I'm sitting in the car with the Son of Never Stops Eating after church and before the weekly post-church grocery store run, trying to explain FICA and federal income tax paycheck deductions. He just got his first teenager job, and he's trying to figure out how much he needs to make in order to buy his latest Heart's Desire, which is something called an AT-AP Walker. He's also going through a little pre-employment angst; he's worried that he will make a mistake his first day of work, or that he won't get along with his co-workers.
When The College Student got her first job, she did everything on her own. I think I might have told her to take zero deductions on the W-2 form. For the Son of Never Stops Eating, a little more assistance was required; for example, I had to explain the question "Are you legal to work in the United States?" and I also had to call his life planner, because planning for special needs issues is beyond complicated and I'd rather get bitten by a venomous snake than do my son's special needs life planning without professional guidance. I had to make sure that (1) it was OK for him to work over the summer, and (2) find out how much I could allow him to make and not risk losing eligibility for SSI/SSDI at 18, because I need him to eventually be on Medicare so that I know he will have health insurance. Then I had to explain all the answers to his prospective boss.
That is the thing about parenting a special needs about to be young adult- my mind is constantly working through scenarios: What will he do after high school? Where will he eventually live? How will he get around? What kind of work will he do? How will we keep track of his earnings so we don't cross the line and get kicked off all the programs he's going to need? Should we obtain guardianship? I explain all this to people who don't have special needs kids and sometimes I can tell, while they're nodding sympathetically, what they're really thinking is "I'm so glad that's you and not me".
Here is what I have come to realize, after years of following special needs and autism issues: People care about people with autism and intellectual disability, especially little kids. Who doesn't love little kids? Teenagers and adults, maybe not so much- they're big, and sometimes they don't really act like adults, and they do and say strange or even socially inappropriate things and people aren't usually sure how to respond to all that. Actually, I should say this: people care, until they realize that really caring involves more than just platitudes- it involves resources. Like, you know, money. Then it's time for "Well, you're such a great mom; that's why God gave you such a special son".
The Son of Never Stops Eating is a great kid. He filled out (with spelling help) his own job application and aced an interview after practicing with his life skills teacher at school. He is a great artist. He loves hamsters and going to church and talking about his Legos to anyone who shows interest. He can identify more birds than most Americans. He loves chocolate chip pancakes on Saturday mornings with the local Breakfast Club, which has become his second family. However, some things throw him for a loop: FICA taxes, spam phone calls and texts on his cell phone, questions from cashiers about whether or not he wants to donate to a charity, whether or not he's legal to work, what his disability really means for him. I want him to be as independent as he possibly can, and our family has worked tirelessly towards that goal. I also know that he will need help making independence happen.
What our society seems to not quite get yet, or gets but doesn't want to follow through on, is that real help requires actual funding and work. Schools need more funding to provide more educators, like the teachers and classroom aides that the Son of Never Stops Eating has been fortunate to have, and resources for those teachers to do their jobs. Families need help with respite care, with paying for therapy, with planning for their child's future. Adults need help with job training and coaching, finding a safe and affordable place to live with the limited resources many have, with transportation, with making social connections, with navigating the complicated work of being an adult in 21st century America. It is an absolute shame that in a state that claims to place a high priority on "family values", the Son of Never Stops Eating has been on waiting lists to be evaluated for services since 2009.
Early on in my own autism mom journey, I thought that making people aware would be enough, that people not directly affected by autism or intellectual disability would bring that awareness into their worldview and act accordingly. I no longer think this. Now I realize that until our society accepts, embraces, and acts on the idea that all people deserve to live a life with dignity, with access to human needs like meaningful work and a clean, safe place to live and access to medical care, nothing much will change, and while I'd like to say I see that change happening, I can't. Until it does, I will keep doing what I do, just like so many other parents in my situation- working through a system that is seemingly purposefully designed to keep people from getting what they need to accomplish what every parent wants for a child- a good life.
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