A Cure? No Thanks, We’ll Pass

by Latina Fatale on 08/25/2011 · 11 comments

in Family, Parenting, Women Who Write

me_and_norrin“Do you hope there will be a cure for autism?”

I get this question from time to time. And there are some well known organizations who raise money and use a portion of funds in search of a “cure.” But when I think of disease, I don’t think autism.

The Autism Society Of America (ASA) defines autism as a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.

So since autism is a disability not a disease, a cure really isn’t needed. It’s not like the doctor who diagnosed The Boy said to us: I’m sorry, your son has autism and he’ll have 6 months to live.

Autism needs intensive therapies, specialized programs, specific methodologies to meet the unique needs of each child and adult. It needs patience. Acceptance. Unconditional love. More patience. Hope. Respect. Compassion. Wait, did I mention patience?

Diseases need to be cured. Autism needs to be understood.

We need to understand that life doesn’t always run on an exact timeline. Not every achievement or milestone needs to happen for every person at the same time. We need to understand that different is not always a bad thing. Different doesn’t need to be feared or cured.

When I think of all of things people with autism have contributed to our society – why would we want to cure that? There is a great kids book called “Different Like Me: My Book of Autism Heroes” by Jennifer Elder. Some of heroes highlighted are: Lewis Carroll, Albert Einstein, Andy Warhol, Sir Isaac Newton and Temple Grandin.

And when I think of The Boy – his dimpled cheeks, his infectious laughter, his sweet disposition, his eagerness and willingness to learn. When I watch him working really hard to complete a task. And when he’s completed it, looking up at me for approval. When I remind him to walk and not run around the apartment, and I see him trying so hard to walk – one foot slowly in front of the other as if he’s mentally telling himself to: walk, walk, walk. Those moments when he points to his favorite book (the one that I just finished reading for the 5th time in a row) and says: Read to me Mommy. Why would I want to cure that?

Those moments when I call his name three, four, five times – asking him to look at me. Those moments when he’s somewhere else. Those moments when he’s running around, back and forth, flapping his arms wildly and I can’t get him to calm down or focus. Those moments when he’s not using his words but mumbling to himself in a jargon that doesn’t make sense – at least not to me. Those moments when we’re in the park and I see “typical” children, the same age as The Boy, swinging on swings, playing catch and riding their bikes and scooters without the assistance of an occupational or physical therapist. Those moments when I watch children making friends and playing without any facilitation. Those moments when it’s late at night, and I’m up thinking about his goals and IEP. I still don’t want to cure The Boy of anything. All I want to do is work harder to understand him.

About the Author:
Lisa Quinones-Fontanez is a secretary by day and MFA Creative Writing CCNY student/blogger by night. Her writing has been featured in BronxMama, Being Latino and Tiki Tiki Blog.

More importantly, Lisa is a mother to a child with autism. Her blog AutismWonderland focuses on her family journey with autism and also provides local resources for children/families with special needs.

In between work, school, blog writing and advocating for her 5 year old son, Lisa is also working on a historical fiction novel (working title) A Thousand Branches. A chapter excerpt (The Last Time of Anything) from A Thousand Branches received Honorable Mention in Glimmertrain’s Family Matters October 2010 competition.

Originally posted on AutismWonderland and cross-posted with permission.

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{ 11 comments… read them below or add one }

Stephanie Rivera August 25, 2011 at 12:32 am

Lisa you did an amazing job with this post! You are 100% correct when you say that autism is not a disease, that it needs to be understood. I have met Norrin and he is not some sick kid that needs to constantly be hooked up to medicines; he’s just like every other kid! He is fun, energetic and very loving and I love him to pieces! Keep on writing Lisa and keep spreading the word! Hopefully more and more people will continue to read and finally begin to understand! Love you!

