Thursday, March 17, 2011

Daniel Saved Me

Where would I be right now if I didn't have Daniel in my life 2 years ago? What did I do to deserve that (at the time) nearly 4-year old child? And how did he know what I needed him to do to keep me going at what was probably one of the hardest times of my life?

A few days ago (March 12) marked the 2nd anniversary of our entry into the Autism World. I had already been thinking that the problems we had been seeing with Simon were related to autism, even though I don't think I ever said this out loud or even thought about it in these terms. Rachel, however, I was completely clueless. But I remember sitting in the developmental pediatrician's office after she finished interviewing me and observing the twins for a while and her dropping the bomb that, yes, they were both "on the spectrum". I remember just feeling like my world had just ended. I remember having to remind myself to inhale and exhale. I didn't know what to ask. I didn't know what to say. I focused on Rachel. "Alright," I told her. "Simon I understand. But Rachel? Where does that come from?" And I sat there while she explained it all. And I just nodded and agreed with what she was saying, but I don't think I heard a word of it. Then we as a family piled into our full-size SUV and drove from our Maryland home to Walt Disney World for a week-long vacation that we had been planning for months. Because what else is a parent to do once they learn their children are "on the spectrum"? Why, WE'RE GOING TO DISNEY WORLD!

So, how did Daniel save me? When we got back from that trip, our new lives had begun. We had our evaluations by the school's early intervention service organization (MCITP). We agreed to a plan or course of action of what we would do to help each of them. I'm still sitting there in a bit of a fog, trying to digest everything that's happening. Then Daniel comes in. He's just turned 4. He has nursery school 2 days a week. He takes gymnastics one morning a week. He's in a playgroup that meets weekly. He's friends with other kids in MOMS Club that he wants to be with. He needs to go to the park to play. He needs to be busy or he gets into all sorts of trouble. He's a social butterfly. He needs to be with his peers. And since he needed this, I gave it to him.

I had no choice. Daniel is my son, just as much as Simon is. So I would take him to preschool. I would go to playgroups. We would do the Park Playdates with MOMS Club. We would go to gymnastics class. His life stayed pretty much the same as it was prior to March 12, 2009. And that's how he saved me.

I keep hearing about how people retreat into themselves when they learn of their child's diagnosis, actual or provisional. They focus on treating autism. They focus on getting kids to various therapies. They focus on the schedule of all of the appointments that parents of children on the spectrum are expected to incorporate into their daily life. They don't spend time with their friends because (1) they don't have the time and (2) it really becomes painful to see other children without these challenges achieving these things so easily that our children have to work so hard to even start to mimic. Their isolation grows. Before long, they lose their identity completely.

I had Daniel. I couldn't afford to isolate myself. He needed me to keep his social life going. And he needed a social life. He needs friends. He needs life to be "normal". And I focused on giving that to him as well as trying to do everything I could for Rachel and Simon. There were days where it felt impossible. There were days (many of them in fact) where I was completely overwhelmed by it all. But I had to focus on my kids needs. ALL of them. Daniel isn't directly affected by autism. He shouldn't be made to suffer because autism has taken over everything else. I made a promise both to myself and to him.

And I have worked hard to be sure that I keep that promise. I'm not going to say that I've done it 100%. But because of Daniel's needs, I was able to keep a portion of my sanity alive. I didn't fully retreat into the autism world. It definitely affects everything I do. And there isn't a single day since March 12, 2009 that autism hasn't reared it's ugly head. But, thanks to Daniel, I can hold onto something that autism hasn't taken over completely. I can be a human being and not just an "Autism Mom". I can continue to be ME, even though I have been drastically changed because of my experience.

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