"Hi, My name is...and my son has Aspergers"

For two hours last night I was normal. My husband was normal. We were normal together. When I mentioned my feelings on my son hitting me, there were no looks of shock or bugged eyes. When my husband talked about sometimes needing a break from our son's intense interests, you could see the other's heads nodding in understanding. For just that short time, our family was just like everyone else's.

I guess I naively thought once you got a diagnosis of Aspergers that would be the beginning of therapies, support groups, classes. I had figured there would be tons of handouts with all kinds of different groups to join. Boy, was I wrong. Nothing really changes. You get the diagnosis, go home, and the next day is exactly the same just now with a name. And so since Jacob's diagnosis in October we have been searching. Looking for someone, anyone to connect with. Someone who also has a child with Aspergers. It took a while, but we found one, and not only one, but several!

A month ago while attending a workshop put on by my son's school on "Friendship", I hesitantly asked a question at the end of the session. In my question, I mentioned my son having Aspergers. You would have thought I was an alien by the way the group looked at me. Some with pity, some uninterested, some judging, some sympathetic but glad it wasn't their child. The moderator had no real solutions. She couldn't relate to my situation no matter how much she tried, and she quickly tried to brush me aside. I felt alone and discouraged. And that's when just as I was getting up to leave as the session ended, a man at the table next to me introduced himself and said, "My 9 year old son has Aspergers." Those were words I had been wanting, hoping and praying to hear from someone for months. He went on to tell me how they were in the beginning stages of helping form a support group and gave me all the information I would need. I went home that night giddy, filling my husband in on my conversation with this man. I was so thankful I had said something in front of the crowd of well over a hundred. Finally, another person who got it.

So that's what brought us to the church last night on a beautiful spring evening. The meeting began like every support group you see on TV, with everyone introducing themselves and saying what brought them there. As I listened to everyone's stories, it felt so familiar and comfortable, so much like our own, the only differences being the ages and passions of each child.

The thing that was great is everyone just listened and shared stories of how they could relate. There was no "well intended" parenting advice. There was no "That wouldn't happen in my house!" Or "Oh, my son does that too and is obsessed with Spiderman right now. Last week it was dinosaurs."  (Ummm....no, sorry...that's not an obsession.) That's what made the meeting different. All these people got it. They really got it! For the first time, someone actually one hundred percent understood everything we were saying, feeling, and experiencing with Jacob, and without any judgement or preconceived ideas of their own.

Sometimes when we try to explain our son to our family, friends, acquintances, or even strangers, as much as they want to, they really don't get it. All kids can be scared of stuff, have special interests, not like to get their hands dirty, have an occasional meltdown. Aspergers is much more than that. Fears are intense and irrational causing panic. Special interests last for years and that is the ONLY topic they want to talk about from the moment they wake until they go to sleep. Sensory issues prevent them from enjoying typical childhood activities such as playdoh or sandpiles. And meltdowns are not occasional. My son could still be having meltdowns as an adult. Hopefully with time he will learn some coping skills. Aspergers is everyday, all day long. Sometimes I feel like I have to convince people that Jacob has Aspergers, because he does look and act normal much of the time. And a lot of times well intended parenting advice is given to which I politely nod. Typical parenting approaches are not effective with Jacob. Trust me. We've tried them. Aspergers is not a parenting problem, nor can it be solved with "good" parenting skills. Sometimes people will say, "Well, just tell him. Tell him how it's going to be!" Really? Really? Good luck with that. I try not to focus on it or let people's ideas on my son bother me, since I know they are well meaning.

I didn't want to leave last night. I think my husband and I both could have stayed for hours. It just felt right. I felt alive again. It was as if it gave me that hope and reassurance I needed. It made me feel that my husband and I were doing ok. We were doing the best we could. A huge weight felt like it had been lifted off my shoulders giving me a clear mind and the energy to keep pushing forward. Next month can't come soon enough.