One Of THOSE Parents

When I was a resident I would see parents of severely disabled kids come through our clinics. Wheelchairs or walkers. Or severely MR (that's what we called it then, instead of ID.). I'm sure some of those kids had autism, even though that word wasn't really on my radar then.  But I never really wondered about their personal lives. How were their marriages?  How often did/could they have sex?  Did they ever get a weekend alone?  Did they have friends?  Did they have friends that 'got it?'. How did they handle thoughts and worries about the future?  Did they ever wonder if they would have a life that didn't involve changing diapers and feeding tubes and fighting the government for new wheelchairs and appropriate placements?  How much guilt did they have about their inability to fix things? Or for their part in causing their child's disability?  How many 'What ifs' did they have?  How did they handle ignorant schmucks like me who didn't have a clue about them?

As part of our Developmental rotation, we had to visit the secretary of the department and her daughter. Her daughter had severe CP with microcephaly and feeding disorders after a stroke around the time of birth. Her daughter had seemed normal for the first several months but then had missed major milestones. They took her to several neurologists until one told her bluntly "She's missing half of her brain. She'll never do much." I knew I didn't want to become anything like that guy. 

Unwillingly to deal with it, the baby daddy left.  And that was it. Now her life revolved around her child. She met a wonderful guy who accepted her daughter. Ran with her in her wheelchair. Built her equipment. But later they divorced because he simply could not accept how much of mom's life revolved around her child. It just became too much-that little bit she could give him. So they split. 

When we visited her home, I remember Sam was about 10 months. Crawling. Into everything. He kept eating the dog's food. 

2 years later, when her boss diagnosed Sam with autism, I couldn't help but think about that visit. How much would Sam develop?  Was that dog food a sign that he had autism that we missed?  How much of my life would resemble hers?

Now we have 3 on spectrum. Sam is 15. A lot of water has shot over the falls. 

And I am a parent of children with varying levels of disabilities. One of whom is considered severely disabled. Autism with behavioral disturbance. Would test ID if we ever bothered to get him tested. Probably profoundly because of his difficulties with testing. Maybe not. But the testing would almost certainly be another knife in my heart, even if untrue. 

And we deal with medical professionals who, even if they have tons of knowledge and experience, don't really 'get it.' Who only see a tiny fraction of who we are, and what we deal with. Certainly they are much better and knowledgable people than that ignorant, wet-behind-the-ears resident I was 16 years ago. 

They gently try to move us past the 'What ifs' we have. 

But one thing they don't know is that only time and information can tell us 'What if.'  And some of those 'what ifs' can only be answered after a lifetime. 


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