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Every Day is Autism Awareness Day

  
  
  

autism awarenessI am crying. There was a time when it seemed I did that a lot. Too much, perhaps. More than I knew I even could. Those were the early days. That was when my pediatrician first confirmed my armchair diagnosis that my son, Will, then just shy of two years old, had autism.

Today I’m crying because as I sit here, trying to write something uplifting and inspiring for Autism Awareness Month, what I’m really thinking about is the fact that, in my home, it’s Autism Awareness Day every single day, and it has been for over five years now. I’m crying because I wish I could just think about autism once a year and write a check and wear a ribbon and do a walk and feel good about that and then get back to my daily life. Because that’s how it’s supposed to be. Because that’s what people do. Because this wasn’t supposed to happen to my son. But it did.

And because it did happen, because Will does have autism, it truly is Autism Awareness Day every day of our lives. We go to the market, and I end up talking about autism with the checker when she tries to ask Will, who is pre-verbal, a question and gets no response. We go to the doctor, and when a child tries to engage Will and feels rejected by his lack of interest, I explain autism to an 8-year-old. We go out to lunch, and when a stranger makes a snide comment about my unruly child who did nothing but make some odd noises, I am a walking, talking, breathing, Public Service Announcement for autism.

So today, I sit here writing about autism, and I’m crying because I could write all day and all night and all week and all month and still not be done talking about autism. I probably never will be. So, while I accept that I am a different parent than the one I set out to be; while I accept that I am a special-needs mom; while I celebrate every milestone and accomplishment and baby step; while I love and enjoy and adore my smart, funny, amazing kid; while I willingly became a public advocate for children with disabilities; while I freely give my time to educate, train, and inform educators, therapists, and other professionals; and while I regularly spend my time supporting and informing parents of newly diagnosed children and helping them access the resources they need, I simply refuse to say that this is the life I wanted. I refuse to tie this up with a bow and say I’m remotely grateful for Will’s autism because it somehow brought me to my destiny in life or any such thing.

willHere’s the truth: No one wants any child to have autism. No one wants to be a special-needs parent, no matter how well s/he may end up doing it. This month, as we take time to shine a spotlight on autism, you may read a great many wonderful, inspiring stories about kids with autism who grew up to become physicists and teachers, who were non-communicative until they were given iPads, who never spoke a word until suddenly, one day, they did. This is not that article. Those are important awareness pieces, and they’re articles I truly hope you’ll take the time to read. But this one? This one is mine, and my son isn’t grown yet. His story isn’t finished. So all I can tell you is how it looks from the trenches:

  • Will is seven and he eats jars of Stage 3 Gerber Baby Food every day.

  • Will doesn’t speak functionally, but he does say a few understandable words now and then.

  • Will has an exceptionally high pain threshold and an inability to articulate his needs or respond to unusual demands. This means we end up in the ER at least once a year. Sometimes twice.

  • Will has no concept of money or durability, so when he broke a window and an iPod in the same week, he had no idea why I was so upset.

  • Our state legislature, insurance company, and school district all point their fingers at one another when asked to provide services, therapies, or communication devices for my son, which ultimately means our family pays for those things out of pocket.

  • If we don’t do something about this epidemic soon, fund early intervention, and really make a change, we’ll have an entire generation of adults who are unable to live independently.

dangers of autismI love my son the same way I love my daughter – with that consuming, visceral, whole body love that only parents know. I am tough and strong, informed and educated, determined and positive about Will’s autism. But I do still cry some days, because I never wanted this for my child, my family, or myself. That’s what life is like when it’s always Autism Awareness Day.  

Wondering what to engrave on a medical ID for a child with autism? Will’s bracelet looks like this:

Will Cohen – Autism
GFCF – nonvrbl
Mom (phone number)
Dad (phone number)
Dr (phone number)

                    _______________________________________________________

Tara Cohen is a professional writer, Internet marketing consultant, autism advocate, and mom of two. She and her kids all wear Lauren’s Hope medical ID bracelets, and she recently joined our marketing team. You can reach Tara at tara@laurenshope.com or check her out online at http://about.me/taracohen.


Comments

This is a very moving, touching story; it brought tears to my eyes. It is harder to diagnose another form of Autism called Ausberger's and it is hard for parents to accept this diagnosis, much less want treatment for their child, ss they are in denial that their child has it and needs treatment. I know this from a very personal level.
Posted @ Wednesday, April 18, 2012 12:04 PM by Priscilla Danielson
Thank you for this heartfelt article. At our house it is Asperger's awarness day everyday. My son Will wasn't diagnosed until he was 14 despite my best efforts to communicate his differences to various doctors. As the previous comment mentioned, it is hard to diagnose. Some days it is overwhelming and I cry also. I think I am like a steam cooker that has to release a little water pressure in order to be stable. :) My 3 kids have Asperger's, type I diabetes, and ODD/ADHD issues. It's a roller coaster ride at our house. I agree that we must continue to be strong, educated, and informted and we must find an early treatment/intervention for our children.
Posted @ Wednesday, April 18, 2012 12:51 PM by Dianne W.
Hi ladies, 
 
Thank you so much for your thoughtful responses. I'm always so grateful to hear from other parents of children with special needs and others who are invested in this special community we live in, however far apart we may be.  
 
