Posted by: Autism Speaks | October 15, 2009

Why I Walk: As a Reminder to Keep Fighting for My Son

0600709 086As a mom of a child who has autism spectrum disorder, I find myself in that bizarre “in between world.”  
 
PDD-NOS is not quite as difficult as my friend who has a son the same age who is completely non-verbal, nor am I as fortunate as my co-worker whose son with Asperger’s Syndrome scored 1600 on his SAT’s.
 
It is hard to find confidants in this “in between world.”  You don’t want to seem like a complainer or pitiful.
 
Walk Now for Autism Speaks helps us to feel surrounded by our peers. The Walks also reminds us how far we have come with each year.
 
On Walk days, I am reminded that I can’t stop fighting for my son. 
 
Because sometimes even we, the tireless parents, need a reminder that for every step we take, we make progress for our children.  And maybe ourselves.

By Kristen Darling
Westchester-Fairfield Walk Now for Autism Speaks

Nine Walk Now for Autism Speaks events took place the weekend of October 10-11 – Baltimore, Carolinas, Central New Jersey, Cleveland, Columbus, Greater Austin, Kansas City, Southeast Michigan and St. Louis.

Would you like to share with our community why you walk? Please send 300 words or fewer and a photo to us at editors@autismspeaks.org.

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Responses

  1. Great!!! Testimony…

  2. Dera Kristin, I can truly sympathize with you because my son is 12 years old and also diagnosed with PDD-NOS. I totally agree with you that our lives can becometiresome at times but when I see the progress my son has achieve I will not stop advocating for. You stay strong !!!

  3. Dear Kristin,
    I do feel for you & empathize! It’s looks from people who think your child is just acting like a brat when you know that he just doesn’t understand-It’s the feeling like simple requests are such a project to get accomplished at times! It’s the constant question of WHY are you crying? that he just can’t answer! My youngest son who just turned 4 this month is set to be evaluated at Children’s Hospital on Nov. 30th (In my gut & heart I know that he will receive the same diagnosis)-don’t know if it’s the mom in me or the teacher in me that just knows this-but you do offfer me some inspiration that I can get through this difficult situation, stay strong, and make a difference!

  4. Thank you for giving voice to the tireless fight for ourselves and our children. You will continue to see progress as we band together to understand this perplexing condition.

  5. As I sit here with tears streaming I start to realize how your story took me from a lazy Sunday morning to weeping like a baby. I walked for my 6 year old son with the diagnosis of PDD-NOS. I reflect on the roller coaster of watching my 9 month old smile and bounce in his johnny jumper to my 2 year old that no one wanted to be around. Then to my 3 year old that gave me a quite a blow to the face in a tantrum and then my 4 year old crouched underneath my chair at the center as they told me (in slow motion, I’m sure) that he had had autism, more specifically PDD-NOS. I walk for him because although we are so grateful that he doesn’t have seizures or we don’t have the threat of institutions, I am concerned about that nasty word that is ever present – regression. I have actually gotten upset before when someone has said that they would have never guessed him to be on the spectrum. I can’t describe the feeling it gave me. Today I am proud. I am proud that after 2 years of intense home and outpatient therapy that my child appears to not have a disability on the surface. What a blessing it will be in many social settings. However, I will never stop worrying about him. I will never stop trying to teach him new ways to be a part of this world. Thank you for putting your feelings out there. It is what so many of us feel but aren’t sure if it is right or wrong. For me, it sparked a moment that I hope doesn’t burn out soon. Thank you.

  6. Thanks for this. Living in the “in between world” is tough for all of us. You are not alone! I too get angry when folks say to me “it’s not that bad” in an effort to comfort me. If they could only walk in my shoes for a day. Fighting for our kids is what we all know how to do best and we will keep doing it!


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