Light It Up Pink for Autism with Kim Stagliano
"Its Not A Perfect World But I'll Take It!" Free from Skyhorse Publishing For Autism Action Month

It's Heeeeeeeeeeere.

Groundhogday
Aaaaaaaaaaaaaaaand it's 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim

###

Aaaaand it's 2015.

Managing Editor's Note: We ran this post from Cathy Jameson last April -  2013.   I wish it were out of date.  366 days later and it still works...

By Cathy Jameson

Let me embrace thee, sour adversity, for wise men say it is the wisest course.
--Shakespeare

It’s that time of year.  We’ve flipped a calendar page to a new month:  the month of April.  The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode.  From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me.  While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me. 

April used to be my favorite month.  It ushers in springtime weather and the awakening of new life.  It also happens to be my birthday month.  Now, when I think about April and how blue it makes me feel, it’s the worst time of year.   Long before the month starts, I’m done with April and the autism ‘awareness’ and ‘celebration’ it brings. 

Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it.  Embrace autism.  Really?  I’ll embrace a lot of things, but I will never embrace autism.  Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person.  I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him).  HE is who I love.  HE is my inspiration.  HE is the reason I work so hard.  But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day?  Never. 

Autism, celebrate it.  Autism, advertise it.  Autism, wear it.  Autism, it’s not so bad.  Embrace it. 

I don’t think so.  

How about we embrace the 1 in 50 (and quickly rising) autism rate?  Embrace the need to open more people’s eyes.  Why?  Because they obviously missed the memo on the autism epidemic and how it happened.  Before it hits, let’s embrace what’s coming next.  Embrace the fact that young adults on the spectrum will soon be spilling out of their school-age services and into their communities with limited or no supports.  Those are cold, hard facts that are worthy of being embraced and what needs to be acted upon now. 

To embrace a life-long, debilitating disorder that can hamper growth, delay development and reduce independence is downright wrong.  People try to play down Ronan’s diagnosis and the devastation he and so many others suffer.  Making light of a grave situation that is affecting him and a generation of children is the opposite of what our society needs to have happen.  

When I see whimsical messages and posts about how wonderful autism is, it hurts. It hurts to know that Ronan’s story hasn’t made a difference.  It hurts to know that someone took my son’s plight and wants to make a buck off of it.  It hurts to realize that Ronan’s struggles aren’t understood, and it’s ridiculous to think that they should be celebrated.  How on earth could I ever embrace that?

To the people who are cashing in our kids, shame on you.  To the people and the groups I know who are working tirelessly to help reduce our fears, our worries and our struggles so that we can have the positive energy we need to care for our children affected by autism, thank you. Thank you for your dedication and commitment to our families.  Your words, your efforts and your actions make a difference.

Today marks the first day of a month that I no longer love.  It’s dreadful because it wasn’t too long ago that the month of April gave me great joy.  Despite the sadness I feel because of the greed of others, nothing will stop me from showering Ronan with all the love and the respect he so deserves.  I embrace him.  I embrace the chance to be his Mom.  I embrace being able to give him the tools, the time and the hope he needs for the future.  Ronan is my life and my joy.  No one can take away the awesomeness that he brings to my life.  No one.

Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

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christine kincaid

Aimee Doyle; thank you so very much .

A word regarding my mom:

Brilliant lady; excelled at anything she wanted to do. During her FIRST PhD program; in Immunology and AFTER submitting what was deemed a “brilliant” thesis:

Was sitting in a class full of med students (the people who we call “Doctor” today) in the early 1990’s, listening to a lecture regarding Immunizations. The professor told the class … “You will see injury from vaccinations. No matter how severe the injury; death or brain damage, you are NEVER to acknowledge that it was caused by the vaccine.”

My mother, who was also a grandmother at the time, raised her hand & confronted the professor: “What if that were YOUR child?”

It cost her PhD diploma; they refused to give her; a straight A student who authored a “brilliant” thesis … her PhD because she challenged the ethics of the U.S. Immunization policy.

She said “I’ll just get another PhD” & she did; within a few years she received her PhD in Biochem from a different university.

If more med students, 27 years ago, had been like my mom; we wouldn’t have the vaccine injured children we have today.

Aimee Doyle

Christine - I am sorry about the loss of your mother. I hope that things get better with your husband and son. Autism can be so hard on families in so many ways - and the financial impact - with its emotional ripples - is rarely discussed. An area where we really need awareness.

I'll be thinking of you.

Jeannette Bishop

Thank you. If we have to have some level of a "Groundhog Day"-like existence, it's at least a boost to have it come with Cathy's motivating words.

But maybe some things are different this year:
https://www.youtube.com/watch?v=be_7wvPX29U

Cathy Jameson

Ellen,

Our family loves to support National Autism Association and Generation Rescue. There are other groups that give directly back to families like mine, so I'd encourage you to check out: Talk About Curing Autism (TACA), The Canary Party, and Autism Research Institute, TEAM TMR, and Autism One. We also have a donate button here on Age of Autism. You can also support us if you do any shopping on Amazon (we're listed as Autism Age -
https://smile.amazon.com/ch/47-1831987) Every little bit helps, and every little bit is very much appreciated.

Thank you, Cathy

christine kincaid

I’ve developed an intense dislike for Spring Break, which in our district usually occurs in March but now that you mention it; April sucks too.

Spring Break … is a “rub my nose in it” reminder of what Luke & I have given up thanks to Autism:

It’s a reminder of what 10 non-employable years in a row; “means”.

I send Luke’s twin sisters off on their team trips & competitions ( which I spend months gutting my laughable “budget” for) to various fun locations knowing that Luke & I will be stuck at home, eating plain boiled pasta for days in a row.

I endure the daily screaming lecture from Luke’s dad for gutting my budget.

Despite the agreement 10 yrs ago that he would work two jobs so that I could be Luke’s primary caregiver; I have yet to see my name added to any account, card or policy.

I don’t know about anyone else … but for me; I don’t need the male role model in the house to take me down a notch in full view of a 5’11, 200lb autistic 13 year old boy. Super helpful (not).

This year, I lost my beautiful mother on the 1st day of spring break. From rushing to see her lying dead with my father sobbing at her bedside to struggling with all the arrangements; Luke has had to endure it all. Spring break went from bad to worse.

Ironically, my mom was the only person who understood what spring break “means” for me:

A lot of … butt wiping. Repairing the baseboards that my kid rips off walls with his bare hands when he’s bored. A lot of noise; between his shrieking, grunts & screams & his dad hollering “WHEN ARE YOU GOING TO LEARN HOW TO STAY ON BUDGET!” an inch away from my face … it’s just noisy.

The well-intentioned cheerful questions: "How was your spring break?" (just when I acheive full-fledged & blissful denial).

And now; here’s April. I missed Luke’s annual waiver meeting to help my dad make arrangements for my mom’s funeral so now he might have a lapse in services. School starts tomorrow but I have a visitation on Monday & the funeral on Tuesday.

I just want to take my kid to the ocean for a few days. He wants a “studio vacation” so he can visit an animation studio & produce an episode of “Boo-Luke’s Adventures”, the show he has already animated every screen shot of complete with scripts.

I just need … to breathe.

I’ve participated every year in all the walks & fundraisers & it never occurred to me: “Where is this going?”

It hasn’t found it’s way to Luke; that’s for sure.


Ellen

What group can I donate to? I agree with your comments. We shouldn't embrace it, we should erase it!!!!

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