Dianne, I think the roller coaster ride analogy is very apt. You're up, down, upside down! all in a given day, sometimes a given hour, especially when there are multiple children involved. But it's only through reaching out to one another and by sharing our stories with the world in an honest way that we can effect change.  
 
I believe that in order for people to be motivated to join walks, raise funds, vote for insurance reform, elect officials who properly fund early intervention and education, and otherwise GET INVOLVED, people have to know that there's a NEED. And if the only things we hear about autism and other special needs are the great stories of children growing into their full potentials as adults, no one sees the NEED. No one sees the daily struggles or particular joys of raising a child with special needs. People need to know what it is to have a kid with autism or asperger's or ADHD or diabetes or epilepsy or any other challenge so they can understand how great the need is and then join together to create change. To support these kids and their families. To make this the LAST generation with autism. 
 
Thanks for sharing your thoughts! Hats off to you both!!
Posted @ Wednesday, April 18, 2012 1:47 PM by Tara Cohen
Tara, you are such a gifted writer. Your honesty is refreshing and profound.
Posted @ Wednesday, April 18, 2012 2:47 PM by Daniel
A friend pointed out to me that not everyone would understand the abbreviations on Will's bracelet, which, by the way, you can see in the photo above; that's Will's custom-altered Knight Rider from Lauren's Hope. 
<a>http://bit.ly/HSU4D9<a>  
 
"nonvrbl" = "nonverbal": This is useful information for an EMT who might otherwise wonder if a child had suffered an injury that was causing him or her not to verbally communicate. 
 
"GFCF" - "Gluten-Free, Casein-Free": Many children with autism and some other special needs show marked improvement when gluten and casein are removed from their diets. Therefore, if they were being assisted by emergency personnel, it's essential that the first responders or hospital staff not provide food that doesn't adhere to the diet or the child may exhibit signs of a reaction (typically behavioral rather than anaphylactic), further compounding the emergency situation.  
 
Lastly, the reason we list our doctor's phone number after our own is that children with special needs have just that: special needs. And no one besides their parents knows those needs quite as well as the child's pediatrician, who will have all of their medical records AND will also have alternate emergency contact information on file.  
 
My daughter and I also wear Lauren's Hope bracelets. My daughter's has her I.C.E. (In Case of Emergency) info (on her Purple Lipgloss <a>http://bit.ly/HSVpJZ<a> bracelet) followed by "Brother Has Autism," and mine (I have a few!) has my medical information followed by, "Son Has Autism, nonvrbl, GFCF." In this way, if my children are lost without me, or if we're in an accident and I am unable to advocate for them, whomever is reached first carries the most imperative information right there on his or her wrist. 
 
What do you have on your child's bracelet?
Posted @ Wednesday, April 18, 2012 4:15 PM by Tara Cohen
"I simply refuse to say that this is the life I wanted. I refuse to tie this up with a bow and say I’m remotely grateful for Will’s [Jakob's] autism because it somehow brought me to my destiny in life or any such thing." 
 
EXACTLY.
Posted @ Thursday, April 19, 2012 5:11 PM by Christa
Thank you, Dan. Thank you, Christa. I so truly appreciate your comments.
Posted @ Friday, April 20, 2012 9:08 AM by Tara Cohen
Thank you for sharing Will's story! My son has special needs too (speech delayed, some sensory issues and multiple food allergies) and it is always helpful to hear stories from other special-needs parents. He looks like such a sweetheart in that picture!
Posted @ Tuesday, April 24, 2012 7:47 PM by Dahlia
Thank you, Dahlia! I took that picture of Will at Pixar Place at Disney in Orlando. They are incredibly special-needs friendly! If you're ever traveling to a Disney park with a child with special needs, stop by Guest Services when you first arrive. They are wonderful, full of great ideas, and even have special maps that show all the locations of handicap access entrances, "family" bathrooms, etc! We even got a quiet, private meeting with Buzz and Woody! Will's favorites! It was one of the best days of his life. :)  
 
Another fun tip: Check out our food allergies board on Pinterest for a great link about taking kids with food allergies to Disney!  
 
Alright, bear with me. I'm getting fancy and trying to do a link! Pinterest!
Posted @ Thursday, April 26, 2012 10:40 AM by Tara Cohen
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