This isn't along the lines of accepting that your child is a girl rather than a boy (or vice versa) or learning to deal with the fact that he'll be very tall. Autism is a no-fun thing, guys. Sure, there can be advantages to the affected person such as being able to tune out a lot of social stimuli when working on a problem. There is no cloud without a silver lining. But I, for one, would prefer the cloud not be there.
The debate over "cure" or "acceptance," I think, is really a matter of semantics. No matter how hard we try, we never really have achieved either. In our heart of hearts, we know our autistic child will always be different and we also know we will never fully accept autism in the same manner in which we would accept a child's "boyness" or "girlness."
Kristina Chew, in her Autism Vox blog, writes this about the acceptance/cure debate:
Perhaps, over time, a parent learns to perform a kind of dance between encouraging a child to learn and knowing when to let a child be as he or she is? Perhaps, whatever gets said about “cure” and “recovery,” at some point you think, difference is difference. I’d rather Charlie not screech in public, but I am glad that he’s got that desire and drive to express himself.
http://www.autismvox.com/hope-starts-with-acceptance
She writes that she had gotten to this point after intensive ABA therapy with Charlie to the tune of *40 hours a week.* Have to interject a twinge of jealous feeling here. She has one child and can intensively pour everything into him. She KNOWS she's done everything possible and this is the way it is. Is "acceptance" easier then? I wonder. Then again, her child has far fewer "opportunities to work out conflict" with siblings LOL! Only think what he's missing. ;]
Yes, this was yet another "acceptance verus cure" post all about autism. It's my blog. Maybe I'll post about it again tomorrow. And the next day. And the next day...
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I have written about this topic in terms of my daughter's FASD. I think the problem is putting seeking a cure on one end of a spectrum and acceptance on the other end. Because as we parent our kids we need to do both. Cure and acceptance are not polar opposites.
ReplyDeletePerhaps it is different for me. I know that alcohol killed some of my daughter's developing brain cells. I know that there are structural and cellular differences in her brain. And, I have accepted that they are part of the way she was created. Since I believe in a Creator, that has implications for my moving toward acceptance.
There was a time I had a written nursing management plan with all of my daughter's "problems" listed and a plan for how to address each problem. The goal at the top of the problem, "Marissa will... whatever." To some extent, I still have a plan. It simply is not okay to let Marissa reach adulthood while still raging when she is overstimulated. Marissa did not thrive under this plan. She constantly received the message at home and at school that she was unacceptable.
So I changed the plan. I have way, way more accomodations in the interventions than I had in the past and not treatments. We have given up on special diets because, when she leaves my house, she is going to eat what she likes. We don't go to the psychologist anymore because I don't think I should treat a developmental brain disorder as a mental illness. I do give my child meds. I fought that for years. Her brain just functions better on them than off them. I do allow my child to self-select her environments. She behaves in environments that are controlled and she knows what is expected of her; she naturally gravitates to these environments. Marissa wants to go to technical college when she graduates... so Marissa and I attend classes in the community and then talk about how adult learners behave in a classroom.
Today we are going to a class called, "The Culture of Poverty." I haven't bathed yet. I am quite sure adult learners aren't supposed to look like they just got out of bed! I should be doing something besides blogging ~
I think what she means is that parents have to come to terms with the diagnosis at some point. Some autistic children develop really well, while others will remain severely affected for the rest of their lives. If this is the case of your child, how long will you be seeking for your child to become "normal" or "close to normal"? At some point you can't hope for a cure any longer. But you can hope for peace and acceptance. My son is at an age where I still don't know if he'll be able to lead an independent life, if he'll develop full speech. So I'm kind of on a limbo. I'm hoping for the best, but preparing for the worst. In any case I hope we can all be happy with the outcome.
ReplyDeleteHi ya! How's it going? I love this post so much. I really really think it touches on so many points. It is so much easier when you have ONE child who is Autistic but if you have more than one child with Autism and typical siblings, man oh man it's a different picture entirely.
ReplyDeleteWoodjie is so darn adorable! All your kids are adorable!