One Mom’s Thoughts: Embracing Autism with Dignity

Claire Danes

If you watched the Golden Globes this past Sunday, did you notice the poignant moment between actress Claire Danes and Temple Grandin? I did. I noticed every single interaction between them. Why? Because I was watching those moments like a hawk. You see, Claire Danes won Best Actress in a Mini-Series for her portrayal of Temple Grandin, one of the most impressive autism advocates on the planet. A woman who happens to be autistic herself.

After Claire won, she and Temple hugged and that one instance brought tears to my eyes. You could see the excitement on Temple’s face. She was happy and she was relating and she was responding. When you know someone autistic, you understand how wonderful it is to see them experiencing simple emotions we all take for granted.

My older son was diagnosed with autism at the age of three. Today he’s a well-adjusted 6-year-old who continues to make progress every day. This is why Claire’s award was so moving to me. Not only was I seeing the amazing progress Temple has made in her own life, but I see the future for my own child.

One of the most compelling things I heard while flipping between the Golden Globes and the season premier of Big Love, was Claire’s acceptance speech. She started off admitting, “It’s a risky movie to make.” The word “risky” resonated in my mind. I can’t say with certainty why she used that term, but I know exactly what she means.

She continued by saying, “I have to thank Temple. She’s still at it, she’s still working with incredible zeal and devotion to illuminate mysteries about autism and animal behavior.” And then Claire used two words I will never forget. She thanked Temple for helping, “millions of lives who have been dignified and improved by your genius.”

Temple Grandin Movie HBO

Hearing those two words used together in a sentence – dignified – genius – to describe someone with autism, was a beautiful thing.  And it’s totally true. If you haven’t see the movie Temple Grandin, you must see it. If you know anyone with autism, it is absolutely imperative. The movie brings autism to light in a way that actually lets you see it. The pictures, the reality, the perceived reality. The unbelievable courage and devotion Temple’s mother exhibited should be an inspiration to every mom, whether you have an autistic child or not.

Plus, the genius of Temple is undeniable. The dignity she has brought to autism is undeniable. While I haven’t won a Golden Globe award and most assuredly never will, I would like to thank Temple too. I would also like to thank Claire for boiling it all down into a brief speech so poetically. Thank you. Thank you. Thank you.

Prepping Special Needs Child for Birthday Party

singing-birthday-cake

For most families, birthday parties are a no-brainer. You get a cake, buy decorations, invite all of your family & friends and celebrate the big day. As the mother of a special needs child, birthdays are a slightly different reality. Why? Because that inherent excitement about birthdays most children seem to be born with often escapes the grasp of a special needs kiddo.

For example, my son who is ASD (Autism Spectrum Disorder) does not like loud noises. When a big group of people get together to sing “Happy Birthday,” it would upset him because it was too loud. Many autistic kids are also only comfortable in routine situations.  Since birthday parties are spontaneous types of events, they are hard to prepare for even if you go over all of the different expectations and aspects. (Obviously some non-special needs kids also have these types of reactions to birthday parties too.) It can be an overwhelming event, even if you only have a few family members around.

This is why I think the My Singing Birthday Cake from Ohio Art Company is such a cool toy. It’s ideal for a mildly autistic child because you can prepare for the party through pretend play. You can explain how the candles work, how the cake will be cut and shared. You can also practice the singing with the actual birthday song. I know it might seem silly to “practice” a birthday party, but this would have been a great tool for us to use when my son was smaller. I think it would’ve made him much more comfortable at the real thing.

You can find this cake at Amazon for $50! It was also mentioned on Droolicious.

Living With Autism Diagnosis: One Year Later

MommyQ is about to reach an important milestone in her mommy life. It has been almost one year since I first blogged about my son’s autism diagnosis. My first post about his diagnosis, Autism Means My Son Is Happy When He’s Flappy, was probably the most difficult thing I’ve ever written. Yes, it was even harder than all of my college research papers and I was an English major, so there were plenty of those.

It is not just an important anniversary for me, but for my entire family. As for my son, he’s doing swimmingly. Literally! This summer he started taking private swimming lessons and it’s as if he was born to swim. His long, lean body glides through the water with grace and ease. His instructor is constantly amazed at his natural aptitude for it. We have to keep a very close eye on him because he thinks he can do anything in the water, which is good and bad. It will be exciting to see how well he does next summer.

His communication skills have improved so much over the past year. He asks for what he wants, identifies his feelings, interacts with others and asks about his surroundings. Thanks to my mother’s influence, he has exceptional manners too. He has fully mastered potty training with not even one accident! He and his little brother are the best of friends and play wonderfully together. He has developed a terrific sense of humor and can be quite the entertainer at times. We couldn’t be more proud.

