Saturday, April 2, 2011

World Autism Awareness Day

LIGHT IT UP BLUE! World Autism Awareness Day is an anniversary of sorts for us. We came out to the world. Last year, our daughters had been diagnosed a few months earlier and our son was showing some of the signs. We had never admitted the diagnosis to anyone other than family. I was so worried that people would think that I had special needs if I admitted that all of my children had special needs. With my heart pounding, I typed the words, "Please LIGHT IT UP BLUE for our three Autistic daughters and our son who is showing the signs." on my Facebook status. I waited to see the response. So many people were struck by the magnitude of us having more than one child with special needs and I suddenly realized, it was so hard!

Instead of being seen as a special person, I was suddenly viewed as tough and determined. I was a mommy on a mission to save the world and ensure that my kids were accepted and loved by everyone. And to a certain extent that was true but in another way, that persona that I still have as a no-nonsense woman that can handle the reports and notes home, the violence and silence was a sham. For the longest time, the idea of crying and taking a deep breathe was frightening to me. I would memorize the reports so that I was able to sprout out statistics about each child at the IFSP meetings. I learned quickly that focusing on the positive accomplishments of the kids seem to make the Early Intervention Official less likely to approve a greater amount of therapy.

The first IFSP that I attended for Bugabuga was jarring. We didn't know what to ask for and were so thankful when they offered us 30 minutes of speech therapy twice a week. They also wanted to get a physical evaluation. After 4 months of calling our service coordinator and realizing that she didn't care about setting up that evaluation, I contacted the Commissioner of the Department of Health. I found her email address on one the papers that I had signed and figured that it was worth a shot. An evaluation was completed two days later.

Every meeting I walked in focused. I needed to get the maximum amount of therapy so that they would get better. They had to get better. I would speak passionately and my eyes would fill with tears at the right moment to drive home a point. My voice would break at a pivotal moment. I worked it but I didn't feel a damn thing. The things written in the reports were so abhorrent to me that I couldn't bear to accept that the reports were about MY children. It became a movie to me, a mother had to deal with this, how should she react, what was appropriate. To the world I modeled what I thought I should act like but at home after these meetings, the words would run through my head when I closed my eyes to sleep. My nightmares became so intense that I just stopped sleeping. I couldn't bear to close my eyes unless my husband was right next to me. And even then I woke up every 15 minutes terrified. I became a master of crying silently- my breathing doesn't even change anymore. I was so angry. I worked for years to get pregnant and then I had to face the idea that my children may never speak, may never have a normal life. I would occasionally walk out of a room and close the door. Alone, I would punch and kick the wall until I broke a sweat. I needed my babies to speak. All the therapists recommended that we delay our responses so that the children had to speak to get their needs met. So many times, I heard crying, grunting, meowing but no words and I knew what they wanted but I held back. It went against every instinct that I had as a mother. I waited and let them cry. I kept an encouraging smile on my face and waited.

"! I wan ocolate milk!" "Aaaaaaaa, chicken, aaaaaaa, rice" "Ooooo, food, alright, okay!" "Give me food, Mama!" Their sentences are beautiful. Every single thing they say, every word they use motivates me to motivate them. It's like a balm on my soul. It was worth the fight. It was worth having 135 hours of therapy a week, every week. They are so worth it. "Ah ove you!" "I love you too, babies." Happy Autism Awareness Day.

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