Friday, August 6, 2010

My Beautiful, Smart, Quirky Daughter

Of the many controversies in the autism community one big one is that of looking for a cure versus full acceptance of the child as is. At one extreme, the folks looking for a cure will try and do anything to rid their child of autism. This could include changing diet, avoiding vaccinations, ridding the child of metals that may have accumulated in the body, pursuing different therapies, in addition to other treatments. At the other extreme, parents and people who have autism don't pursue anything because they feel they are absolutely perfect as they are. The thought of "curing" outright offends them because there is nothing wrong to be cured from.

I probably fall somewhere in the center of the continuum--maybe leaning a little closer to the cure side! Generally, I love my daughter's quirks that make her so unique. Because her brain is wired a little differently, she has a lot of amazing gifts that go along with the autism (amazing memory for some things, intelligence, thirst for knowledge, for example). However, I want her to learn how to manage her emotions so she wouldn't tantrum over little things, such as having to leave school at the end of the day. I want her to learn how to get friends and play with them. To care about her friends if they are sad or hurt. She doesn't have to be the most popular girl at school, but I don't want her to be the kid that everyone is mean to and makes fun of. I want her to possibly get married some day (if she ever meets someone who is good enough for her, of course) and have children.

I'm not willing to try every thing under the sun in order to do this, however. She's done amazingly well with behavior therapy, so that's what we're sticking with!

Here's to my beautiful, smart, quirky daughter!

26 comments:

  1. My husband and I have had this conversation many times. Caleb is Caleb. I would like to make things a little easier for him (anxiety, temper, transitions) but I don't want to change who he is. He is an awesome kid with a focus and thought process that blows my mind.

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  2. This is a constant tug of war in my household. I go back and forth. Of course, I want nothing more than for her to be a successful, functioning member of society, but I'm not willing to buy into every snake oil out there that claims to make that happen. But I have nothing but respect for parents who pursue responsible biomed protocol (which we have done some of) and also am not a fan of the "neurodiversity" crowd of high-functioning Aspies who claim to speak for their lower-functioning counterparts and think that they should all be left alone. Easy for them to say!

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  3. That is so interesting Cheryl, I never thought of it like that. I can see how you want to embrace what is unique and special about your daughter and yet still find ways to help her overcome other aspects of her autism. It does seem like finding the right balance...great eye opener :)

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  4. It's always a tough balance, especially since so many people are so opinionated and judgemental. And there is so much unknown and so much bad information out there.

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  5. I hope that this is what every parent wants for their children (regardless of where they are on the spectrum or off): that their unique qualities and strengths be maintained while we work to help them learn to work around or overcome their weaknesses.

    I think some parents are so desperate to do this that they veer too far into woo, but I really don't think, despite the way neurodiversity has been twisted by some of those who wish for a "cure," that anyone who supports neurodiversity is for leaving people without the supports, treatments, and accommodations that will allow them to live as full and as satisfying of lives as possible.

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  6. This is coming from a naive standpoint in that I have not tried to raise a child with autism. And totally meant as support.
    With that said, I think the dreams and aspirations, as well as the challenges you have with your daughter are the same (although seriously amplified in some areas) as any parents. We all have to teach our children what life is like and how to cope with it. You just got a much more challenging set of circumstances. It sounds to me like you are raising her in an incredibly balanced way.
    Does that make sense?

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  7. I too fall somewhere in the middle but as my son grows older I tend to lean more towards the acceptance side. I love my son the way he is. Sure we would like to spare him the difficulties and challenges his disorder present. However, he is, by far the most unique person I have ever met. He makes our lives rich and full. I enjoy and love him so much as he is. Why would I want to change that?

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  8. Hi...
    Kinda new to the whole journey, and it is this continuum that I really struggle with. I want "cure" (but not crazy-ass cure... I don't drink the kool aid)... Or maybe I just crave normal. But I also love him, and I wonder if wanting to change him dishonors him. And yet, I cannot stop myself . And so here I am... confused as hell, scared and sad...

    Pia
    http://www.thecrackandthelight.com

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  9. I agree completely. My kids (both on the spectrum) ROCK! And even though I worry about how they'll be impacted by ASD as adults, I don't know if a "cure" is really what I'm looking for. I want help for them certainly, and we do all of the standard treatments etc. I just hope it's enough.

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  10. Very thought provoking. I'm all in favor of aggressively addressing every challenge as it comes up, & I confess that I've secretly harbored the hope that our daughter will progress far enough that for she will, for all intents and purposes, leave the spectrum.
    I liked Pia's rhetorical question regarding whether wanting our children to change somehow dishonors them. Our daughter is the most unique and wonderful kid I've ever known (I might be partial), and I don't think that will ever change even if her eye contact or flexibility improves. At this point, I think of it as wanting her to gain certain skills that won't fundamentally change her, but help her to effectively cope with the world around her.
    I know her autism has been a big part of making her who she is, and because she's so unique and wonderful, I've long since made peace with the diagnosis (except when she tantrums! ;-)

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  11. I have a hard time with Groups. I have my own opinions (that are strong) but I am Pro Parent Choice. Although I may strongly disagree with some approaches, ideas and theories about Autism, I do decisions should be made by the Parents, whether I agree or not. I just hope that there is no harm done to any child. A 'Divide and Conquer' approach never works well, and it has not where Autism is concerned.

