Monday, July 22, 2013

If my child could wake up without special needs


The news about scientists turning off the extra copy of the chromosome behind Down syndrome means that someday, gene therapy could treat the condition in the embryonic stage. Published in the journal Nature, the study has made headlines around the world. It's made an impression on many parents, including me.

Max has cerebral palsy, yet the idea that special needs should be "fixed" or cured is unsettling. At the same time, it's made me wonder what would happen if cerebral palsy were curable. If Max had never been born with it, if it were to go away tomorrow, he would be a completely different child than the one I know and love.

Max is running to the car, excited to go for a drive. I love the way he runs; it's not so much a forward-propelled motion as much of a side-to-side fast waddle, like a penguin on speed. It is so Max.

Max is pointing to a photo he's pulled up on his iPad. 
"Max, do you want a Cars 2 Talking Lightning McQueen for your birthday?" I ask.
"Yeah!" he says, happily.
"And are you having a bowling party?" 
"Yeah!" he says.
"And are you having a chocolate and vanilla ice-cream cake?"
"YEAH!" he says.
I love his "yes." It is so Max. 

Max is holding a French fry in his fingers. This is quite the feat, because it's an oversized soft one and not easy for him to grasp. He's hooked his thumb and pointer finger around it, and he's dunking it in ketchup and carefully bringing it to his mouth. He does it in this slow-mo motion. It is so Max.

Max is giving me a kiss, a big, slurpy open-mouthed kiss typically accompanied by a smile. It is so Max.

Max is about to go downstairs, on his butt. He is capable of doing this upright if he holds the rail and I hold his hand, but he feels more comfortable going down on his rear. I watch him descend, his hair flopping, arms raised for balance whenever he lifts his butt. It is so Max.

It's bedtime, and Max holds his hand to his mouth, fingers straight, and waves it back and forth. It's his sign for water. A bit later, he draws an arm across his body in a Napoleon Bonaparte-like gesture, his sign for "It's cold in here, turn the a.c. down!" The gestures are so Max.

"Ohhmmy!" I hear. It's Max, calling me from the basement where he's been hanging out with Sabrina. "Ohhmmy!" is my favorite word in the whole world. It is so Max.

The cerebral palsy is in Max's movements, mannerisms, gestures, stance, sounds. It does not define him, but it is an integral part of who he is, same as his little sister has her ways. While I sometimes wonder how Max would would move, sound and behave if he didn't have CP, in the end I can never conjure up anything. He wouldn't be the kid I know and adore without the CP.

But then, I think, I'm being selfish. Because the CP creates obstacles for him. I see all the time that the world isn't an easy place to navigate physically or otherwise for a kid with special needs, and it pains me and makes me anxious about Max's future. What I wish is that there were more research dedicated to treatment for the medical issues that accompany disabilities, including the muscle spasticity and even pain some children and adults with cerebral palsy have and the heart problems that can plague those with Down syndrome. I wish, too, that there were more acceptance of people with special needs so that they weren't made to feel so different.

Before I had Max, if you'd asked me whether I would have wanted to avoid the cerebral palsy, I would have unhesitatingly said yes. And now, would I make all of Max's muscles move fluidly if I could? Would I give him full range of speech? Yes, I would, assuming he'd agree. And this is where it gets utterly and completely befuddling. Because what I do not wish is for the boy I love to become some other child.

I will do whatever I can within my powers to pave the road Max walks on and make his path in life easier. But I love this kid, the one I got.

43 comments:

  1. Would I love to walk? Yes I would but not if it meant I couldn't be who I am today because I have CP I am accepting of everyone and I NEVER give up I wouldn't give up being who I am for anything.

