Thursday, December 12, 2013


The world of autism is still very new to me. I've only been digesting my daughter's recent diagnosis since the summer. Learning she has Autism Spectrum Disorder helped my husband and I to finally make sense of all of her quirks, quarks, obsessions, anxieties and compulsions.

Recently I've been communicating with Jayde (it feels strange to write her name on here after nearly four years of not writing it) in text messages. During the last meeting at her school, when my husband and I sat down with the resource staff, Jayde's teacher and support teacher, the principal and the occupational therapist, it was suggested to us after we stressed the difficulty we have in encouraging Jayde to open up to us, or just talk to us about how she feels, that I set her up with a text messaging app on her tablet and encourage her to text me.

When Jayde writes, especially about anything bothering her, or something that makes her happy, or anything that is emotionally upsetting, it unlocks a part of her brain she doesn't share verbally.

After weeks of begging her to put a Christmas list together and giving up all hope that my child, now 8, will ever understand what Christmas is all about, if you know anything about Autism, you can imagine how speechless I was when I spotted this book on the wall outside her classroom tonight while we waited for her Christmas concert to start.

I opened it up.

And then I opened it up some more.

I stood there for a few moments just taking it all in, struggling real hard to keep it together. My heart felt like it was going to burst.

It was the first page that got me.

The first line, referring to a My Little Pony character, reads: "I really, really want a glittering wing nightmare moon. I think I deserve this because I try so hard at school for math".


Try so hard.

The words blurred on the page and I realized she understood.

Recovering quickly, I cracked a few jokes to my husband who was with me, about the soft theme dinosaur cover, and how she repeated it. I referenced the movie A Christmas Story, and Ralphie, with his specific description of the model of BB gun he wanted for Christmas, often repeated numerous times throughout the film.

But man, it's the "try so hard". It hit me right in the feels. Right... There.


Stephanie said...

That's amazing. Seriously.

Anonymous said...

Thank you for sharing this Cindy.
I was recently diagnosed with adult autism. Growing up, writing was how I communicated my anger and frustrations, usually left as notes around my room. I don't know how many times my mother begged for me to just talk to her. Thing is... I couldn't, not the way she wanted me to. Jayde will struggle with learning to cope with the you never tell me what you're thinking! complaints from people around her. Having her write or text her feelings should continue to be encouraged. I really liked her wish list and even more so how specific she was. It's very satisfying to be so detail oriented.

Bicky said...

Dang, there's onions in my office this morning.

It's wonderful you got to see this, CJ. Your daughter is aces.

C.J. Smith said...

Re: adult autism
Your comment about derifying satisfaction from details really resonates with me.
Jayde is calmed by routine and has to indulge in her need for order. This presents itself in how she organizes her things and how she needs specific instruction to transition from one task to the next. The more specific we are, the better she responds and cooperates.

C.J. Smith said...

Hi Bicky
It was pretty amazing.

George said...

CJ, reading this brought back memories. I have a 21 year old autistic daughter who was largely uncommunicative until about 5 years ago when she finally learned to write and speak in sentences. At 8 years old she could barely speak and couldn't read or write at all so we had her draw pictures whenever we wanted to hear about her day and of course, her wish list.

Good luck to you with her future. Not to be mean or anything, but it will be hard work and astonishingly gratifying rewards as you've learned. You've found that out already from that post, but there will be far tougher challenges ahead.

My daughter will never in all likelihood live on her own assissted but we are making sure she can function in society and learns basic functions like cooking and cleaning and of utmost importance, a schedule.

Her obsession is with action figures and Lego. She knows more about those things that I ever could.

Anonymous said...

This is the best thing I've read in a while. Now go out and fill that list!
Thanks for sharing.

C.J. Smith said...

Hi George
Thank you for your insight.
My sister Jennifer is low-functioning, mentally-challenged. Growing up, I lived in an abnormal household structured around Jennifer's routine and care. 43 years old later, this is my parents' retirement. I can relate to you probably on a level you didn't think was possible until I wrote this post.
Jayde is highly functioning, it was her communication limitations that slid her into the autism bucket and she sits very high at the top of the spectrum.
However, that doesn't mean she won't be without her challenges as they are all evident now at the age of 8.
Because of how I grew up, I take a page out of my mother's handbook and take it one day at a time celebrating each triumph as it comes knowing they will be few and far between.

Anonymous said...

that brought tears to my eyes, as a mother of a 14 year old daughter who has autism I can fully appreciate how you feel. There is a lot of hope for autistic children, we just have to keep up the fight and work hard for them and when they see their achievements it makes it all so worthwhile. Thanks for sharing.

Kelly said...

Wow this is awesome, to suddenly see so much all at once! My son doesn't say much (he's 5), I find it like pulling teeth trying to learn about anything that happens at school. And yes the "try so hard" part just tugged at my heartstrings. Hope you have a great Christmas!

C.J. Smith said...

I love you guys - seriously. Thanks so much for the kind words.

George said...

Forgot to mention....her handwriting is better than mine....

Skin Man said...

I love reading notes like this...made me happy. We all have different challenges in our lives, but its the best to see so someone over come them.

Thank you for the feels!!!

C.J. Smith said...

Thanks S-Man
I wanted to share this... being that time of year and all.

Anonymous said...

That is really sweet thanks for sharing!

Anonymous said...

My friend has autism and his younger brother has it too. That was so nice to see this and I am glad you shared this story to all of us.

C.J. Smith said...

You're very welcome. I don't write much about her autism but I'm considering I should. Maybe it will help me sort out my anxieties and help others.