“I don’t like it when you say ‘special needs’ or ‘developmental disabilities’ about me.”
“I’m sorry, I didn’t realize that.”
“It makes me feel like I’m incapable of doing things.”
“I’ll do my best not to use that terminology with you. What do you prefer that I say instead?”
After a moment of thought: “Say that I’m a person of limited means.”
*
As I write this, I am on day two of a lousy migraine. The boys and I have just finished getting over illnesses and dry throats due to two and a half weeks of the central heating system in our new apartment not working properly. The fan blew recycled air out of every vent in every room 24/7 for two and a half weeks. The technician had to make three trips here before it finally shut off, which was yesterday. My computer was not connecting to the internet for almost a week, which is bad because I do a lot of work online from home, and after spending an hour and a half on the phone with Dell’s tech support in India, it crashed completely and I couldn’t even work offline. Over three more hours and two more calls-to-India later, it was fixed. Apparently this occurred during the peak of Mercury in retrograde.
So yes, the next step in Neil’s transition to adulthood: we have moved into a 3-bedroom apartment, and everyone is pretty excited to have more space. I am happy that all of Neil’s stuff is confined to his new bedroom. Adam is happy not to have Neil’s captain’s bed sitting in the middle of his (Adam’s) room. And I’m sure Neil is particularly happy that no one is constantly tripping over him or his things. (As an aside, I’m also glad that the light never goes out in the middle of my shower anymore.)
Incidentally, three days ago Neil turned 19. He received a couple of checks for his birthday, and yesterday we went to the bank to deposit them. I have taken him to the bank several times before in the past three years to do this very thing. We walked over to the counter where all the deposit and withdrawal slips are, and I said, “Okay, pretend I’m not here. Just do all the things we’ve practiced before, and ask me if you have any questions.” He stood there, a blank look on his face. In a defensive tone he said, “How am I supposed to remember what to do?!” I calmly reminded him that we’d done all of this many times before. “I bet you didn’t have to do this when you were 19!”
I refrained from telling him that when I was 19, I had my own apartment, a car, a checking account, a credit card, paid my own bills, and college tuition. I simply said Yes, I did, and patiently walked him through the steps for perhaps the ninth time. And so it goes.
What’s next for Neil? As soon as I get rid of this migraine, I will be signing him up for Goodwill’s GED program, and he will focus on that for however long it takes. He’s been getting out into the community by riding his bike on an almost daily basis and remembering to text me when he leaves the house and when he returns. We’re at about a 30% rate of him remembering on his own to take his medication twice a day, despite various methods of helping him to do it on his own. But, as in most situations with a person of limited means, one thing at a time.
*
I told him, gently, that the term “limited means” usually refers to a low financial status (and other things that I know he didn’t have in mind). “Oh,” he said. I assured him that I wanted to be respectful of his preference and suggested “differently abled,” which he vetoed. Finally, in frustration he asked, “Why is it so important to you?” I didn’t have an answer for him, other than what I had already said about being respectful. And, just like that, he had made his preference known.
Tanya,
Thanks for sharing, again. You’re doing an amazing job! Let me know how/if I can help.
Mike
Sorry to hear about your literal and figurative headaches. Moving is always a bit problematic, but that’s a bit much! I hope Neil finds banking procedures easier in the future. As always, good luck!
You won’t mind if I giggle, will you? Only out of I-get-it-ness!
Love. To both of you.
I’m so sorry for your headaches and grateful that you’d take the time to catch us up on the goings-on in your part of the world! I admire your patience with Neil and marvel at just how very UNLIMITED he is.
I realize that that comment came off sounding weird — like some kind of retort about your parenting! What I meant it to be was a comment about how unlimited Neil’s reasoning is and how he is so NOT a person of limited means!
good luck with this move, hope the extra space helps give you guys a little more elbow room and comfort. and thx for this post, always thinking about you guys, take care Tanya.
Someone should invent a new word. I kind of know how it feels because, although my mom would never say the words “special needs” in public about me (she’s not trying to be sensitive… she’s embarrassed… :P) I sometimes feel like I need to explain about myself in order to advocate for myself sometimes… but as soon as you do say the words “autism” or “special needs” or “disability,” it feels like you just put an arrow over your head with a sign saying, “DIFFERENT!” I notice some people will automatically start treating me strangely or acting nervous around me when I say it. There needs to be a nice, easy word, that means something like, “I have a difficult time with certain things and I may require assistance, or I might not need any assistance at all but I may just look a little nervous or awkward, and I swear I’m not about to rob your bank.”
How wonderful your boy is . I know we’re in different ‘places’ but it’s great when our kids voice their feelings/fears. It’s not often we get such helpful insights and it’s so important that we hear and respond to them, just like you did.
Delighted to hear about the new apartment and hope you feel better soon 🙂
xx Jazzy
Oof, sounds like a lot of transition for all of you. So glad you were able to get some more space. One day at a time, one step/goal at a time = progress, right? I think of you all often. xo
you are such an amazing writer
I love the words he chose though they don’t quite mean the same thing “Limited means”
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