From Cure to Celebration

Yesterday Richard wrote a wonderful post on his blog entitled ~ Happy Father’s Day.  In it he talks about being a father and how having children has changed him and his life.  He ends the post with, “To all our children, thanks for making our lives matter!”  I love that.  That’s it, right there.  That’s the feeling I’ve had, but couldn’t find the words to so beautifully or succinctly express.

Richard also wrote, “…We got a beautiful boy, Nic. Eighteen months later, we got a beautiful girl, Emma. One of each, as they say. We got “one of each” in another way, too. One autistic, one not.”  I read that and smiled, because it’s so true.  We have been fortunate enough to have a child of each sex AND of two different neurologies!  Three years ago I would not have been able to write any of this, I was still in the – Autism is tragic – mindset.  But happily all of that has changed. Some people object to those of us who have chosen to celebrate our child’s neurology.  They say we are sugar-coating what is real and difficult and makes it seem less serious than it is.  I disagree with that thinking.  I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.

I do not, for a second, believe that my daughter has an easy time or that she will not face all kinds of things a non Autistic peer would not have to deal with, but I do not need to increase her challenges by not accepting her, believing in her and celebrating her, exactly as she is, now, in this moment.  Adding my expectations, despair and ongoing critique and comparison of her, to the very real issues she must cope with on a daily basis does not make her life easier.  And I really want to make her life easier, not harder.  I’d like to be the person who champions her, makes the bumps she will inevitably face a bit less bumpy and help her navigate some of the twists and turns of life, by giving her acceptance and unconditional love for every aspect of her being.

I keep thinking about all our children who have trouble speaking, how when they are able to communicate in some way, either through typing or speaking, we non autistics are far more likely to listen and assume intelligence than not.  I keep wondering what would happen if all our time, money and energy were spent on finding ways to help our children communicate through typing and other AAC devises, instead of on cures; would we see a shift in society’s perception regarding autism?  Or would all those people dismiss their words because they are written and not spoken?  Amy Sequenzia writes about this ‘here‘.

You see, we were one of those families who pursued the bio-med route.  For years I tried all kinds of things, thinking we could cure.  As long as I believed in a cure, everything else took a backseat.  What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies.  The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy.

Nic & Em

 

39 responses to “From Cure to Celebration

  1. Ariane, this message is so vital:

    “What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies.”

    I would like to plaster this far and wide–for all children. It is especially important for children on the spectrum, due to the terrible stigma they face. The more people who accept their children as autistic, as individuals, the better their self esteem will be. So many are damaged by feeling not good enough, or not quite right. Supportive parents are strength for life.

  2. Change your girl to my boy and this could be my situation. I liked the idea of taking the “one of each” a step farther. One boy…one girl…one autistic…one NT.
    I do have to add; not everyone that does biomedical is looking for a cure. I am past the “cure” mindset with Nathan. He still does ABA (NOT the sit at the table work for a cookie like a dog ABA…we have a great play based, developmentally appropriate ABA therapy provider…I know we are on the right track when Nathan’s 3 year old NT sister spends all her time with Nathan’s “helpers” (as we call them) because they do so much fun stuff.). He goes to speech (again a developmental approach…she doesn’t care if he verbalizes or not) and OT (again lots of sensory stuff, not fine motor or handwriting). My mindset with all of this is that Nathan’s body works differently, and his neurology is different, so we need to teach him differently. These are ways to help him reach his potential, not to cure him. We are also using a biomedical approach. But again not to cure him. To help his body work the best that it can work. We are only doing things “might help, won’t hurt”. We took a chance with the GFCF diet, and did get a nice increase in eye contact, verbalization, awareness, and attention. We ran a lot of blood work and found out that he is low in some vitamins and minerals, and high in others. He is taking supplements to bring these back into line. I realize that many people who try biomedical are looking for the cure, but not all are. I also realize that many of the DAN doctors out there are “quacks” for lack of a better word. Again, not all are. Nathan’s DAN doctor (who is a licensed MD and worked in an ER before taking an interest in autism) was referred to us by his pediatrician. Bottom line, I think that it is not so much what you are doing as it is the thought process behind it. If you are looking to cure, you are probably going down the wrong road. But if you are using therapies (whatever they may be) to help the child reach his/her potential while accepting him/her for who he/she is, then I think you can have good results. I am not trying to change Nathan’s neurology or who he is. I am trying to help him be the best Nathan that he can be.

    • I really like this Beth. Thank you!

    • Hi Beth,
      I followed the bio-med route seeking a “cure”, that is very, very different from someone trying to alleviate their child’s physical suffering with the help of a physician.
      So wonderful you’ve found what works. It’s always wonderful to hear!

