Stand By Me

Author’s note: I know, I know my other background was way cute but it took awhile to load and was sorta….busy.


I’ve been trying to make my blog somewhat witty, all the time “me,” and mostly, interesting to read. But when it’s 4:30 in the morning and I have a headache, it might just be ranting.

I think that was my idea of fair warning.

I can’t stop thinking of this woman I spoke with the other day, you know the one from my last post who wanted her son to hang with “normal” kids? Well, that was when the conversation started to get really interesting.

Disclaimer: names have been changed to protect the innocent. Or, not so innocent.

We’ll call the mom Susan and her son Billy for the sake of the story, OK?

I do a ton of work with Autism Speaks, mostly for the Walk Now for Autism. So, I was making phone calls to previous team members and trying to bring them back into the fold for this year. (I felt I needed to explain why I was even calling random people I don’t know) So I call Susan and she proceeds to vent a lot of stuff to me, and that’s fine. But then she goes into the whole story about how Billy is on the road to recovery and almost off the spectrum. Wow, that’s fabulous news! Then she makes the whole “normal” comment and and this point I’m trying to get off the phone asap.

Then the conversation turned. Again. I’m explaining to Susan that Autism Speaks does a lot of local work, that we bring resources in to communities, host family fun “Autism Safe” events, etc etc blah blah blah. And then she starts.

She starts to tell me that SHE doesn’t NEED that kind of support. Because, you know, Billy is almost recovered and all. “I don’t really want to hang out with other mothers whose children have moderate to severe autism, I can’t relate to that anymore.”

But wait!

“I feel like if I take Billy to these events where there are other children like this, I’m somehow rubbing it in their mother’s faces, making them feel worse about their situation because Billy is doing SO WELL. I know many families who do twice as much work as what we do with Billy and they are getting nowhere. I think I would actually feel bad, flaunting Billy around them.”

Insert stunned silence here.

“Thank you so very much for your time, I certainly respect your opinion and will take you off of our call list.”

OMFG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m going to tell you a dirty little secret ~ Luke is almost recovered too. In fact, I’ve had a few professionals tell me that they don’t think he has autism (another post for sure). Granted, that’s really easy to assess in a 15 minute window, (ha ha ha) but mama knows better. TRUST me, mama knows better. It ain’t over. It’s far from over! But I do realize that I am TRULY one of the lucky ones. Luke does VERY well. He’s verbal, he’s potty trained, and he’s pretty darn social. He doesn’t stim, he doesn’t spin wheels all day, he doesn’t bang his head against a wall. But he also doesn’t eat. And he doesn’t like transition. And he doesn’t answer questions very well. And he doesn’t “converse” like a 5 year old should. Etc etc etc. But at the end of the day, I know I am one of the lucky ones.

But it wasn’t always that way.

At 18 months old my son wouldn’t look at me. Did you hear me? My son would not look at me. Or his dad, or his brother….. eye contact people, it’s about the most basic form of communication. He wouldn’t do it.

He couldn’t pull a toy behind him. Did you year me? My son. Could not. Pull a toy. Behind him. For the record, I never would have thought this was a “testing point” or something he needed to be doing and we didn’t OWN any pull toys for him to be practicing on ~ however, he lacked the cognitive skill to pick up the string and know what to do with it.

For TWO. FULL. YEARS. I could not, WOULD NOT leave the house with Luke. REALLY. No grocery shopping, no trips to target, trying to avoid at all costs any and all outings that Luke had to attend. I mean really re-arranging my whole life so that Luke didn’t have to leave the house.

Really, I could go on for hours with this.

My point is this. I work tirelessly to raise awareness about autism. Really, I do. The work I do with Autism Speaks is a full time job. I founded a support group in my town. I write this blog. I make puzzle piece t-shirts and shoes and jewelry and note cards. I can’t stop. I cannot, WILL NOT rest until I know I have done everything in my power to spread the word, share, listen, hopefully throw in a laugh, and just….. be there.

Because what Susan doesn’t realize is that even though SHE doesn’t need those other mothers, they need her.

Duh.

Comments

  1. CJ, we REALLY need to meet. And I mean REALLY!!! Oh, and THANK YOU!

    ReplyDelete
  2. The first time I came to your house I NEVER would have known that Luke had autism except that either you or Myra told me. He looked me in the eye even if just for a second. He smiled at me. He jumped around. I think I even got a Hello. He was hesitant but UMMMM that's what 5 year olds do when someone new comes to the house, isn't it??

    In my humble opinion that other woman is CRAZY!!! I think she lives in this fantasy world that things are going to be fine while you live in reality appreciating and celebrating the awesome, miraculous milestones that most of us take fore granted while knowing that there is still a long road to travel.

    I'm sorry you had to have a phone call like that. And I really hope that this comment doesn't sound stupid!!! :O)

    ReplyDelete
  3. Tammy I think you are brilliant! CJ- I turned off word verification (I didn't even know I had it on) because I never want you to stop commenting on my blog!

    ReplyDelete
  4. That woman's logic is bass-ackwards.

    I mean, if her child was a cancer survivor, would she and her child NOT attend cancer-awareness/fundraising events? How can she not realize that her son's "cure" (is that the right word, here?) would give other people hope rather than instilling in them ill will or "jealousy" towards her? This isn't junior high school. How lame. What an average conformist.

    ps - I like the new blog look!

    ReplyDelete
  5. You are absolutely right April!!! And I need you to continue to do the blog...
    Really I NEED it.

    ReplyDelete

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