Where do I take my child?
My best answer is wherever I need to. But, sometimes, we take him to events that center around autism.
For example, for the last five years, I have volunteered for Walk Now for Autism Speaks Los Angeles. It is one of largest walk events in the country.
Throughout the year, due to planning, Autism Speaks has monthly meetings. I not only have my son at the walk event itself, but I bring him to my meetings.
When I first began to volunteer for this event, I did go by myself. Two years ago my husband and I had a babysitting conflict and the respite person was not available. My choices at that time were only two; bring my child with me to a meeting or not attend the meeting.
My husband and I have held the theory for many years now that experiences are good for our autistic child. We have very rarely shied away from taking him with us to almost anything.
For the most part, including our son instead of shutting him out has turned out relatively well. We have learned what to bring with us and we generally know how to deal with him when he needs certain OT-related breaks. (These days, he simply tells us when he body needs a break.)
Did I bring my child to that meeting?
My first thought was “What better place to bring an autistic child?” Everyone in that room will be very accepting of him because most of the people involved have a child on the spectrum. Or they have some personal connection to autism. What an autistic-friendly place to bring my son!
My second thought was “What a great new experience for him.” All I needed to do was bring him some things to keep him occupied while asking him to give Mommy approximately an hour and a half to listen in her meeting.
My son did great that first time and now I take him with me to most of the AS meetings.
What about the conversations? Do I worry about what is being said?
Yes and no.
Our child has yet to formally acknowledge that HE is the one with autism. On some level, I believe he does know that he is the person we are discussing but he has yet to come to us and ask, “Hey, what is this autism? Who has it? Is it me? Why is it me?”
I believe one day my son will acknowledge autism and his connection to it. We are striving for that transition to happen as naturally as possible. And we are creating a “safe harbor” for him to be able to come to us with his questions/concerns.
Do we feel comfortable discussing autism in front of him?
We do. We do not believe in hiding him away from any autism-related conversation. It is about him, after all. Even if he hasn’t connected the dots yet, we still do not hide autism from him.
On the flip side of that, we do not parade him around with a sign on his back that reads, “I have autism.” But, we do talk about autism in front of him.
What is an every day example of what my son hears?
Here is one… I will say, “My son has a social skills group for autism,” to the neighbor. The neighbor will ask me to explain a “social skills group.” I will explain what it is. And this entire conversation will happen within listening distance of my son.
What else do you do with your child that is also autism-related?
We occasionally get invited to autism-related events. Recently we attended a roller skating party with an autism organization. The event was attended by families like us. Mothers, fathers, grandparents, and their autism diagnosed kids. Plus, their “typical” siblings. At this event, we ran into families we knew. We spent time with a family whose daughter had just begun social skills group with my son. It was nice to get to know that family.
We socialized with like-minded people. We connected with a group of people who understand what it means to call an emergency IEP or people who want to pick your brain about nailing biting. It’s a comfortable atmosphere.
And, in my opinion, it is necessary to get ourselves out there within the social world of autism itself. We tend to focus so much on our child’s learning curve of socializing. Why not take our family out and social with an accepting community. It wasn’t a problem that my child and I fell on our behinds often (neither of us know how to roller skate). It was challenging, but it was fun.
When will our son come to us with the “autism” question?
Of course, I don’t really know the answer to that. Honestly, I’m hoping it’s soon. Like everything else we’ve done, we have continued to believe that the earlier the better. I hope I’m ready for that question when the time does come. Then I can explain why I go to Autism Speaks meetings.
Why do I go?
I do it for him. I will tell him that. And I’m hoping the connection he will struggle with (at first) is made easier because he has experiences to draw from. All I can really do is prepare for that day.
Am I doing the right thing?
I’m not sure of that, either. I do recall some advice I received several years ago from a dad who thought it was better to not tell his son he had autism. He waited until his son was sixteen or so. Then he told him. That teenager struggled with it so much that he attempted suicide. I took that dad’s advice to heart!
That last example was a dramatic way of saying that I really believe exposure and experience will work for our benefit. Our child is a deep thinker and a sensitive soul. I believe when that connection happens, he’ll be somewhat prepared for it. I’m hoping to help that transition as best as I can. And that is all I can do.