In doing my best to prepare for Gabriel to be here, I’ve learned a tremendous amount about services the state and federal government can offer. Funny how my preparations for a child without special needs would be so different…or maybe “limited” would be the better word. They would be set to his nursery aaaaand a birthing class?? I’m not sure, honestly. Maybe it would stop at his nursery. But not for Gabriel, he has already broadened my often times selfish scope.
I’ve been trying to read about and learn how to prepare for his future, as in after he turns 18 and even beyond that. Social security, for example, is designed (at least a part of the social security program) for people with disabilities. They can receive payments and benefits depending on their disability and if they can be gainfully employed. Gabriel will immediately qualify for supplemental security income (which comes out of the general pool of federal tax monies), now I just need to figure out what my options are for putting that money away for him and his long term care.
I think the reality of Gabriel having Down syndrome still creeps up on me unexpectedly. Prime example, in reading about SSI and who can qualify I came upon this sentence, “If you have confirmed non-mosaic Down syndrome, we consider you disabled from birth.” Yes, he has non-mosaic Down syndrome, but it’s the “disabled from birth” part that bothers me. There just seems to be so much indifference there. Is there any better way to word that sentence? I don’t know, and I don’t know what else I’m expecting to read. Gabriel is disabled, but that sentence almost makes me feel like I should have pity on him or that the view of people around him will be pity. I don’t want that for him. He has so much more to offer than what that sentence makes his life out to sound like.
Maybe what’s really bothering me here is the expectation level…or the lack of any expectation. I don’t want people around Gabriel who expect anything less than a bright, funny, loving, and easygoing kid. He’s gonna blow all of us away. I know he will.