This is Eric (MaryBeth's husband) and I have had a lot on my mind lately specifically about raising children with autism, and as it is the Christmas Break, I've had a lot more time to spend with our two boys, so I got permission to do a guest blog post on MaryBeth's page, because this post wouldn't really fit in with my blog.
For the past year or so when I've been catching up with old friends, or meeting new people through my work one of the first things I tell people about my family is that I have two autistic sons. I remember before we had children with autism I didn't understand why people felt the need to tell me they had children with autism or other special needs, but now I think I'm starting to get it.
Possible Reason One: Networking
A couple of years ago I was having a stressful time with school and work and doing some volunteer things for our church. It was a very challenging time for me and I remember snapping at some people because they were not doing what I thought they should be for a certain project. One of the men I snapped at called me on the phone and we started talking. He wisely asked me what else was going on in my life other than the project we were working on. I told him about school, work, and about just getting the diagnosis for autism for Matthew.
He paused for a moment on the phone and said, "I know exactly what you are going through. I have an autistic son who is now 20." We talked for quite a long time, and after our conversation we had found some common ground and he became one of my biggest allies in getting that project successfully completed.
I have had similar situations with my work as a teacher. I work in a cyber school, so I don't see my students, and they are from long distances away. Sometimes I will call a parent and ask about their student and I recognize the tone in their voice when they tell me their child is autistic. They often sound tired, frustrated, and at the end of their rope, and I can completely relate.
It is wonderful to have other people understand where I am coming from, despite the differences in the spectrum of autism there are also so many similarities. There is a special connection between people who have things in common.
Possible Reason Two: It's All Consuming
This is something that is really tough to understand if you are an outsider, but I'll try to describe a typical day or part of one, and see if it makes more sense:
Emma at 5:
"Emma, it's time for school. Brush your teeth, get dressed. We're leaving in ten minutes."
Then Emma would brush her teeth, get dressed and be ready to go out the door for school.
Matthew at 5:
One hour before he leaves for school, he walks past the bathroom and comes into our room. We remind him that he needs to go potty first thing in the morning, and he goes back to the bathroom, then returns to our room. He needs help snapping up his pajamas. Then he gets into bed with us for a morning snuggle. If it is too short he will be cranky all day long.
Then we have breakfast, usually the same thing each day, but if he sees a sugar cereal, or an apple, or candy, or anything left out from the previous night (cookies, cake etc.) it's a meltdown, and a repeated request for that kind of food for about a week. He needs to eat at the counter because he will not eat what everyone else eats, and if another child finishes eating their 'healthy' breakfast and grabs a sugar cereal we have another meltdown. Some days he wants someone to sit next to him or he won't eat, if that happens, the entire morning routine is thrown off. Assuming everything is put away, and we have an event free time, we get him breakfast without a hitch we move on to getting ready for school.
We still need to brush his teeth, pick out his clothing, and dress him. If he has his mind set on a certain pair of socks, underwear, shirt or pants, we play a guessing game amidst various forms of pointing, signing, and some attempts at speaking. When he is dressed, teeth brushed and suited up for whatever weather there is outside, and we get him out the door to his driver. If the driver is more than two minutes late meltdown time, and fight to get him into the car.
And thus it is for every aspect of our lives. What most kids grow out of, we face daily, what most kids do for themselves, we do for them, what most kids will eventually catch on to, ours might not, what most kids can understand, we have no way of knowing if he gets it.
Real Reason: It Defines Me and My Family
Being a parent of an autistic child defines who I am more than any other part of my life. It consumes more of my time, energy and attention than anything else I do. Almost every decision we make, every daily activity, every trip to a therapist, every plan for the future focuses around autism.
So the real reason I say I have two children with Autism, is not to get attention, or make you feel bad for me. Although I love finding other people who I can connect with and get great ideas from, it's not even to network out to others.
I tell you this because it is who I am, more than a teacher, an author, or anything else I do in life. I am a parent of children with autism.