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  2. The radio station I listen to in the mornings was discussing this the other day. One of the hosts has a daughter with Down Syndrome, and her stance was the same as yours. If the gene responsible was "turned off" in her daughter, then Lucy (that's her name) wouldn't be the same child. She loves her daughter the way she is, and while she also wishes that things were easier for her - or that they could use this technology to treat the health problems that go along with Down Syndrome - she would never want to change who her daughter is be size of the joy and learning she has brought to her family.
    I, personally, think that while it is fascinating what science has done it is rife with problems. Who will be able to afford this procedure? Will they only consider it for those individuals who are higher functioning? What is a child has multiple diagnoses? I am glad that such a breakthrough has been made; maybe with this new knowledge they can look at how to shut off the gene for cancer, Alzheimer's, and Parkinson's. But I also worry that this will lead more people to look at children with disabilities as being "sick" or "broken", something that needs to be "fixed" - when in reality they are just children who want to be loved.

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    1. Jess....
      "I also worry that this will lead more people to look at children with disabilities as being 'sick' or 'broken', something that needs to be 'fixed' - when in reality they are just children who want to be loved.". Well put!! ;)
      --Raelyn

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    2. Agreed, this raises all of the troubling questions you mention.

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  3. Awesome post! :)

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  4. I've had a post like this in my head many MANY times over.

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  5. Great question! I love your answer; it would be so interesting to know what Max would choose....

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    1. I've wondered, too; he isn't yet up to pondering such matters.

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  6. you are such an amazing mom and your son is so so lucky to have you...

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    1. I am a do-my-best mom, no better than any other moms who have kids with special needs or not! But, thank you.

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  7. Ellen....
    Max is Beautifully Unique. Translation. Being unique is beautiful!! I know you know that!! Sure, he's different. But, aren't we all? Max is also perfect.... He's just the way God made him!! I know you wouldn't have it any other way!! He is so Max!! ;)
    My youngest brother has Down's syndrome. You know what? Life may be a bit more challenging for him at times, but I would not steal his extra chromosome!! Because I love him just the way he is!! Beautifully Unique!! ;)
    And me? Gaining self-acceptance as a learning disabled person is, apparently, my life journey. Like Tony Stark/Iron Man said in "The Avengers". "It's a... terrible privilege.". ;)
    Very good Blog post. ;)
    --Raelyn

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    1. Thanks! And yes, there is only one Max in this world and yes, I can't imagine him another way.

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  8. oh how you have my heart held in these words. I have often thought would i take tilly's smith magenis syndrome away if i could...and you have put my thoughts into words so well! You have this special needs mama in tears my lovely xxx

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  9. Great post! WHile I think it is great to love our kids for who they are, for me, there is no question. I would take away my son's disability in a heartbeat. His low-functioning autism includes major behavioral issues that cause him to hurt himself, his siblings and his parents. He breaks things around the house daily and he doesn't sleep. Meds do nothing and countless hours of behavioral therapy have been fruitless. I realize there are much deeper implications for all this and I certainly don't want to see a homogenous society but right now, in this moment, if someone could turn on/off a gene and make him typical or even less impaired, I would be first in line.

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  10. I love the way you put this, Ellen! I often wonder the same thing about my cerebral palsy. On one hand, I would love to be able to run and jump and keep up with my friends, but I truly believe that I wouldn't be the same person without my CP. It has taught me the importance of perseverance, patience, and acceptance. If giving up my CP meant that I would be afraid of confronting obstacles, impatient, and less accepting of those with differences, I would rather stay just the way I am. (:

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  11. Great post, captures my feelings as well.

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  12. I can certainly relate to this post. I have often asked my husband what he thinks Kyle would be like if he didn't have any of the special needs that he has and although I would love an easier life for him and for us as well, I would not want to change his personality or the way he is in exchange. It's hard to explain but you wrote about my feelings exactly. It very much relates to my next blog post (posting sometime this week) about hope and healing. On one hand, I would love for complete healing for Kyle and on the other hand, I love him just the way he is. Thank you for posting something that is so difficult to write about!

