday trials, it is very hard sometimes to sit back and really cherish how precious they are.  

Melissa January 19, 2012 2:47 PM

IMHO you've got the right asenwr!

Latasha Latasha, NcvXZljbC - VXdZWvAmJmtUOgIjTF, IapqIuyZJEppqXCPwvr January 14, 2012 3:32 AM
kQFSTpdB SD

To Marie & George -- thank you so much for reading my article and for sharing your comments! :-)

Devon Alley January 12, 2012 8:51 AM

Sam -- I absolutely respect your position and your perspective, and I apologize if you misunderstood mine. My point is that there are a lot of struggles out there -- absolutely there are. This is not an easy road for any of us, and I recognize that my situation is a lot more positive and fortunate than others. That being said, there is a lot of press and air-time given to the struggles and heartache. I just thought a little press and air-time needed to be given to the joy and celebration, too, since there are different perspectives, experiences, and points of view out here.

And I still see that you celebrate your child in your love for him, in his triumphs, and in the daily nurturing and care you give him. And that's the whole point of what I meant by "celebration." :-)

Thank you for your comments!

Devon Alley January 12, 2012 8:48 AM

Very nice blog, it is nice to see the good things in life.

To Sam, The point of this post is that there is MORE then enough negative things and she wanted to post some of the positive. And yes, in EVERY situation there is positive. You can not tell me you don't have moment of great joy with and for your son, remember those and cherish them. You do have a tough time, with heart break because you want so much for your son. But do NOT let that run your life and your relationship with your son.

Take a moment, think of the good things and keep building on them. I wish you luck and joy with your son and the strength to handle all he will throw at you.

George January 12, 2012 5:26 AM
Orlando FL

Well put! I wouldn't change it either. Thanks.

Marie Delgado January 11, 2012 11:50 PM
Alameda CA

You wrote a beautiful article- but I must respectfully disagree. There is absolutely nothing about the autism I know which makes it a "party." Your daughter is a gift, and her joyous personality must be a blessing to you. The autism in my home IS tragic. My soon to be 6-year-old is happy, but he'd be a whole lot happier if he could tell us when he was hurting and we could get him appropriate medicine days sooner, or if he could let us know what kind of ice cream he wants for his birthday, or how his day was at school. He is a blessing, as a child, and we are fortunate that he is happy, and despite having to live trapped within himself, he has only positive behaviors. However he has a serious disorder. While there are things that he CAN do, like giving a high-five, there are many things that he can't do, and should be able to, like using the toilet consistently, look me in the eye, or even randomly dance, for that matter, and that is a disability. I love him with every fiber of my soul- and I am grateful for the joy he is able to find in his life, but I am not grateful that he has to struggle so hard to get by, and it is not a party. Absolutely every child is a gift- but I refuse to celebrate the very thing that is preventing my child from going to kindergarten, playing with his siblings and building relationships. I wouldn't call it a party if my child had laryngitis and couldn't speak or go to school, and I will never call autism a party. I honestly do respect your perspective- so please at least consider respecting mine. Autism IS a spectrum and at my end, there's no party.

Sam January 11, 2012 11:44 PM

Nina -- I'm so glad you did, too, and also that you found me on Facebook! :-)

Devon Alley January 11, 2012 9:14 PM

so glad I stumbled upon your blog!

thank you

Nina Schmidt January 11, 2012 7:34 PM
Fond du Lac WI

Brenda & Heidi -- we should make a club of random dancers! There definitely needs to be more random dancing in the world. :-)

Bobbi -- your son sounds delightful, and I'm totally with you on dropping the "disorder" terminology.

Laurie -- thank *you* for commenting! The great thing about autism as a spectrum is that each one of us has our own unique set of things to be grateful for.

Marjie -- I am absolutely with you on dodging a lot of the teenage girl behavior. I think the thing I'm most grateful for in that arena is that A. has absolutely *no* interest in boys at all -- well, at least not yet! :-)

Deograine -- she is also blessed to have a grandmother who recognizes and celebrates it, too, just for the record. :-)

Devon Alley January 11, 2012 6:50 AM

She is a fantastic random dancer, just wish I was blessed with that kind of natural rhythym, then we both would have been random tandem dancing.  As I told you when you picked her up from her visit with me.  Ais totally inspires me.  She challenges me to poke my head outside that comfort zone.  She is an enormous blessing, and is equally blessed to have a mother that recognizes it.

Deograine January 10, 2012 8:41 PM

Wow - loved this.  As R gets into her teens I am seeing more and more how I have dodged a lot of the teenage girl behavior - mean girls, fashion, etc.  Thanks for sharing, you have hit the nail on the head.  We can choose to be victims because we have autistic children or we can figure out how to make the world work for them.

Marjie S January 10, 2012 5:31 PM
Centennial CO

I can relate to your article and I loved it.  I can totally relate to 2 of the 3 "grateful"s you mention.  Unfortunately, my son of 16 1/2 is one that would rather be by himself, in his own little world.   We are making progress though.  Thanks for sharing.

Laurie January 10, 2012 5:18 PM
Dandridge TN

Loved this! Finally someone who believes the same as me!! My son is not a tragedy, he is a complete joy who only struggles when he is not accepted. he is talented, bright and extremely funny. he is 10 soon to be 11 and was diagnosed Autistic Spectrum condition (sorry not a "disorder" in our home) and ADHD..... we do not need a "cure" but more research into the causes, yes and more understanding and Acceptance, Definitely!!

Bobbi January 10, 2012 2:29 PM
London

Oh, another autistic person who randomly dances!  Yay!  And So nice to hear someone being accepting of harmless fun---WHY does that have to be so rare?

Heidi Evans January 10, 2012 2:20 PM
UT

I LOVE random dancing.  And I'm so happy I have a reason to do it.  And random singing, random clapping, random laughing ...

Brenda MamaBeGood January 10, 2012 1:16 PM

Shannon -- I think *you* just said it best: "every child is a blessing." It's so very true, and something we should all keep in mind. Thank you for sharing and commenting and writing being a part of this!

Devon Alley January 10, 2012 8:46 AM

Love the article and it came at such a great time for me. I posted on twitter the other day that Autism can be a blessing and some guy freaked out on me about it, telling me its a "disorder." Hi, I have a four year old with Autism. I am well aware what it is. I blocked the idiot and told him that if he doesn't realize that every child is a blessing no matter what the affliction something is wrong. I hope he somehow stumbles across your blog which explains what I meant so much better than I could. Thank you.

Shannon Johnson January 10, 2012 7:41 AM
Douglassville

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