While we are thankful for all of his accomplishments, living with autism is not easy. I still find myself wondering if he was born normal and a vaccine changed him forever.  I feel frustrated when I can’t understand him and I feel sad when I realize I may never see the world as he sees it. Thinking about the future and whether or not he’ll be fully independent one day, is too much to handle. The day a teacher, classmate or friend makes him feel inferior in any way haunts me. My brain reminds me, “One day at a time. Take it one day at a time.” My son’s smiling face and big hugs speak volumes. Tomorrow is a new day!

If you’d like to read my previous posts about autism, you can find the links below or just click on “Advocate Mommy” for all posts:

-Autism Rides Off Into The Sunset
-Swallow Your Pride: Get Your Toddler Speech Therapy

Who is Watching Over Our Autistic Children?

I like to end my weeks on a positive note for my readers, but that’s not going to happen today. I just read an article about Isabel Loeffler, an eight-year-old autistic girl who spent three hours isolated in a glorified closet, a “time out” room, at school. Read the full story here.

There’s also this story about Jose Gabriel, a three-year-old autistic boy who was left alone on a school bus for more than six hours. He evidently rode the bus to school and was still sitting in the back of the bus when the school day ended – scared, weak and sweating – six hours later. The bus matron was supposed to look after him.

And then there was the heartbreaking story about Alex Barton. In May 2008, his teacher kicked him out of his class saying he was “voted out” by a 14-2 margin. Alex’s classmates also told him why they didn’t like him and his teacher thought that was appropriate.

As the parent of an autistic child I am not only outraged and disgusted by these events, but also deeply saddened. Any parent with an autistic child knows the severe emotional damage these types of events cause. Autistic children are already isolated enough. Putting them in “time out” rooms, neglecting them on the bus and voting them out is EVERY PARENT’S WORST NIGHTMARE. Any one of these things can set an autistic child back for a long long time, obliterating every tiny step forward.

If a perfectly normal high-functioning child were to endure one of these horrible situations, it would scare them, hurt them, emotional scar them, etc. And they understand the world around them. So imagine how much worse it is for a child who doesn’t understand the world around them. Who doesn’t know how to communicate. Who doesn’t know how to speak up. Not to mention these children are BABIES, especially the two boys under five. Who treats young children with such disrespect and cruelty? It is despicable.

We send our ‘distracted ducks’ to school, hoping the teachers and adults in their lives will reach out, understand, protect, embrace and help them. Build their confidence. Encourage their growth. Fuel their spirit. Instead some are emotionally abused, neglected, ostracized, belittled and shattered.

I feel extremely blessed to have outstanding teachers, therapists, relatives and friends in our lives who love my son as much as we do. To Isabel Loeffler, Jose Gabriel, Alex Barton and the parents who must endure and overcome difficult obstacles – I’m rooting for you all. I understand. And to the adults who use poor judgment and let us all down, how dare you.

Autism Means My Son is Happy When He’s Flappy

In a conversation the other day, my best friend mentioned that her 4-year-old son gives directions to his school when his grandparents take him. “He can give directions?” I asked, amazed. Of course he can, I thought to myself. He’s four!

It’s always been weird for me to hear about the interactive things all of my friend’s kids can do because my oldest son is autistic. He has mild autism, but it’s still autism. My friends talk about how their kids come home from school and chat about what they did that day. Or their kids tell them when they’re hungry or what they want to eat. Their kids answer questions like, “How old are you?” or “What do you want to do today?” My son doesn’t. Their kids go on and on about a show or a movie or nothing in particular. My son doesn’t. Their kids initiate conversations and talk about what they like and how things make them feel. My son doesn’t.

We got the diagnosis about 4 months ago and it wasn’t a big surprise. We were expecting it. Although that certainly didn’t make it easier to hear. Part of me died of heartbreak that day. Watching my son happily flap and hop around the room while the word “autism” stung my ears… My husband and I shed lots of tears that day. We mourned for my son and for his little brother who might never understand him and for the uncertain future ahead of us.

Today autism is part of our family and we are trying to accept it. But I do find myself playing the “what if” game sometimes. What would he be like if he didn’t have autism? What sports would he like? What funny jokes would we share? What kind of big brother would he be? I know it’s useless to think such things, but it seems unavoidable.

I love my son and I’m trying to embrace his autism. Would I change things if I could? Honestly, no. My little guy is a sweetheart. He’s an incredible soul and has an exceptional personality that will take him to great places. He gives hugs and kisses and we even hear “I wuv you” now and then, so there isn’t too much to complain about. And besides, he’s happy when he’s flappy.