A few months back JJ’s insurance offered to apply for disability benefits on his behalf due to his spastic hemiparesis. We agreed to “give it a shot” though I hoped he would get denied. Kasper was more willing to apply than I would have liked. I never would have applied on my own. I may lean to the liberal left politically but when it comes to passing around checks, I suddenly become fiscally conservative. I get disability, I rely on more government programs than I would have ever wanted but that doesn’t mean I can’t agree that some of the loose corners in these programs need to be tucked in a bit tighter. I feel like if he was approved the system would have failed. He’s not disabled, he’s not working [yet] and he’s super smart; his delays are physical. Why would he need a check for not keeping up on the playground?
A good mother will literally love her child no matter what. Gay, straight, ugly, fat, beautiful..Republican, we love our children. With or without disabilities, our children are the stars in our skies, the bright dots in our darkness that keep us looking up and beyond what we know in hopes of something better. I know my son is not disabled. For a government agency and a team of doctors to determine that my child is disabled would have been confirmation of a disability I feel doesn’t exist. It would have felt unwarranted, wrong and depressing. And I want to explain that I’m not saying this in a “I don’t want a disabled child” kind of way because that’s not it at all. I wouldn’t be at all ashamed if that were the case but the little dude is seriously not disabled so I wasn’t ever sure why anyone would apply for disability for him.
I feel being legally declared disabled creates a negative atmosphere in your mind. I remember in rehab I didn’t want to apply even though I had yet to move any part of my left side when they already began the process. I just felt like it would create a type of dependence or maybe it would deter me from pushing hard for a greater recovery and in a way I think that may be a small factor in the reasoning behind my lazy approach to controlling my recovery. Granted, JJ is only three and his “condition” is not likely to worsen, like, ever; but, I feel my fear of his becoming somewhat dependent on the phrase “I’m disabled” is legitimate. I use that phrase a lot. It’s like my go-to excuse for everything and I hate myself a little inside every time it spills out of my mouth – even when my disabilities really are what holds me back in a particular situation. I don’t want that for JJ and I felt like getting tagged DISABLED would have somehow given him a ticket to skip all of those difficult things everyone should face in life, like gym class in junior high.
When I got his denial letter I was so happy. In my case, I actually need the disability because I need not only the check but the insurance. I have the whole seizure and hemiplegia thing going on and whatever else so obviously I need meds and therapy and check ups with neurologists every so often. I live in a state that rejected the ACA’s expansion of Medicaid so I would not get the things I need without being declared disabled, allowing me to receive medicare benefits. For my son, he qualifies for Medicaid even without the ACA because we are your average poor white family (even before my stroke). He will receive more therapy than I will just because of Medicaid and no disability letter, even though I am far more disabled than he is. They will help him learn how to avoid creating a worse situation for his physical future and how to work with his limitations; strengthening them rather than giving into them. Eventually, it will barely be noticeable that he ever had a non-disabling disability.
I am happy with this outcome. Finally, I have my petty proof that the system is not a complete failure. I wouldn’t be one of those jackasses that “knows someone” who was or wasn’t able to fraud the government if ever I’m in an online debate with some idiot. They are pretty clear about why he was denied and I don’t really see a way around it. Brain scans, years of therapy (for a 3 year-old), assistive devices and evidence of physical and other delays related to conditions are still not enough to receive a check for disability. Maybe if I was lazy enough to actually want that check I could probably, maybe, get it?
Either way, he’s not disabled. He runs funny, he can’t always hold onto his cups and he has yet to really jump in his three years of life but he’s not disabled. There’s nothing to confirm. I’m glad they had to do physical, speech and psych evals. He has…issues, things that did and do create delays and those limitations but none of those things are disabling. So what is it then? I don’t know what to call “it.” If it’s not a “disability” then how do you explain it? Why do I need to label everything? So it’s easier to Google? Seems so pointless…
My son has a non-disabling disability. That doesn’t even make any sense, does it?