From the time our son was born we thought that if we could manage the needs associated with his specific diagnoses, we’d be able to get a lot of things figured out. And for a while, we did.
Cerebral Palsy (CP) is linear in some sense. It’s neurological and muscular. If you provide the body with the tools it needs to operate within the context of its abilities–using augmentative devices, wheelchairs, orthotics, etc.–then the child is unleashed. Plain and simple.
But in May, our son was diagnosed with autism. This changed everything. Mind you, it changed nothing for our son. A diagnosis for him is just words and phrases that can describe him to other people who don't know him. He didn't change at all. He’s still the same wonderfully delightful kid he’s always been.
But it changed the plan for us significantly. Now it wasn't just about muscular issues that we needed to overcome. Now we had to process through neuro-cognitive issues. We had a sense of how the body should work, but now we had to figure out how my son’s mind works. We had to learn how we could operate within those contexts to teach him things.
It took us a while to come to terms with his CP diagnosis. And now it has been the same for his autism diagnosis. We have a few families we follow on Facebook whose children have CP. We always looked at them as a possible road map for our son’s journey. But now it’s totally different.
We don't really spend time thinking about what life would be like if my son were not disabled. That’s just not a mental exercise that we like to go through. But we have talked a couple of times about what life would be like if his diagnosis had not changed. How different and beautifully complex the autism diagnosis makes every single thing.
But all that being said, this is an “us” issue, not a “him” issue. The most difficult part of parenting a child with disabilities isn’t the disability itself. It’s handling the ambiguity of it all. It’s creating a roadmap where there is none.
And maybe, just maybe, someone will someday look at our roadmap and use it as a plan for managing their own experience.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.