Ang on Autism

 1 -  Tell me 3 things in your life aside from having a child recently diagnosed with Autistic Spectrum Disorder.

My husband and I got married 3 days after I turned 18 and recently celebrated our 18th anniversary. 

Now we have four kids and I’ve been doing the stay at home mom thing for a loong time. 

I’ve learned the hard way that the stuff I need in my life to stay above water are girlfriends and laughter and exercise and music all in steady doses. Maybe I should just move our family to a dance floor.

2 -  Who are the people in your family? Tell me about your kids.

Emily-13: Artistic and bubbly and witty.
Tom-7: Bright and social and sensitive This interview is because of him.
Simon-6: Momma’s boy and gentle and tough.
Magdelina-3: Expressive and spunky and affectionate.
Steve-39: My husband has a rare deep soul that awes me and fills me with love for him. He has a heart of gold and he makes me laugh my butt off daily.


3 - Where do you live?

Qualicum Beach, Vancouver Island, BC.

4 - What’s life like over there?

It's an ocean-side town where retirees and golfers live in peace and harmony with young families and teenagers, most of the time. Life’s a beach. Actually it isn’t but living 2 minutes from the beach helps.

5 - What is autism?

Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.
-Wikipedia

6 - What are some common misconceptions about autism?

One misconception that I had was that they are robotic people with no capacity for relationships. Tom has high-functioning autism, and he’s a very social person. But he is very rigid and when an invisible boundary in his mind is crossed he becomes extremely loud and emotional and inconsolable. Often he just wakes up that way. 

7 - What difference has it made to finally have a diagnosis for Tom?
 
My definition of Tom’s autism is confusing. But now that he has his diagnosis, a whole world of answers has only just been opened up before us. Those who’ve been close to me during this journey know what a weight has been lifted through this diagnosis.

8 -  What are some of your favorite things about your son Tom?

Tom is a serious romantic. He’s laid the designing of his future home to rest for now because he wants his wife to share in the planning. And last night he was digging through his collection of random things and he rediscovered the old little jewellery box for a ring that he’s been saving for when he asks a girl to marry him. I assured him that she’s going to love how he saved it just for her.

9 - Describe a great moment you’ve had with him recently.

He was so happy and hopeful when we checked out his new school this summer. Public school was like trying to fit a star into a square mold. He had an awful experience even though we had wonderful teachers. Not every kid is lucky enough to find school fun and easy. His new school is made for autistic spectrum kids. Just watching him explore the learning center equipped with a dimly lit relaxing lava lamps and pillows room, exercise equipment a big comfy couch and more, I could feel his spirit soaring. And every afternoon the kids take off and do gymnastics, swimming, hikes, etc etc. The kids can learn at the shared table, or lay on the floor and do their schoolwork or they can sit in a special room all by themselves. Tom shares his teacher with ONE other student!! One of my uber intellectual questions for the school director was whether the kids had to disassemble their Lego creation during clean-up like in public school. My great moment with Tom was watching a huge issue melt off his back as she said that she would often hide their creations in her desk for them.


10 - If it’s okay, tell me about what that was like for you as a mom, to start to tune in to something being a bit different about this beautiful soul.

 I don’t know. Tom is so very loud from the time he was a baby. His outbursts and behaviours took over all our senses and logic and we were in survival mode for years. Our tuning knobs were bust out and raw wires were all that remained. Only a few people understand what it’s been like for us. But then he would have a good afternoon or a good day and we’d be amazed again with the beautiful and interesting soul that he is. And then he’d have like 2 good days and we would tell ourselves that he would eventually grow out of his behaviours. It was really hard, that’s what it was.

11- What did you need from people at that time?

When Tom was 3 I needed our doctor to listen to me. I got a lecture for not feeding Tom only organic food and he reluctantly referred Tom to a pediatrician. The pediatrician said that Tom would grow out of it. We deeply wanted to believe him and part of us did.

12 -  What strengths inside yourself have you needed to draw upon?

Well, I’ve had to become far more resilient to how people perceive me in public. I secretly want us to be that nice quiet family that onlookers admire. The attentive mom with her darlings who wouldn’t think to displease her. Instead I have the opposite. I mean, we’ve fooled a few people here and there. There’s the sweet grannies who come to our table in restaurants to comment on how wonderfully behaved our children are. I hate that because then I’m on the edge of my seat waiting to pay the bill and get the heck out of there before all hell breaks loose. The thing with Autism is you don’t really get how you are affecting others and Tom has attracted a lot of attention with his public outbursts over the years. And of course that attention becomes directed at the seemingly brain-dead parents who have seemingly allowed and probably reinforced his behaviour thus creating the monster before them. That feeling of being judged left me in tears years ago. Now I just gotta say in my head: “Yeah, my kid’s too loud and I’m not reprimanding him because that will only make it worse at this point, so bite me” when I feel those eyes on me.

13 - What’s been the hardest part of this all?

I hate thinking about it but if only we had known early on when his mind was more pliable. Kids who are diagnosed early can improve dramatically through different therapies. So why aren’t doctors better informed? The latest statistic says that 1 in 68 kids in the US are on the autism spectrum.

14 - Who has been the most supportive?

Everyone. But, Tom’s grandmas have been huge to me through this.

15 - What has surprised you most about this all?

Honestly, that I want him the way he is. I never wanted a “different” child and the thought would have scared me to death back in the day but I have a good feeling about him. He has a pure heart.


16 - What are some of your hopes for Tom?

More honesty: His assessment showed that Tom is gifted. In an emotional moment for me, the psychologist assured us that our little conundrum could be the next Bill Gates. So my hope for Tom is that he will be able to go on many shopping sprees for his mom and give his parents a posh condo in Maui and a plane and also end world hunger in it‘s entirety. But I’d be pretty happy too if he found a satisfying job that utilizes his talents and pays the bills. I also hope that we can get him all the help he needs right now to overcome his verbal and expressive language learning disability. He’s going to need to accurately share what’s going on in his head from time to time. Thirdly, I hope that he finds that girl who’s going to appreciate the old jewellery box and that she appreciates the boy who saved it for her even more.

17 - What’s it like talking with friends and family about this situation?

They feel my joy. A fog has loomed over our family for centuries, okay more like 7 years. Now we find out that our beautiful yet confusing boy has a special gift that comes with all kinds of strengths and fascinating characteristics. And there’s a school and all kinds of programs in our area that are made just for him. Everyone is beaming with me.