When I was 11 years old, an awkward middle schooler, I wanted to be a singer and was regularly appearing on a local kids-oriented TV show called "Ready to Go". I took modeling classes, thinking that I, this big-boned, adopted Indian girl, could be a famous actress or model. (This was somewhere in between wanting to become a US Senator and changing the law to allow non-American born citizens like me to run for President). I swam on the swim team, making it to the States in backstroke. I was socially pretty awkward with boys, but had a small and good group of friends. I had my whole life in front of me. I had dreams and aspirations. I thought I would make something grand out of my life. (Footnote: clearly that didn't happen.)
Today, reality struck as I sat in the waiting room at NESCA, listening to my 11 year old son intermittently scream while undergoing psychological/IQ testing by two very talented clinicians/testers. He couldn't even cope- it was too hard for him. During a break he had earned, we decided he needed the Leiter instead, which is a non-verbal intelligence test. A is verbal, he used to test with an average IQ despite his autism. Not nowadays. Whatever is going on in his brain, he tests with an IQ in the 50's or 60's: mental retardation for those older, intellectual or developmental disability for those of us now.
A's aspirations. Most involve being married to a girl who is a family friend who probably just looks at him as a unique kid, certainly not as her "boyfriend". Andrew has mapped out their lives together to age 30. He writes detailed forecasts, sometimes for months, with ease. He screams when he doesn't like "Mother Nature's" forecasts. He wants to work at Channel 7, alongside his email/meteorologist buddy Jeremy Reiner. That fantasy world is the grand sum of Andrew's dreams. He should dream high, every kid should.
I wonder if A will ever live on his own someday. I wonder if he will ever have a real relationship. Heck, I wonder if he will ever have a real friend again. It breaks my heart to see how much he wants normal things, yet realize he can't really learn in any normal fashion anymore and certainly isn't able to be tested as functioning as anywhere close to his age. It's kind of like having a 6 year old in an 11 year old's body. Maybe it will be that way forever.
My dreams changed over the years. All it turns out I wanted was to be a wife and mother and have a happy family. I just want Andrew to attain all his dreams, and today was a reality check I was not ready for. Parenting a child with autism and intellectual disabilities sucks sometimes.
God, I love him and his quirks to pieces. Tonight, my heart just breaks, maybe more for me and what I want for him than for the simple things he wants for himself. 11 year olds should have big dreams and hopes. I am mourning the little boy I lost to autism somewhere along the way.
Tuesday, October 26, 2010
Monday, October 18, 2010
Thursday, October 14, 2010
Practicing Kindness
If I had to choose one life lesson that I hope my kids carry with them as they grow into adults, it would be practicing kindness towards others. It's not hard to be nice.
At Wendy's (insert "Laurel is severely culinarily challenged" jokes here), there was a gentleman,who happened to have a modified wheelchair next to the table. He was enjoying dinner alone. As he struggled to get up from the seat and into his wheelchair, it broke my heart because you could see (I think) ) he was in pain and discomfort.
Sitting right next to him was a rather preppy looking family with 2 preteens texting on their cell phones, all with Polo/designer clothes, and the requisite dye job on the mom, Dad talking loudly on his cell phone about some financial deal wearing cufflinks that probably cost more than all my jewelry combined. The "perfect little family". (I perhaps have my own work to do on being judgmental).
I was eating my baked potato with my girls. The man was having an awful time maneuvering his wheelchair, while holding the tray that he was trying to throw away. The aforementioned family's girls stared at him, while the parents intently looked at their food. He was a foot away from their table. No offer of help came from them.
I walked over and asked if I could take his tray for him. He got tears in his tears and said thank you and apologized for some purported inconvenience , with very garbled speech. I said, loud enough to let the family and the staff and my kids hear it, "It's my pleasure. You have nothing to be sorry for. Have a good night".
People should help people. It's not that complicated. The entire episode reminded me that our kids learn by example. My girls (whose backs were to the situation and didn't see anything until I went over to help) asked me why the other people did not help. I reminded them to not worry about what other people choose to do because we don't know why their hearts don't tell them to. I reminded them how good it makes one's heart to provide someone a little TLC and care.
We have a person with a disability in our family. My daughters certainly already get "it" a lot more than most kids do. Last night, I was in a really grumpy mood. I needed an attitude adjustment. I got one from such a small event. My daughters saw kindness in action. All was good.
At Wendy's (insert "Laurel is severely culinarily challenged" jokes here), there was a gentleman,who happened to have a modified wheelchair next to the table. He was enjoying dinner alone. As he struggled to get up from the seat and into his wheelchair, it broke my heart because you could see (I think) ) he was in pain and discomfort.
Sitting right next to him was a rather preppy looking family with 2 preteens texting on their cell phones, all with Polo/designer clothes, and the requisite dye job on the mom, Dad talking loudly on his cell phone about some financial deal wearing cufflinks that probably cost more than all my jewelry combined. The "perfect little family". (I perhaps have my own work to do on being judgmental).
I was eating my baked potato with my girls. The man was having an awful time maneuvering his wheelchair, while holding the tray that he was trying to throw away. The aforementioned family's girls stared at him, while the parents intently looked at their food. He was a foot away from their table. No offer of help came from them.
I walked over and asked if I could take his tray for him. He got tears in his tears and said thank you and apologized for some purported inconvenience , with very garbled speech. I said, loud enough to let the family and the staff and my kids hear it, "It's my pleasure. You have nothing to be sorry for. Have a good night".
People should help people. It's not that complicated. The entire episode reminded me that our kids learn by example. My girls (whose backs were to the situation and didn't see anything until I went over to help) asked me why the other people did not help. I reminded them to not worry about what other people choose to do because we don't know why their hearts don't tell them to. I reminded them how good it makes one's heart to provide someone a little TLC and care.
We have a person with a disability in our family. My daughters certainly already get "it" a lot more than most kids do. Last night, I was in a really grumpy mood. I needed an attitude adjustment. I got one from such a small event. My daughters saw kindness in action. All was good.
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