Trying to find "Normal"
What is "normal?"
With a disabled child, normal takes on a new meaning. When Alan was young, I absolutely refused to give up any "normal" activities just because we had a child with developmental disabilities. Let me say that I grew up in a home where we were always told the sky was the limit. My sister had some learning disabilities, some physical challenges, but as a family, we forged ahead. My husband had been raised the same way. In our minds, there was no limit to what we could do - what we SHOULD do. The truth is, idealism got us only so far. The result was pure misery.
In those early days, I imagined that, if accounts were written of us, we would be heralded as the family that "never let disability slow them down." Gradually, however, the push to be that normal family took its toll. Two events gave us the insight we needed to stop the mad rush toward failure.
First, we went on a three day, two night camping trip with our church. It was a large gathering, and there were structured activities for the children. Alan could not attend those structured activities without hurting himself or someone else. The venue was too closed in for his taste, and he was never able to control himself in a large group - the stimulation was too much. Suffice it to say that at the end of the three days, I was in tears, Alan was stressed to the point of rubbing holes in the skin of his legs, and my husband just wanted to go home.
Second, we were invited to eat dinner with a couple we had just met. They wanted all the kids to got to the basement to play. It was a bad idea. I knew it, my husband knew it, but we allowed ourselves to go along with it. Things were broken, kids were in tears. We weren't asked back.
In a moment of clarity, both my husband and I said "No more!" We began to make our own path.
There is an amazing amount of peace and safety in allowing limits to what you will do as a family. We formed friendships with two couples who understood our unique limits, and were willing to socialize within those frameworks. We are still close friends today, and those four people understand Alan as well as we do. We found a trusted sitter, and let her in on all the ins and outs of caring for Alan, so that gave us some freedom.
As far as vacations, carefully choosing activities helped us to have wonderful times together, and gave us stress free times with Alan. A trip across the country on a route Alan chose (he loves maps) took us on a tour of the southwest. We spent an afternoon at Arches National Park, where Alan explored for hours. The Grand Canyon was a relaxing day trip. We ate at a wonderful little diner in Beaver, Utah called Arshell's. Disneyland, oddly, was just right. We rode the Pirates of the Caribbean ride six times, singing "Yo ho, yo ho, a pirate's life for me!" until we were hoarse. Alan met all the cartoon buddies he had admired over the years, grinning from ear to ear for two days straight. A visit to Sea World gave us a chance to touch starfish and dolphins. We were a little family of three, and it worked best that way.
Did we want things to be "normal"? Of course. But the joy of finding our own kind of normal was good enough.
With a disabled child, normal takes on a new meaning. When Alan was young, I absolutely refused to give up any "normal" activities just because we had a child with developmental disabilities. Let me say that I grew up in a home where we were always told the sky was the limit. My sister had some learning disabilities, some physical challenges, but as a family, we forged ahead. My husband had been raised the same way. In our minds, there was no limit to what we could do - what we SHOULD do. The truth is, idealism got us only so far. The result was pure misery.
In those early days, I imagined that, if accounts were written of us, we would be heralded as the family that "never let disability slow them down." Gradually, however, the push to be that normal family took its toll. Two events gave us the insight we needed to stop the mad rush toward failure.
First, we went on a three day, two night camping trip with our church. It was a large gathering, and there were structured activities for the children. Alan could not attend those structured activities without hurting himself or someone else. The venue was too closed in for his taste, and he was never able to control himself in a large group - the stimulation was too much. Suffice it to say that at the end of the three days, I was in tears, Alan was stressed to the point of rubbing holes in the skin of his legs, and my husband just wanted to go home.
Second, we were invited to eat dinner with a couple we had just met. They wanted all the kids to got to the basement to play. It was a bad idea. I knew it, my husband knew it, but we allowed ourselves to go along with it. Things were broken, kids were in tears. We weren't asked back.
In a moment of clarity, both my husband and I said "No more!" We began to make our own path.
There is an amazing amount of peace and safety in allowing limits to what you will do as a family. We formed friendships with two couples who understood our unique limits, and were willing to socialize within those frameworks. We are still close friends today, and those four people understand Alan as well as we do. We found a trusted sitter, and let her in on all the ins and outs of caring for Alan, so that gave us some freedom.
As far as vacations, carefully choosing activities helped us to have wonderful times together, and gave us stress free times with Alan. A trip across the country on a route Alan chose (he loves maps) took us on a tour of the southwest. We spent an afternoon at Arches National Park, where Alan explored for hours. The Grand Canyon was a relaxing day trip. We ate at a wonderful little diner in Beaver, Utah called Arshell's. Disneyland, oddly, was just right. We rode the Pirates of the Caribbean ride six times, singing "Yo ho, yo ho, a pirate's life for me!" until we were hoarse. Alan met all the cartoon buddies he had admired over the years, grinning from ear to ear for two days straight. A visit to Sea World gave us a chance to touch starfish and dolphins. We were a little family of three, and it worked best that way.
Did we want things to be "normal"? Of course. But the joy of finding our own kind of normal was good enough.
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