Everyone has bad days. It’s just the nature of life. Sometimes I wake up and I can almost just sense that the day will not be on my side. The weather is bad, or the mood in our home is unfriendly (plenty of waking up on the wrong side of the bed in our house). As a special needs parent, there are plenty of rough days. Rocky roads are just part of the package. But it rarely seems to be these overall moody days that cause my day to feel ruined, but instead I find that it comes at its worst on the days I am least expecting it.
Damion is on the spectrum and we are no stranger to his meltdowns. We are fortunate that they are not as bad as they used to be. He no longer gets violent; he no longer does self-harm. We have had some broken items in our home but even those such occasions are very rare. Plenty of these meltdown days come from pushing him on things that are not his favorite, and some are from change overall. I am ready for the small meltdowns. Being prepared for them makes them seem easier to handle somehow. These are not my truly bad days. These days are just part of my reality.
My truly bad days come from a different place. A place of comparison. A look at the bigger picture. They say you should never compare your kid to another. But then the world seems to give you nothing but comparisons to go off of. Testing, understanding, communicating all fall on a comparison chart with how they match up to their peers. I know that he knows more than he is able to verbally communicate. I know that he is exceptional in many ways that can never be shown on a test. Measuring comprehension is hard when communication is lacking and how can you move forward if you don’t know if he understands the basics?
Having an autistic child has really opened my eyes to how much work it is when basic skills don’t come naturally
Having an autistic child has really opened my eyes to how much work it is when basic skills don’t come naturally. When you need help with feeding, dressing, washing, talking, etc., it makes it hard to find the time for everything else. How are you supposed to find time for reading and math when your child still struggles with the basics of holding a pencil? We do our best to just push through it all.
I am a pusher. I push hard for progress. I feel like I never really stop pushing. Some days it feels like there is no task that doesn’t seem like some type of work. When your child has deficits on all the basic skills you find yourself constantly pushing because there is no other alternative to reach these goals. Everything feels like work. Everything feels like a therapy. But that is ok because progress is important. You work so hard on all these things and you find happiness in the small successes. I have my head down pushing so hard for progress, so fixated on what is right in front of me. But then I look up.
Something is done or said that takes my focus off our current goals and onto a comparison of him with his peers. I look around and am hit off-guard. Blindsided by reality again, something that I should be aware of but still feels unexpected. So focused on specific goals and minor progress, I forget about where we actually are. Coming to terms with just how blissfully unaware I have been about how far behind everyone he really is. It’s like you have been working so hard on teaching him to ride a bike that you don’t realize that everyone else is already driving cars. You realize that for every small step forward he takes you look around and see that he is another two steps behind. The goal posts just seem to keep moving faster and faster and catching up starts to feel unrealistic. It takes my breath away to think about all the things we still have to do. He has come so far already, but he still has such a long road ahead to catch up. Ignorance really is bliss and unfortunately today I am wise to just how far behind he still stands.