More on life with Autism
I've had requests to talk more about life with Autism. One thing that's difficult to convey to people with typical kids. My life is normal. That is, normal for me. It's what I do every day and I don't know anything different so it's routine, normal whatever you want to call it.
That said, very, very few people understand my life and how it works. That is, things are often so radically different it defies explanation. Even with our own families I frequently have to explain (or try to) why some things are the way they are or why they are simply not possible.
One huge stumbling block is when people fail to realize the importance of Routine and Structure. I capitalize these two because they are the primary drivers for people with Autism. Without them, my son cannot function. Literally, cannot function. The best description I've heard is the allegory of Flying To Holland. Imagine you book a vacation to Holland. You contact your travel agent to get some brochures. You see the windmill, the tulips, the dykes and the wooden shoes. You pick your hotel after careful consideration. You read up on local attractions and plan your itinerary. You even brush up on some Dutch phrases in hopes of impressing the locals. After weeks of planning and preparation your departure day is finally here. You're packed, rested and ready. You get on the plane and thumb through your guidebook. Then the plane lands. In Italy. You are booted off the plane and it flies back to the US.
Something as simple as vacuuming the carpet requires preparation in my house. Once the vacuuming begins, I have to adhere to some rules to prevent a meltdown. For example, I cannot turn the vacuum off and then on again. This is Against The Rules. I must also put the vacuum back where it belongs. Failure to do so it met with reprisals.
Second example: When my son takes off his shoes he always takes off his socks. The two are integral (in his mind) and wearing one without the other is tantamount to blasphemy. The upside is we always know where his socks are. The downside is that all socks that are not put away end up in shoes. I often attempt to sort laundry in his presence which leads to thefts of any unpaired socks in the basket. He makes a beeline for the closet and fills every available pair of shoes with single socks. It was rather amusing at first but now it's just frustrating. One more thing I either have to fight with him about or wait until he's gone to bed to do.
One of the most frightening things about autism is that most autistic people have no sense of danger (unless they learn from personal experience). My son has no conception of traffic, heights, sharp objects, heat, etc. We have to know where our eldest is at all times. We frequently ask each other (and the other kids) where he is. We had an alarm system installed and every door/window on the first floor chimes when opened. This helps. When you hear the chime you know to do a headcount and fast. Once we couldn't find him for about 10 minutes. That cold fear that grips your chest and holds on tight until you find him is unbearable. (NB: We found him asleep in the coat closet.) In another instance he went AWOL from school and was found w/in 30 yards of Route 4. That's a day I never ever want to relive.
Similarly, he's fascinated by steam. This isn't a problem in the shower or when you open the dishwasher but we did have a problem with the iron. He does have a long memory so he's no great fan of the iron now. If it's on and makes that steaming noise he may get upset and start making a noise to let me know he's unhappy. Sometimes he will try to physically keep others away from what he perceives to be danger.
The best part of life with an Autistic child? Hard to say. One is that it has made me a better person. I say that with all humility. I have a long way to go but this experience has made me far more patient and compassionate than ever. I'll cop to a high degree of cynicism and impatience with others before this. Now I'm much more forgiving. "There but for the Grace of God" is a frequent internal refrain.
Second; every achievement is a huge victory. Something as simple as trying a new food or activity is on par with your child graduating from College.
Third, it has made my wife and I closer than ever. She is the only person who truly understands me and my life. I can confide in her with my fears, frustrations and yes, hopes and she understands. Completely. With divorce rates for parents with autistic children around 80% this is no small thing. Early on we decided that if we didn't pull together, we were going to pull apart. It is a very rocky road and if you're not in a strong relationship you're going to have a very difficult time making it through.
That said, very, very few people understand my life and how it works. That is, things are often so radically different it defies explanation. Even with our own families I frequently have to explain (or try to) why some things are the way they are or why they are simply not possible.
One huge stumbling block is when people fail to realize the importance of Routine and Structure. I capitalize these two because they are the primary drivers for people with Autism. Without them, my son cannot function. Literally, cannot function. The best description I've heard is the allegory of Flying To Holland. Imagine you book a vacation to Holland. You contact your travel agent to get some brochures. You see the windmill, the tulips, the dykes and the wooden shoes. You pick your hotel after careful consideration. You read up on local attractions and plan your itinerary. You even brush up on some Dutch phrases in hopes of impressing the locals. After weeks of planning and preparation your departure day is finally here. You're packed, rested and ready. You get on the plane and thumb through your guidebook. Then the plane lands. In Italy. You are booted off the plane and it flies back to the US.
Something as simple as vacuuming the carpet requires preparation in my house. Once the vacuuming begins, I have to adhere to some rules to prevent a meltdown. For example, I cannot turn the vacuum off and then on again. This is Against The Rules. I must also put the vacuum back where it belongs. Failure to do so it met with reprisals.
Second example: When my son takes off his shoes he always takes off his socks. The two are integral (in his mind) and wearing one without the other is tantamount to blasphemy. The upside is we always know where his socks are. The downside is that all socks that are not put away end up in shoes. I often attempt to sort laundry in his presence which leads to thefts of any unpaired socks in the basket. He makes a beeline for the closet and fills every available pair of shoes with single socks. It was rather amusing at first but now it's just frustrating. One more thing I either have to fight with him about or wait until he's gone to bed to do.
One of the most frightening things about autism is that most autistic people have no sense of danger (unless they learn from personal experience). My son has no conception of traffic, heights, sharp objects, heat, etc. We have to know where our eldest is at all times. We frequently ask each other (and the other kids) where he is. We had an alarm system installed and every door/window on the first floor chimes when opened. This helps. When you hear the chime you know to do a headcount and fast. Once we couldn't find him for about 10 minutes. That cold fear that grips your chest and holds on tight until you find him is unbearable. (NB: We found him asleep in the coat closet.) In another instance he went AWOL from school and was found w/in 30 yards of Route 4. That's a day I never ever want to relive.
Similarly, he's fascinated by steam. This isn't a problem in the shower or when you open the dishwasher but we did have a problem with the iron. He does have a long memory so he's no great fan of the iron now. If it's on and makes that steaming noise he may get upset and start making a noise to let me know he's unhappy. Sometimes he will try to physically keep others away from what he perceives to be danger.
The best part of life with an Autistic child? Hard to say. One is that it has made me a better person. I say that with all humility. I have a long way to go but this experience has made me far more patient and compassionate than ever. I'll cop to a high degree of cynicism and impatience with others before this. Now I'm much more forgiving. "There but for the Grace of God" is a frequent internal refrain.
Second; every achievement is a huge victory. Something as simple as trying a new food or activity is on par with your child graduating from College.
Third, it has made my wife and I closer than ever. She is the only person who truly understands me and my life. I can confide in her with my fears, frustrations and yes, hopes and she understands. Completely. With divorce rates for parents with autistic children around 80% this is no small thing. Early on we decided that if we didn't pull together, we were going to pull apart. It is a very rocky road and if you're not in a strong relationship you're going to have a very difficult time making it through.
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Best wishes