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  13. While I love my daughter and I have an appreciation for the trials of life I didn't have before she was born, she would rather not have to deal with the extra burdens her conditions bring. There are conditions today that can be cured or alleviated to some degree and those parents don't worry about changing the child they love into someone completely different. It can be a little odd talking to a parent whose child has a curable condition when one is on a different track. I don't think improvements will be out right cures, odds are many will be incremental steps where people won't see such stark choices.

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  14. I might be wrong about this, but I think that you would love Max just as much, even if he weren't the same person. I also think that you would -- in a sense -- love him less consciously, less deliberately, if his challenges didn't exist. Parents of atypical children notice all the time how their child is different, but not in the same way that outsiders do. We notice and celebrate the accomplishments more, because every single one is so much more hard won. We learn to love all those things that are unique to our child, in part just because they are unique to our children -- and they are so different that they really stand out in our consciousness. If our children were more typical -- we would love them just as much, we just wouldn't notice it as much, because we wouldn't be feeling any need to justify that love to the world outside. It's so easy to love the ordinary, typical children with their ordinary, typical development that people forget to pay attention. Our fierceness in and on behalf of our children stands out, even to us.

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    1. Well said. I would love any Max just as much, I am sure, but I would ache for the Max I knew.

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  15. I love the way you write about your son Max. The way you describe him just oozes love. He must be such a remarkable boy. I thought this was also such a thought provoking post and brings up so many questions. Although my family is dealing with very different challenges I find myself being to relate to many of your posts. Its hard to ponder these thoughts with people who have typical children. In the early weeks of my sons I absolutely would have wished his condition away. (Who wouldn't?) But as the years pass I have reached such a place of peace and acceptance for my son's condition that to wish away any part of the child I know and love seems wrong.
    My wish like so many other parents of children with special needs is for people (not familiar with the world of special needs) to see children with disabilities as just children and not to try to define them by their disability or difference.
    And I think as more and more parents are becoming activists for their children I hope to see a shift in people's perceptions. It will be interesting to see how this plays out in the next couple years. While special needs activism is obviously increasing so are many new genetic and prenatal tests. It will be interesting to see how on the one hand there is a great movement in our country to teach inclusion and love and acceptance for all but then also at the same time all these new tests are coming out. It's kind of contradictory.

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    1. "But as the years pass I have reached such a place of peace and acceptance for my son's condition that to wish away any part of the child I know and love seems wrong." EXACTLY. And yes, I hope that as more of us speak out about our kids, people will have a better understanding that our children deserve to be treated like any other kids—and that in many ways, they are like other kids.

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  16. Amen. Sammie B is who she is, in part, because of her CP (which I have to clarify is a general, umbrella term for movement disorder in our case, we don't know what "it" is despite years of testing). She is hard-work, grace, perseverance. When she falls over and giggles and says, "well, I just did a spinny tumble!" I adore her, just as I do when she does about a zillion other things (well, most anything she does is adorable).

    And oh-my what a better person I am because she is mine. What a better person my husband is, what a better person our youngest child will grow up to be. The empathy and community and love that Sammie teaches -- just by being her -- is priceless. And, I wouldn't trade any of that. I wouldn't. I am blessed to be her mama, just as she is. . .

    But if I could cut off my legs and give them to her so that she could chase her sister, I would chop them off myself.

    And, for many of this in the special needs boat, particularly this "undiagnosed" boat, figuring out what "it" is and maybe, just maybe fixing "it" would take away some really really scary uncertainty. And I gotta tell you, I'd take that offer. I would. Because it is the "what is its" and the "what if its x" and the worries of her lifespan that can leave me breathless, and knock me to my knees.

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  17. Ellen just reading your title made me cry and moreso because deep down I would love Cooper not to have CP. it's not to say that with CP he is an amazing person and our lives are very different to what may have been but if I am honest I'd change his brain injury in a second. I often look at my Woody and wonder if just maybe Cooper might have moved with such ease like Woody does xxxx

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    1. Bron, I used to compare Max all the time to other kids when he was younger. I think it is a natural thing to do. And I grieved so much in the early years. Both Max's maturity and my own maturity as a special needs parent have brought us both along.

