This all started after I found out that both of Jay’s private therapists use i-Pads during their sessions with him.
They are both seeing a tremendous response from him with it and recommend that we get him one for use at home. He’s using it to learn all kinds of things and with it, he’s writing and he’s touching pictures to communicate with them about what he wants.
It then took on a little speed because I’m a blog junkie and I keep reading post after post after post talking about how amazing technological devices have been for people’s children on the spectrum and how they have opened up a whole new world for them in terms of learning and socializing.
The final straw was when I took the advice of someone and went looking on-line for charitable organizations who help families of people with disabilities and saw that, based on our salaries, we didn’t qualify for anything that would have been helpful or useful to us.
We are not rich. Not by the stretch of anyone’s imagination.
We are also not poor. Not by the government’s definition.
What follows is a bit of a rant and I don’t know where it will end up. I don’t even know if this is the right place to vent about this stuff. You guys probably have zero interest in reading any of it. So I sincerely apologize in advance and if you want to click over to some other more interesting site and come back here tomorrow I won’t mind.
The system is stupid.
The system that does everything to keep poor people poor and does nothing to help those of us who are not living in squalor to do better.
Don’t get me wrong … I don’t feel like I’m superior in any way to anyone else. I get the need for social programs. I think they are vital. I just wonder who decided that it’s OK for a family who makes $30,000/year less than we do a year to get hundreds of dollars per month in food stamps and to get free medical care and also a yearly allowance for assistive technology. They can also get subsidized housing and free child care. That’s a ton of bills that we have to pay out of our pocket that they do not have to pay. If said family keeps having more children, they will keep getting additional help. As far as I’m concerned (and I admit I may be wrong), they are basically now making more money than we are.
I’m not asking that the government pay my rent. I’m not asking that they buy my groceries. I will leave that for people who really do need it. I’m all for helping those who are going through a hard time. What I would like though, is a system that tries to help those who are trying to help themselves. I’d like a break with the medical bills and I’d like more resources in the school and I’d like maybe for someone to see that we need help every once in a while. I would like to not be excluded from certain things just because (on paper) we are not living below the poverty line. There is a lot we want to do for our son that we can’t because we can’t afford it. Not because we are buying expensive things or going on lavish vacations but because we are stretched thin as it is paying for the most basic of needs.
We’re stuck in the middle. With few options to wiggle out. Caught between the “haves” who can buy their children every imaginable help and the “have nots” who get it all for free.
We either need to make a ton more money (not likely) or 1 of us should quit our job and the other take a lower paying job so we can make less money. That way we can stay home and actually be available to run Jay here, there and everywhere as needed while collecting money and supplies from the govt. Financially we wouldn’t be any worse off.
Is this really their intent? To have a system that makes being less productive an attractive option for people?
(Unfortunately), that’s not who we are. We will continue to work hard and to do all we can with what we’ve got. We will find ways to enjoy each other. We will plow through a looming 2nd diagnosis. We will cheer on each bit of progress. We will know that our children are lucky to have us and we are to have them. We will be happy that we live in this country where despite my above rant, they are getting more than they would be getting had we lived in Jamaica or Trinidad (where we’re originally from). I will pray to God to make me less bitter and angry at a system that I think is failing my family. We will be OK.