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Eliana Tardio August 25, 2011 at 2:25 pm

You are my hero! this is such an amazing and great post that deserve to be share with the whole world! I take for my children too.. so much money invested looking for a cure for Down syndrome, they don’t need to be fixed! they are perfect , but we need to cure and open our hearts and minds to be able to take the message that they bring, diversity, compassion, love and acceptance. You are great! I have a blog for my work, I work in the state Early intervention program, I would love to share your post .. even in my newsletter ..let me know if you are interested :)

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Carla August 25, 2011 at 2:31 pm

So perfectly said! It’s something you live with not suffer through. You’re not waiting for some terrible end. I think, from a parent who has not dealt with autism personally, that it is like learning a new kind of normal. Autism is a special kind of gift, a challenging and not remotely easy one, that requires non-autistic individuals to redefine what normal is and not only do they gain a new appreciation for individuals with autism but also for all of mankind. You give families such a gift of hope and a view of what it’s like to live joyously with autism. Thank you!

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Margie Velez August 25, 2011 at 3:00 pm

I can’t imagine what you go through on a daily basis but I have to say you are doing an amazing job keeping all of us educated. So many out there talk about finding a cure when it’s autism awareness that is mostly needed. We all have to look outside the box like you do everyday. Each family needs to find a way to make it work for them, because no child is the same as the next. Thank you for keep us informed!! We are listening and learning.

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Tracy August 25, 2011 at 5:31 pm

You are such an amazing mother and your son is blessed. If only all kids had such patient, understanding and loving parents! Lucky, lucky kid.

I absolutely love Lewis Carroll and Albert Einstein – I had no idea they had autism.

I’m glad I read this today. You explained everything so well. I definitely learned something new.

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Eva Smith August 25, 2011 at 7:24 pm

Thank you for the beautiful heartfelt post and educating us on autism. I now know that the key is understanding not just a cure.

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Patty @ A Day in My NYC August 25, 2011 at 8:01 pm

I am not yet a mom but since I been reading blog written by mom’s it is so interesting to hear the stories of autism. I’m learning from you and I admires how much you do and how much your children succeed. They may learn differently but the learn and thrive. I’ve seen it! You words give me comfort because no one knows what life holds for them so it amazing to learn from amazing mothers like youself.

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Aurelia @ PowerfulLatinas August 25, 2011 at 10:39 pm

What great explanations, but most of all the message: seek first to understand (and then understand better). :) Ironically, isn’t that what all of us want? To be understood? I agree with others, Norrin is a lucky, lucky boy to have you as an amazing mother. Thank you for sharing this wonderful piece with us.

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Sujeiry, 1st Lady of Love August 26, 2011 at 2:37 am

This piece is one of my favorites. It is so touching and loving that I almost cried. Your love for The Boy is palpable. You’re an amazing woman and mother.

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Laurita August 26, 2011 at 3:37 am

Lisa!!! What more can I say? I LOVE LOVE LOVE this. I love it because to people who don’t “get it” it’s scandalous that we should not want “a cure” for certain things. People ask me all the time if I’m “better” after 19 surgeries for spina bifida. I want to slap them in the face. For people with any “disability” (I even hesitate to call it that!), it’s more about “maintenance” and early interventions to help give the person the best quality of life possible. Society should try HARD to grasp that– just like your little boy tries HARD to mentally tell himself to walk. If we lived in a more understanding society, we wouldn’t need all these campaigns and organizations passionately fighting for our most basic rights as human beings. But we don’t, so it’s up to US to do the hard work. I feel you, amiga. Sorry for the lengthy rant, jaja!

((Abrazos))

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dmd August 30, 2011 at 6:03 pm

I’m from a different, but perhaps at times, similar place. My son has ADHD which affects pretty much everything in his life. But my feelings about it are from an entirely different place. I would love love love for a way to resolve/solve his ADHD. Am I ashamed of it? Is he less of a person/less of my child because of it? Is it the end of the world? No, no, and no. But does it make his life harder than I want it to be? YES! Does he have trouble with things we take for granted like school, like friendships, like his ability to manage time and space? Yes, definitely.

There are parents who choose not to medicate. Parents who (have a life situation that permits them to be able to) homeschool. Parents who overlook everything including impulsive rages, inability to write, and their child’s lack of social network. But for me, and my son, medication helps him get through school, make friends, and control some of his impulsivity. But that same medication makes eating unpalatable and sleep often unreachable. So, if I could, would I make all of that go away – the pills, the lack of sleep, the lack of appetite, the difficulty in making friends, the challenges of school, the poor impulse control … all of it? Yes, yes, I would. In a heartbeat.

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