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  18. This whole thing is so hard to wrap my head around. My son is 4 and has Down syndrome. I always say that Ds doesn't define who he is but now that there is a chance it could be taken away, I have to ask myself if that is something I'd want to happen. I just don't know. Owen is who he is and I SO love him just that way. If this gene therapy could take away the hard parts like him not having any verbal words, I might just be all for it. This is tough and I don't think there is any right answer. I also know that it will be quite some time before this is available, so I hope that my Owen will be able to make his own decision about this.

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  19. Thank you for sharing your personal thoughts and feelings about this study, Ellen. I think there are a couple of issues here. One is the love that you feel for Max (and the love that I feel for Nick and all the mothers here feel for their children). That love is central to everything we believe about civil society, about inclusion and about fairness. But what if disabilities such as Down Syndrome or cerebral palsy could be eradicated? Does it necessarily follow that this means our children wouldn't be as beloved if they were able-bodied? Of course we adore our children the way they are, but their disabilities aren't going anywhere. This study talks about children of the future. Will they (the children of the future) be any less loveable if they do not have disabilities? I don't think all disabilities or genetic anomalies are going away any time soon. But if we can reduce the challenges of future generations in some small way, isn't that a good thing? I am definitely someone who would wish away my Nick's cerebral palsy and I know that would too. But that's a different matter.

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    1. Oh, yes, one thing I most definitely wish for is that researchers could focus on reducing the challenges disabilities bring. Sadly, this does not seem to be a focus of funding.

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  20. This is my first time reading your blog and I find your point of view refreshing. I'm an adult with Cerebral Palsy, CP is part of who I am, it has touched every part of my life. Without it I just wouldn't be the same person. I would never want to be cured. I think people with cp and other disabilities add a richness to the world, and that the world would be a less place without them. I hope Cerebral Palsy is around for generations to come.

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    1. Glad to have you here, Nick. I know many other adults with CP who feel the same. It gives me hope for Max, and how he will grow into owning his disability.

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  21. My twin sons are autistic. They are absolutely the joy in my life. They see things so clearly, better than I do at times. The thing that saddens me about their lives is the way they are treated by other children and even adults. They cry because they don't have friends, or the mean things others say or do to them. I wish everyone would take a moment and listen to them and enjoy them. I love them the way they are. They are amazing! My heart aches for the way the world views and treats them. I would love to change that!

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    1. Anon, this saddens me to read. There is no scientific cure that will open up people's minds, so the best we can do as parents is keep spreading the good word about how awesome our children are.

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  22. Ellen, thank you for this post.

    I started reading this blog a couple of months ago, when we were told that my niece is autistic. Like you, I worry about her future, specially about education, because most schools here in Brazil are not well prepared to accept children with special needs. Actually, I believe this is true regarding to all children, because we all have an "special need" in common: to be loved, respected, and recognized as an unique being. I think that the "need" is really in the others, the ones who think they are "normal", the ones who need to learn to see the world in different colors and to feel the joy and happiness of seeing each individual grow in his/her own beautiful way. THEY have an special need: to know our children and learn from them!

    I always felt, from the start, that my little princess is perfect. I will do anything to give her what she needs to fullfill all her potential, to be whoever she wants to be. But I love her just the way it is and yes, and I really don't see the need for her to be any different, unless being like she is it brings her some pain (so far I believe it has not happened yet).

    I was talking to my mother the other day and she said that she was looking at other children playing, and that she wished our little girl would behave like that someday... and I had to say: "Well, really... I don't. It just never crossed my mind." I felt a little guilty about that, like I was being selfish, you know? But now, after reading your post and all the other comments... I don't! :-)

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  23. I loved reading this. I am pregnant with my second child. My first is undiagnosed. I keep thinking of a recent post where you asked a question from a reader about how you decided to have a second child. The truth is that I am not scared that my second child will have the same condition. It frightens me that this baby may not be the same as the one I already know and love.

