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He is not mentally retarded! I don't know how many times I said that in the seven years it took to get an autism diagnosis, or how many times I added on that whoever was evaluating him was mentally challenged.
I knew Connor was smart. He was reading at about 18 months, when he taught himself. He could easily follow multi-step instructions before he should have been able to. But, and there is always a but, he had a few really crazy quirks. As a baby, he had to be in motion. All The Time. We bought a battery powered baby swing and a few sets of rechargeable batteries, just to withstand the first year. He wanted some sort of stimulation, all the time. It was exhausting.
Most kids follow this nice pattern of learning. Connor didn't, he was all over the place. He could do puzzles before he was a year old, but was nearly two before I heard him say mama. He mastered sign language before he could use a spoon. Potty training? Forget it. It wasn't on his radar until he was 4. He wouldn't tolerate certain noises, hates fluorescent lights, some food would make him gag or vomit, lightening storms are still cause for alarm. No matter who I took him to, I got one of two answers. He's fine, he'll grow out of that or you will probably have to institutionalize him when he's older, he's just mentally retarded.
It's no wonder it took me 7 years, 3 pediatric practices, 2 Psychologists and having him get thrown out of 1 school (because he refused to go near a guy with a weed whacker - don't ask) to actually have someone say - 'Yup, that's autism'.
Having a child with autism is not like having a child with diabetes. There is no guide book, no, do this, stick to it and 99% of the time everything is well managed. Autism is more like fishing your kid out of the dreaded ball pit at Chuck E Cheese. You don't know what's on or under any of those balls, and you really, really don't want to, and every time you go there, it's something different. The autism your kid gets is different from the autism another kid gets. It's some twisted version of neural development roulette. We got speech delays, lack of eye contact, sensitivity to light and noise, need for stimulation (via hand flapping, mostly), compulsive behavior, ritualistic behavior, social impairment...blah, blah, blah. What does all that mean?
It means, he learns differently, we teach and talk differently. He needs a schedule to live and function day to day in, so we make one. Just like all other nearly 14 year olds, he has chores, homework, responsibilities and isn't fond of showers, but they're on the schedule and there are repercussions for not following the schedule, so he does it. I carry ear plugs in my purse if we go somewhere that might have loud noises, and sunglasses and hats are a must. We practice social behavior, we remind him to use his words, look at people when he talks to them, sit on your hands if feel the need to wave them around. We phrase things differently and have to ask questions a number of ways sometimes until they can be understood and or answered. Each day brings some new challenge, and sometimes a victory or two as well.
If you've gotten this far, and don't have an autistic child, all I can say is thank you for caring enough to learn a bit more. Most people don't care unless a subject affects them directly. The truth is, it probably does, they just don't know it. In the U.S. alone, 1 in 88 children has autism. 1 in 54 are the stats for boys. The people who have autism aren't mentally deficient, they just interact with the world differently.
I hope you take the time this month, to see the world a bit differently. Let yourself imagine what it would be like if you could only interact with your loved ones through 20 different phrases, or had to relate everything you learn to pokemon characters, because that's what you're fixated on right now. The next time you're at the grocery store imagine how hard it would be to comparison shop because the lights are too bright (think hangover bright, and pulsing), four other people's conversations are disrupting your concentration and the store has changed which aisle and shelf the only chips you eat are kept. You can't move on to the next item on the list because you must do the list in order and if you can't, you have to start over.
I knew Connor was smart. He was reading at about 18 months, when he taught himself. He could easily follow multi-step instructions before he should have been able to. But, and there is always a but, he had a few really crazy quirks. As a baby, he had to be in motion. All The Time. We bought a battery powered baby swing and a few sets of rechargeable batteries, just to withstand the first year. He wanted some sort of stimulation, all the time. It was exhausting.
Most kids follow this nice pattern of learning. Connor didn't, he was all over the place. He could do puzzles before he was a year old, but was nearly two before I heard him say mama. He mastered sign language before he could use a spoon. Potty training? Forget it. It wasn't on his radar until he was 4. He wouldn't tolerate certain noises, hates fluorescent lights, some food would make him gag or vomit, lightening storms are still cause for alarm. No matter who I took him to, I got one of two answers. He's fine, he'll grow out of that or you will probably have to institutionalize him when he's older, he's just mentally retarded.
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Having a child with autism is not like having a child with diabetes. There is no guide book, no, do this, stick to it and 99% of the time everything is well managed. Autism is more like fishing your kid out of the dreaded ball pit at Chuck E Cheese. You don't know what's on or under any of those balls, and you really, really don't want to, and every time you go there, it's something different. The autism your kid gets is different from the autism another kid gets. It's some twisted version of neural development roulette. We got speech delays, lack of eye contact, sensitivity to light and noise, need for stimulation (via hand flapping, mostly), compulsive behavior, ritualistic behavior, social impairment...blah, blah, blah. What does all that mean?
It means, he learns differently, we teach and talk differently. He needs a schedule to live and function day to day in, so we make one. Just like all other nearly 14 year olds, he has chores, homework, responsibilities and isn't fond of showers, but they're on the schedule and there are repercussions for not following the schedule, so he does it. I carry ear plugs in my purse if we go somewhere that might have loud noises, and sunglasses and hats are a must. We practice social behavior, we remind him to use his words, look at people when he talks to them, sit on your hands if feel the need to wave them around. We phrase things differently and have to ask questions a number of ways sometimes until they can be understood and or answered. Each day brings some new challenge, and sometimes a victory or two as well.
If you've gotten this far, and don't have an autistic child, all I can say is thank you for caring enough to learn a bit more. Most people don't care unless a subject affects them directly. The truth is, it probably does, they just don't know it. In the U.S. alone, 1 in 88 children has autism. 1 in 54 are the stats for boys. The people who have autism aren't mentally deficient, they just interact with the world differently.
I hope you take the time this month, to see the world a bit differently. Let yourself imagine what it would be like if you could only interact with your loved ones through 20 different phrases, or had to relate everything you learn to pokemon characters, because that's what you're fixated on right now. The next time you're at the grocery store imagine how hard it would be to comparison shop because the lights are too bright (think hangover bright, and pulsing), four other people's conversations are disrupting your concentration and the store has changed which aisle and shelf the only chips you eat are kept. You can't move on to the next item on the list because you must do the list in order and if you can't, you have to start over.
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