I’m not looking for life to be easy. I’m not looking for anything to be handed to me either. What I would very much appreciate is a level playing field. Life as a full-time caregiver to four people with special needs is rewarding, challenging, never dull and absolutely exhausting.
As an Autism and Special Needs parent, there are things I have to worry about constantly, that won’t even show up on most others radar. Each one of these worries weighs heavy and keeps me up at night because my brain is continually trying to find solutions to the many problems facing my family.
There are so many things I wish I could change about my life, but my wife and kids aren’t one of them. Sure, I’d take away their pain and life-threatening health conditions but not who they are. Of course they aren’t perfect but neither I and we make a great team.
Every day of my life is spent trying to overcome countless obstacles. I do my best to meet the unique, challenging and continuously changing needs of my family and with any luck, make some forward progress. I’m not complaining about having to problem solve because that’s part of life and to be completely honest; I enjoy solving problems. I just wish I didn’t always have to travel uphill for everything. It would be fantastic if I could simply take on some of the more difficult challenges while standing on a flat, level surface.
Even the more mundane, everyday things like straightening up and organizing the house ends up being an exercise in futility.
I’ve been thinking about all of these things a lot lately and decided I’d write down what my perfect day would be like. It’s pretty straightforward for me.
I want to get up in the morning after a restful nights sleep to everyone being healthy and pain-free. I would get the kids ready for school without any significant Autism related issues. I’d go walking on the way home because it puts me in a better place to take on the rest of the day. It’d be great to get some work done, which amounts to writing, recording and working on advertising projects with clients.
I’d love to make some progress on the homefront. It’d be amazing to be able to retrieve the kids from school and bring them home to a better situation than we were in prior to them leaving in the morning.
Dinner would be cooked one time and everyone would be happy. It would be perfectly prepared, meeting or exceeding everyone diverse dietary and sensory needs.
There wouldn’t be any battles over showers, baths or brushing teeth due in large part to sensory challenges and everyone would be able to fall asleep without any significant problems.
I would go to sleep at a decent hour and feel like I accomplished something. All my hard work would have paid off because everyone was safe, happy, and healthy. We’d be one step closer to moving into a safer neighborhood, where the kids could play outside and we could finally replace our car.
That would be my perfect, average day. It’ll never happen, and that’s okay because we keep making the best out what we are currently blessed with.
Our time will come. Someday, all the hard work will pay off, and my family will reap the rewards.
Until then, I will continue to fight my uphill battles, and do the best I can.
One of the things I accepted very early on is that my best is never going to be enough. It’s no ones fault, it’s merely the reality we live in, and that’s okay.