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  12. It should have read "I do believe decisions"...

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  13. Anonymous:

    I'm not sure what you're saying exactly. Are you saying that the autism community is too fractured? That it's forming too many camps with too much infighting? If that is what you're saying, then it's something I haven't really thought of before. I guess I kinda took the different camps as a given.

    If this is what you're saying, you definitely raise an interesting point!

    I think everyone else raised excellent points as well. And I agree that this is even a broader issue that all parents have to some degree!

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  14. you are truly am amazing mom...

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  15. I am reading these comments and I just hope you sit back take a breath and realize how important you are. For every one comment their may be 20 reading your posts and feeling a little less alone. Bravo.
    I want my solo kid to be a little more like my popular kid - my popular kid to be a little more focused and brilliant like my solo kid.....arghh!

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  16. Hi Cheryl! I love this post! Its so great to see the perspective of Aspergers from a loving mom. I love what you said about trying to find balance when treating and caring for your daughter.
    I've actually been to your blog before. I came to try and vote for you on the 2010 Parent Blogger Awards. I came too late and the voting was closed but I'm glad to see that you won anyway!
    Thanks for stopping by. Great to see you,
    CK

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  17. I think that's a great stance to take --- it's important to look at the "big picture" when making decisions, and while the world may not be fair, it still is the world we live in so it's essential that we try to fit into it - without going nuts!

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  18. I'm right there with you. I love my boys and they are wonderful, but I would like to help them socially as they grow. Over all, I just want them to be happy. We're working on getting them into behavior therapy, and I think that will help a lot.

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  19. Wonderful post. My youngest son is autistic and I too love his quirks and would never want to change him. I do, however, want to do what I can to help him overcome the weaknesses that come with those quirks-from meltdowns to social ability.

    Hugs and laughter to all the parents out there,

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  20. Cheryl, this is such an eye opening post. I never see it this way but I do know some kids with autism who is very sweet and caring. I think as parents you guys are doing great in embracing her natural treats as well as guiding her in finding the balance. Kudos to you!

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  21. kudos to u for approaching a difficult subject.

    I also fall somehwere in the middle. actually i don't really know how I feel. When some people make good points on the cure side I agree and yet when ppl make points that make sense on the let them be side, I agree...so I don't know where i am. But I would never attack anyone no matter what they decide. Its hard enough just dealing with the diagnosis to make judgement calls as to how another parents should deal with it and what they should do. I think also because of my personal experiences i just learned to never judge how others raise their kids.

    In my case, my only fear is one day my son will say, :"and what did you do to help me?" So I feel I must at least try to do something to help in some way...but regardless I accept him as he is.

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  22. I also love my son's quirks. I think it makes him interesting. Ya, in a few years kids may make fun of him but hopefully my son won't care.

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  23. I am right there with you. And I must say I am so glad to have found your blog.

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  24. I love how you're able to present both sides of this argument, find the place where you're comfortable, and accept your daughter's quirkiness without making anyone right or wrong. Especially her.

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  25. I have to lean towards treatment because my son has been so ill. Some people call these comorbids but one has to be careful with that. My son had undiagnosed petite mal seizures for years, which is more like abnormal brain activity than outright convulsions. He had nothing but one word utterances ....until this abnormal electrical acitivity in the brain was treated with biofeedback and seizure medication. At seven years old he became able to ask and answer questions, pretend play -- so here we have so called autism core symtoms that improved by treating a "comorbid". My point, perhaps these are not comorbids at all, but simply how HIS Autism manifests.

    My policy is to keep doing whatever it takes to help him live his highest potential, medical, biomedical, or educational - while accepting him for who he is, autism and all.It is a fine balance. So days I manage it better than others. I'm not going to lie - the eternal toddlerhood aspect really gets me down sometimes.

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  26. This is so timely for me! I am just stumbling across your blog in my search for answers about my almost-7-year-old son. From the time he was an infant, he displayed all the classic symptoms: delayed speech, an obsession with order, sensitivity to sound, an unbelievable ability to recall, even the food allergies. He's in a mainstream school, and his 1st grade teacher raved about him, EXCEPT for his inability to stay focused. Another symptom, yes? I had verbalized my concerns to those around me from the beginning, but I was told I was a worrier, that I read too much, etc. It all came together for me recently when I saw our doctor for our other son's checkup. They now use an Autism Screening sheet that would have opened my eyes years ago. I feel a sense of relief and optimism now that I am getting some answers. My husband, however, became very defensive when I re-stated my concerns. He said I was disappointed in the son I have. That instead of accepting his quirks, I wanted to "mold" him into my "ideal" child. Do I fight this battle? Do I push the issue if my son seems to be thriving? Could I be doing MORE? Do I try to rehabilitate or accept?

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