The hand you are dealt sucks

Every day this week I’ve come home to Blake crying or my wife looking like she has been through hell.

Here we are, trying to teach an autistic kid who really has to try very hard to keep his Cs (85 is a C btw at his school) in general Ed, but is too advanced to be placed in a self contained classroom.

I was just thinking the other day — firstly let me dispense with the whole “autism is a blessing” bullshit, it isn’t. That doesn’t mean I am blaming Blake or don’t love him, I just wish he didn’t have to face the world and it’s definition of “normal” when his brain is wired completely differently. I don’t want to change my child for my sake — I only know him how he is, but how I wish things could have been different. Of all the places on the spectrum to land, he is the “middle”. Not Aspergers, not non-verbal — he is right in the middle. Our official diagnosis was PDD NOS which essentially means he exhibits typical and autistic traits with significant communication and social deficits.

Honestly if he was on either end of the spectrum things would be somewhat more direct. Aspergers kids don’t have it easy by any means, but academics are significantly easier I would think. If he was non verbal with classic autism we would know our path. Our path is now one where he has the potential to continue progressing at grade level but it is literally wearing us out.

My wife and I probably look 5–7 years older than we are. Maybe 10–15 lbs overweight and constantly tired. For families with multiple children on the spectrum, I can’t even imagine, even more so those with kids in the “middle” like Blakey.

I’ve almost come to the realization that my life turned out to be nothing like I expected. I rarely have moments of pure happiness — I am desperately searching for all the positive posts which say “learn to accept things that are not meant for you and live you life and be happy with what cards you were dealt”.

Our cards suck. I fee extremely guilty and ashamed even writing this. There was supposed to be more to life than constantly fighting with insurance companies, IEP meetings and teachers that don’t believe in your child. There is more to life than constantly having to drive a certain route to go to school otherwise your kid will have a meltdown. There is more to life than having to go to the same restaurant every Sunday at the exact same time or your child is inconsolable.

It’s so easy to say — just go with the flow, things will be okay. You know what, it’s hard, it drains you emotionally and physically and the only outlet you have is to own an article like this and go on living your Groundhog Day life.

Maybe tomorrow will be better. I see no hope today.

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