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  24. I read this from my phone the other day so wasn't able to comment but I really appreciate this post and the comments that have followed from it. It's such a hard question to answer and honestly, I'm not sure what I'd choose. I love my son more than anything exactly how he is. But, if I were able to wave a magic wand over his head and help him to speak, get less anxious, and not have to struggle with simple things like learning how to play, I can't say that I wouldn't do so. But I think you raise a good point in one of the comment replies - would he want me to do so? I don't know.
    I think that like some previous commenters said, that the best we can do is strive for societal acceptance of our children regardless of their abilities. And yeah, I think that the medical world should be focusing instead on alleviating some of the health issues that go along with our kids. My son has horrible horrible allergies. They're scary and uncomfortable and if science could figure that out, I'd be extremely grateful.
    Thanks again for a thought provoking and amazing post.

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  25. If I woke up non-autistic, I would have no friends.

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  26. I think most of us love the kid we got, but I too might opt to take away my daughter's disability. I LOVE how she mispronounces words, how she scrunches up her face when she is thinking, how her eyes dart around. You are correct, these are all the things that make up my daughter and these things are entertaining. They give me stories to tell--and how I can write a book about how she changed my life. But I see how she struggles with some very basic issues in life. I see how she struggles making friends (she has none her own age--most of her friends are adults are age who know our daughter). I think Lindsey would pick to be typical, to have her tremors completely disappear, to be able to reason, to understand quick conversations. But having known my little girl and watched her grow into a young adult, I'd certainly miss her uniqueness, like when she's angry with me and threatens to take me to "Judge Judy or Judge Joe Brown or Judge Mathis" to settle one of our disagreements. She means it, but it cracks me up. :-)

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  27. The only thing I would change about my daughter, who is 16 with CP, she has a trach and is oxygen dependent and vent dependent when she sleeps, is that should could be healthy and not struggle so hard just to breath sometimes, and take away the seizures. The fact is she makes me a better person, mother, wife, sister, daughter, and friend, my other children who are 23,20, and 15 are very different from others their age, more mature, more responsible, now I have a granddaughter who adores Emily and Emily adores her. I know she will never walk or talk, and she will always be basically an infant for life, but I wouldn't change her, because then she wouldn't be my Emily, whose smile melts my heart and who makes me laugh when she laughs, who gives the best eskimo kisses in the world, she is perfect in every way!!!!

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  28. I have 2 children with disabilities; a daughter with a chromosomal abnormality called 18q deletion, and a son with autism.

    If I could wave a magic wand and take away their disabilities, would I?

    In a heartbeat.

    Do I adore them with every cell in my body, even with their challenges?

    Absolutely.

    I'm confident I'd love the people they become without their challenges just as much as I love the people they are with their challenges.

    I'm not judging though. To each her own. Just another perspective.

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  29. If I woke up typical:

    I would not love the flute anymore.
    I would not put as much effort into my schoolwork.
    I would have no empathy.
    I would be very ignorant.
    I would not have any friends.

    No offense to typical people, but this is what I would be like if I woke up normal.

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  30. having a child with severe disabilities i would not change my son. i love his look what i can do attitude he never says i cant only i will and do my sons special needs makes him who he is a fighter a free spirit who will happily live on his own terms i would not change that however i would love for him to be in a normal non speec ed class go to camp and have lots of friends but those are just minor wishes.

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  31. I just had to comment coming from someone who has special needs.I was born with a severe case of Sensory Processing Disorder. People often ask me weird question if I would get rid of it. I would get rid of the feeling of being in flight or fight. To say though I would want to get rid of my disorder I wouldn't because I love the person I became and no longer care about the affect that I'm not the norm. Yes I dream of everything a normal person would want. I would love to go a huge concerts but can't because I can't handle a crowd without getting extremally anxious.

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Thanks for sharing!