      • Right. Dietary changes that help a child probably do so for dietary or metabolic reasons. They don’t address autism.

        Like I’m hypoglycemic. When my blood sugar’s okay, I’m more alert, focused, and physically comfortable. But it’s not the autism that changed…it’s my brain getting the fuel it needs. I also seem to do better with a *lot* of fat in my diet. I don’t know if that’s a neurological thing or a metabolic thing or some kind of intersection between the two; I just know I feel better and think better when I give my body what it seems to demand. I’m still as autistic as I ever was.

        A child who is gluten/casein-sensitive will feel better on a GFCF diet, whether they’re autistic or not.

        A car runs better when it has gasoline, oil, wiper fluid, etc. But a Chevy is still a Chevy and a Toyota is still a Toyota.

        • Totally agree. I know a lot of people think that GFCF (or whatever) is “fixing” autism. It is really just improving the co-morbids that go along with autism.

      • I know the biomed stuff does not work for every kiddo. I just feel that it is getting a bad rap lately. For some reason several blogs I follow have been mentioning it…some in less than a positive way (not that your mention of it was negative, but it was kind of tied to the negativity of “cure”), so I always like to take the opportunity to point out that it can be a positive thing if done with the right mindset.

        • Beth, I completely understand. The “mindset” going in is huge and makes all the difference. When I put Em on a radical and extremely strict version of GFCF she basically stopped eating. It was horrible and the trauma she experienced as a result is one she still talks about to this day. Was it worth it? Absolutely not and there was no noticeable change in attention or anything else. But I personally know people and children who have benefitted enormously, not just Autistic!

          • Oh, poor Em. Hopefully she understands that you were doing what you felt was in her best interest at that time, and now you know that you made a mistake. Just curious, what did she find traumatic about it (if you don’t mind sharing)? Nathan was only 2 when we started so he didn’t really know what was going on. He had only been eating “real” food for such a short amount of time that I don’t think the shift was too hard for him. I also try really hard to make our dinners GFCF, so that we all eat the same thing. (HIs sister doesn’t even like to eat regular pizza, because she is used to the GFCF one.) Same thing at lunch, he eats a sandwich with GFCF bread, and we eat one with regular bread. I am trying to work out how I am going to handle it when he asks for something that he “can’t” have. So far he has been accepting of “this one is not for you, but you can have…”, but as he gets more and more aware and social he is going to start noticing that other kids are eating stuff that he can’t eat. So far it hasn’t been bad, but he will start school in the fall, and he won’t be able to have the same snack as the other kids all the time. I suppose it is really no different than any other kid that has dietary restrictions for one reason or another, but I still feel bad about it.

        • Well, a “biomedical” approach to autism is not the same thing as a biomedical approach to other biomedical problems. And I think part of the bad rap “biomed” for autism gets is there’s this idea woven through it that when you’re autistic, you magically don’t have OTHER unrelated medical conditions. Everything is autism, and so anything that helps, helped push back the autism–and that isn’t the case. When you’re autistic, you can still have other medical conditions and normal childhood health stuff. Like stomach problems. Lots of kids have them. But when a kid is autistic, what should be considered appropriate attention to other issues becomes treating autism. And everything isn’t autism. Everything that affects a child’s functioning isn’t autism.

          I highly suggest going to the Facebook page for the organization Easter Seals, and reading some of the debate in the comments between parents and autistic adults over Easter Seals’ retraction of “epidemic” language from its autism literature. So many of the parents cannot get over this idea that real autism means all this co-morbid stuff, and the co-morbid stuff is why their children need a cure for autism.

          No.

          Even to look at a lot of the serious research being done, not quacky stuff, by real scientists and pharmaceutical developers, into possible drug treatments? It isn’t good. So many of them actually have no idea what autism really is and isn’t. Like one of the most recent new drugs that failed clinical trials, as reported in the New York Times…they had this drug in trials, to treat social withdrawal, for both autism and Fragile X. Well, social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences. They didn’t really have a clue what they were attacking or how this drug was supposed to do it.

          • Chavisory – this is such an important point. I wrote about an aspect of this in my post about so called “Splinter skills”. How suddenly once we had a diagnosis, everything about my daughter became either a deficit or a “splinter skill”. Her independence was now deemed “anti-social”, her love of music was less about a preference and more about a stereotype, everything becomes reduced with this thinking. Allergies = autism, GI issues = autism, insomnia = autism, bedwetting = autism and while all these things have high incidences in those who are Autistic, a great many people also have these issues. To say these things are ‘autism’ clouds what autism is and isn’t.

