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From Inside the Puzzle: Raising a Child with Autism Blog

One Step Back, Two Steps Forward

Published October 27, 2010 11:18 PM by Devon Alley
Sometimes, you have to take one step back in order to take two steps forward.

At A.'s long-anticipated and much-needed IEP Meeting this past Friday, the team decided that A.'s behavior issues needed intense monitoring and guidance, the sort of attention that could really only come from a small, contained environment where a teacher would have the energy and resources available to tackle multiple meltdowns with positive redirection and sensory assistance.

The news is bittersweet. After all, A. began this journey completely socially withdrawn and practically nonverbal, and I've been delighted by her intelligence and relative adaptability, so fiercely proud of her progress through the years and her ability to "hold her own" in the mainstream classroom. Upon first meeting A., few people suspected she was autistic or struggled with developmental delays. She was capable of working at grade level, of interacting with her peers, and of mastering basic social skills to help her navigate daily school routines. I can't help but partially feel that there is something heartbreaking about her removal from the regular classroom; I feel as if I have failed as a parent, mentor, teacher, and advocate. There are moments when I try to understand exactly where I went wrong -- should I have been working more diligently on building particular skills? Should I have better prepared her for the challenges of classroom experiences? What exactly did I do that caused my sweet-tempered, compliant child to become a raging, screaming ball of tantrum so intense that the regular classroom is completely ill-equipped to handle her?

On the other hand, while I understand that my ultimate goal is for A. to be able to happily function in mainstream society, I've also been closely watching her for a year, now -- watching as she became increasingly frustrated with the complexity of social relationships as she and her peers grew older, watching as she lost all confidence in her strengths and abilities, watching as every single day became a struggle for understanding abstract academic concepts, watching as she battled with tremendous sensory triggers, watching as she grew to despise school so much that she'd rather take a trip to visit the doctor (an activity she loathes) if it meant she could escape school for just a few hours. School had become an absolute miserable experience for her, and it was an activity that inspired ongoing issues of anxiety and depression.

I do want my daughter to be successful, to learn how to adapt and live in this world, to eventually become self-sufficient and capable of caring for her own needs -- perhaps even to become one of those amazing autistic individuals who manages to harness the strengths of her unique skill-sets and to use them in pursuing and succeeding in a fulfilling career. Perhaps I have too soft a heart, but more than this, I want my daughter to be happy -- to take pleasure in life, to take joy in the activities she completes, to take pride in her accomplishments. I want every day to be an adventure for her; not a battle. And while I know that life is never perfect, and that she will always have challenges to work through and difficulties to overcome, I am not interested in watching her completely suffer through every single moment of her life that Thomas and I are not available to smooth out the rough edges and help her back to her feet.

Coping skills are learned behaviors -- ones I'll admit I'm personally abysmal at understanding and implementing in my own life, much less in modeling those behaviors for someone else. They are also skills that the school system has been rather slow to implement over A.'s academic history, and for good reason -- she always managed herself so well in the classroom, it was difficult to imagine she was having any trouble with them at all. As adolescence, greater self-awareness, and increased complexity have encroached on A.'s little universe, she is completely clueless about how to appropriately respond to disappointment, how to deal with the intense emotions she often feels. A teacher in a mainstream classroom -- even the most gentle, well-meaning ones -- is simply not equipped to constantly teach and model those skills.  Add to the mix a highly sensory-unfriendly classroom environment, a gaggle of children continually invading A.'s personal space, and complex mathematics that deal with beginning abstract algebraic concepts, and it's no wonder that A. is sent out of the classroom most days after screaming and slamming chairs around.

She needs a lot of one-on-one attention and assistance through this difficult time, and even though my inherent inclusionist balks at the concept -- I really feel as if she has a better chance of getting the coaching she needs in a CDC classroom environment.

There are a lot of positive things about the CDC classroom. The entire day is highly-organized and structured by a very clear point system with positive behavior incentives. The class is small, and the children are spread out physically in the classroom so that A. won't feel too crowded. The classroom is sensory-friendly, and there are many areas and activities A. can seek out if she requires a particular sensory stimulus -- the classroom even has "sensory breaks" written into its curriculum. The teachers understand exactly what A. "needs," and have, so far, done a stellar job of delivering on those needs. They also are already pushing her to engage in inclusionary activities whenever possible -- classroom assemblies, for example -- and the eventual goal is to integrate her back into the mainstream environment. Everyone agrees that, academically, A. is more than capable of completing the work and mastering the needed skills. It's the social and behavioral components that need work -- and, honestly, those are the factors I'm much more concerned about, the things I think will give A. the greatest chance at success as she grows up.

So, for the time being, A. will be attending the CDC classroom full-time, working on these important social and behavioral skills. She has prescribed sensory activities at school, now, which I could not be happier about -- I think I've waited her entire life for a school to integrate real sensory activities into her daily routine. She will continue to do academic work at grade-level, and she will continue to attend "special classes" (Art, Music, etc.) with her homeroom class. Slowly but surely, we'll work on encouraging her back into the regular classroom setting. In the meantime, however, I'm hoping she can establish some confidence and valuable social skills under the strong and dedicated guidance of some amazing teachers. And, ultimately, what I hope for -- my most secret, soft wish for my daughter -- is that she will come to a place where she likes school again, and where she likes herself as a student again. I want a week where I pick her up and her day was not full of misery, struggle, and disappointment. I hope that this knowledge and these exercises will inspire her, empower her, and help her understand just how amazing and awesome she truly is.

I suppose that's a tall order for a simple classroom change, huh? What can I say? I'm an optimist.
posted by Devon Alley

2 comments

Thanks, as always, for your comments & support, Stephanie. Both are appreciated more than you know!

Devon Asdell November 4, 2010 9:50 PM

Devon, the love you feel for your daughter shines through so clearly in this post.  It sounds like this has been a difficult year for you and A. so far.  I hope the new classroom environment helps her enjoy her school experience more.  You are truly an amazing person, and A. is blessed to have you as her mom!

Stephanie Manson October 28, 2010 12:05 AM

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