A day without Autism is like a day without sunshine.

I say the word autism every day. I don’t wake up saying, hey autism or anything like that. It’s just such a part of my existence, my essence that in some way or another it comes out. I can’t even say why, it’s not like I plan it but I guess it is always on my mind.

I work full-time for a great company that provides awesome autism benefits. For those of you not involved with autism, I must tell it is extremely rare. I have “outed” myself at work and have let people know that I am an autism advocate. I have hosted two Lunch N Learns here at work on Autism and so I’ve become the “postergirl” for Autism at work. Funny, I always used to think of myself as a Bryan advocate, which of course I still am, I just think both Earl and I have grown and matured in our need to spread awareness. For me, as I’ve said before I have learned the most significant, the most thoughtful, and the most useful information from other parents. I say parents and not just moms because I am lucky enough to know a couple of great dads of children with autism. (my husband especially) I think most people who know me, know about Bryan, my office has autism stuff in it, my car has an autism magnet and I talk openly about it. I NEED to do this; I feel compelled to share this info with others because it might help someone and the thing is if your kid has autism, you’re screwed. It doesn’t go away and you don’t know how to treat it and no matter what the crazies say, no one else does either. Many years ago, when Bryan was about 3 1/2 we went to a Saturday morning gym class. At this class the kids were in a big play area and the adults sat upstairs on the balcony watching the kids below. It was good exercise for him, but every time they had circle time and he didn’t participate I felt like throwing up. At this point Bryan was getting intense therapy, speech 4x/week, OT 4x/week, PT 2x/week and just wasn’t making eye contact, wasn’t potty trained, and the echolalia was off the charts. (echolalia- the often pathological repetition of what is said by other people as if echoing them-not my definition, belongs to merriam-webster). He couldn’t converse with us but could recite a whole episode of Blues Clues or repeat whatever you said to him. So on these Saturday mornings I sat next to a woman who was a high power executive at a consulting firm. She was the bread-winner in her family. This woman’s son is about 2 years older than Bryan. I was like a little bird waiting for a worm sitting next to her. She told me about sensory integration things you could buy, about a woman who potty trains special needs kids, about ABA and just a whole host of things that were well beyond my comprehension at this stage. She was ON IT. I started bringing a pad with me. She gave me her business card and I used it. I think at that point I realized that we needed help to navigate this disorder, and at that point we didn’t even know exactly what we were dealing with, it was a strange and confusing time and this woman could sense my need for a mentor.

This morning I had a meeting at work with someone who I have spoken to a few times but never in an in-depth manner. We had something that we needed to go over and when I was describing something about myself, I mentioned I have a son with autism. We concluded our business and then she asked me if I wouldn’t mind telling her a little bit about my child with autism. She is a first time mom of a little girl, under age 2. She was not having concerns about her child, but she has heard so much about autism and the signs, vaccines, etc. that she wanted some more information. It’s always interesting to hear myself tell the story. What was once a terrifying and heart wrenching part of my life, is now a matter of fact part of my history. So there, I said autism before 9:15 am.

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3 thoughts on “A day without Autism is like a day without sunshine.

  1. This is a wonderful point of view! My 2 year old is receiving services from Early Childhood Intervention. His developmental therapist says it is likely that he has SPD and is on the Autism Spectrum. We are waiting for our appointment with a Developmental Pediatrician to find out for sure. How do you cope on days that are especially difficult?

    • Hi thanks for your comments. On tough days, it is a combo of crying, laughing and just sheer will. As you will see from my posts, I am up and down all of the time. Hang in there and let me know how I can help. Jane

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