I want my child to be ok.
I thought about this when he was first diagnosed with a condition that had no cure. If “curing” him is not possible, let’s shoot for quality of life.
I’m not certain, but I see this as a turning point for most parents. Do you want to fix your kid or do you accept what is and give him his best life? I chose the latter and it has made life better for my family.
I have at least one encounter every year that feels like slap in the face. It is the nature of parenting a child on the autism spectrum. It doesn’t feel good to be told what your child isn’t doing or to have their struggles in black and white, knowing that no intervention will completely alleviate those struggles. That is hard to swallow. I’ve met parents who are unwilling to accept it. If they make it to a diagnosis, they have unrealistic expectations of everyone, including their kid. Or if they don’t have a diagnosis they focus on obtaining one because their kid isn’t a perfect student. This obsession with exceptionality leads to a negative head space. It isn’t healthy and ultimately makes everything more difficult.
My advice is to accepting what is. Be ok with where you are right now and not constantly focused on getting somewhere else or wishing things were different. Of course I want him to develop all the skills he can. Yes. But he is a whole wonderful person as he is. He is a blessing. We will do the most to help him, but we will not ruin everything today trying to get to tomorrow. We will enjoy this moment. That means not ruling his schedule with an iron fist. That means allowing for days and weeks when school isn’t as intense as it could be. That means being ok with deviation from his IEP occasionally. It means vegging out on video games for a couple of hours sometimes. It means that people aren’t perfect and there has to be room for others to get things wrong sometimes. I’m wrong all the time. Why should anyone else be any different?
I am his advocate. I do not treat my advocacy like a war.
The way we approach his interventions is not adversarial. We are not looking to fight. We also aren’t asking for the world because we recognize that what we can do without will likely help another kid. We start every conversation with the assumption that everyone wants what is best for our kid.
I have no problem escalating an issue, I have no problem communicating my disagreement or challenging authority. I can stand up for my child any time it is necessary. We do what we must. But I do not believe in asking teachers or administrators to cure my child. To fix him. I do not ask expect them to be perfect. When I manage my expectations, I’m rarely disappointed. When I accept my child as he is, the urgency to dot every I and cross every T lessens, and our quality of life is better for it.