  3. Once again you’ve hit the nail on the head (with a bit of help from Richard). Accepting our children as they are is the greatest gift a parent can give their child – no matter the neurology. But I do believe it us even more port ant that we accept out autistic children, as you say, “without amendment” because acceptance at home is the foundation every child needs in order to accept themselves.
    Sometimes when I look at my daughter my heartbreaks a little bit, NOT because she is autistic but because there are people out there who are so ready to discredit her every ability just because of it. Because there are people out there who hate. Because there are people out there missing out on so many amazing people just because of a difference in neurology.
    It’s always nice to come to your blog and read your words and the very many comments below. It gives me strength and hope for this world. It shows me love of diversity and acceptance for all. Thanks for what you do!

  4. Leave it to you to improve on my Father’s Day post. I actually have 3 of each, one autistic, one NT and you!

  5. standing and clapping loudly 🙂 we have done the same! 🙂

  6. Thanks for the link! 😀
    Yes, acknowledging our difficulties but at the same time celebrating our uniqueness makes a difference. I don’t see the challenges of being autistic as worse than the challenges non-autistics face, not when I am with people who get it

  7. My favorite part…” I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.” I think acknowledging the challenges is critical. In fact, many of our celebrations come from recognizing, overcoming, and learning from these challenges. I agree, autism is not tragic. It’s a beautiful thing. Bring on the challenges, bring on the celebrations!!

    • Gosh, that is so true! The celebrations are that much more exquisite on both sides, when she does or says or types something that astounds and when we ‘get it’ without any words, the joy she obviously feels is wonderful too!

  8. Ariane, you are so right about this–the world will be un-accepting and misunderstanding enough. Children need to know that *somebody* at least accepts them as they fundamentally are.

  9. You hit the nail on the head. If I’m honest — and why not? — I often feel the parents who are seeking cures are missing out on so much. Instead of investigating and learning about the underlying neurological etiologies and symptoms — or even accepting autism is a neurological condition with genetic roots and not a disease, infection or injury — they are desperately seeking a cure and, in the process, missing out on a lot.

    I think it’s natural, especially shortly after a diagnosis, to want things to be different. As parents, we realize an autism diagnosis may mean a more difficult life for our children, and just as with any other potential obstacle, our first response is to fix it. The ‘cure’ community is well aware of this vulnerability, this insecurity, and they exploit it by talking about salvation. Jenny McCarthy herself has said of parents who are accepting of their child’s autism that they are laying down and allowing themselves to be victims. (To which I say, no, Ms. McCarthy, you are making your child a victim instead of celebrating him as a victor.)

    I write this full of the realization that, while our son has more obstacles than some children on the spectrum, he has less than others. I’m sure one’s ability to accept an autism diagnosis may be directly proportional to the challenges facing one’s child.

  10. Beautifully and succinctly stated. Accepting a diagnosis, does not mean you don’t continue to light the way for your child, support their interests, get them the help they need for their challenges. It means only that you accept the underlying condition is what it is, and your child will STILL grow and DEVELOP. They just won’t be ‘cured’

    Sidebar: I recently posted on a listserve about a sleep issue we were having with our 4 year old son. I got a myriad of responses about melatonin, allergies, zyrtic, cut berries and almonds from his diet etc.

    Guess what: I talked to him about the night wakings, and we read Go Dog! Go! and spent a lot of time on the page where all the dogs go to bed and slept all night..

    For the last 3 nights, he slept all night and said, “I slept all night mommy. I am proud.”

    I know many kids need help sleeping, and we have also used melatonin to help with sleep during one particularly challenging time after a vacation, but I realized that every mom on the list serve (including myself) first looked to a cure, before looking to my child for the answer. Ha! Lesson learned. Presume Competence.

    • Hey, thanks for commenting. I saw you’d written a similar comment so I deleted it, I hope that’s okay. If you want me to keep both up I can.
      Presume competence, indeed! Very much a work in progress for me!!

  11. Ariane, it is beautiful, so nice to see more parents celebrating their children. You and Richard are awesome parents.

  12. “What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies.”

    Yes, yes, yes!!!

    This is why I love the most-used EFT (meridian tapping) phrase, “Even though (fill in whatever you think needs to be fixed in/about yourself), I deeply and completely accept myself.”

    • Right, this is one of the basic ideas in Buddhism. Acceptance is key, without it we are forever chasing, pursuing, which pushes us into anything but the here and now.

  13. “The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy” Love that! Every person who is different reaches a point where they celebrate that which is different about them instead of running away from it I thankfully reached that point in my late teens.

  14. I love this vision of a world where the time, money, and energy spent on “cures” is instead spent on supporting diverse ways of communication. Now that is an exciting thought!

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