Thursday, January 24, 2019

It is hard to stop over-parenting your child with disabilities

Max is counting down the days till he sleeps over at his school this weekend. Tuesday, after I got home from work, I packed up all his stuff so I could send it in with him on Wednesday, as the teacher in charge requested, and left the bag sitting by our front door. I was on the train to work Wednesday morning when I remembered that I hadn't told our sitter that it needed to go on the bus with Max. The mom guilt demon started stabbing at my soul.

"By any chance, did Max tell you he had to take that big blue bag to school?" I texted her. 

"That was the first thing he told me when he walked in," she responded. "He couldn't hold back his excitement."

Ah. That's when it occurred to me: Why hadn't I told Max to remember to take it to school? Because I was on autopilot and did what I've done for most of his life: I took care of things for him. Except this time I messed up and didn't, and Max handled it just fine on his own.

Letting Max be responsible for his needs is something I have to work at. After all, I expect his younger sister to be responsible for stuff in her life. A few times in the past couple of months Sabrina has forgotten her basketball jersey or her basketball shoes, despite the fact we've told her to get her stuff together the night before, and I've grumbled about Dave or me having to drive things over to school. I finally said that if it happened again nobody would be bringing her stuff.

Max has plenty of responsibility in him. He makes sure to do his homework and if it's Sunday evening and he hasn't yet gotten to it, he reminds us. Max looks out for Ben, cautioning him when he's about to do something he shouldn't (like climbing on our kitchen table so he can reach the sink f and squirt water everywhere with the pull-down faucet). He recently took control of our morning Sabrina-you've-gotta-wake-up drama. A couple of times, Max has reminded an evening sitter that he needs to take his anti-seizure meds. 

One truth about raising children with disabilities is that even as they make progress, sometimes you as a parent don't. Maybe you're too used to handling things, why I took it upon myself to make sure Max's bag got to school. Or maybe, deep down, we are scared to let go—vestiges of a time when doing everything for our children gave us a sense of control that helped offset the fact they were missing typical developmental milestones.

I'm still doing as much as I can for Max. But he's not that helpless baby anymore, and I need to conscientiously treat him like the teen that he is. Besides, it'll be nice to let go of some to-dos. 


  1. If it helps I have seen the damage done when parents don't let go. We known a young adult with a mild intellectual disability whose parents never pushed him and did everything for him. Now they can't get him to do anything besides play video games! He is capable, thoughtful, kind, funny. He could definetely live in a supported apartment and be working an actual job with some support as he has pretty decent social skills and is able to read, write, and do math. Instead he lives at home and spends a brief time each week in a job training program well below his cababilities. His parents now want him to be more independent but he has so much learned helplessness from the first 18 years that it's very hard. He is unhappy and his parents are miserable. He has no friends his around his own age or ability because he was always put in programs for people with much higher support needs as his parents could not handle the idea of him failing or struggling. He can hold a full conversation and take care of his own basic needs and ends up
    in groups of people who can't speak/use AAC. He's very lonely. They placed him in a group home for awhile but he was miserable there despite it being one with nice staff as again there was literally no resident there he could talk to/hang out with/go places with and it was set up to be a total care home. After two years they just gave in and brought him back to live with them. Sometimes the "help" we think we give kids is actually harm. Well intentioned and loving but harm non the less. I'm not sure what will happen to this young man but I think the "help" he got when younger is as disabling as his intellectual disability.

    From what I've seen you aren't doing that with Max. You've recognized a lot earlier than our friends the need to foster independence and it seems like Max is a bit more assertive than the young man we know in telling you when he is capable of doing something or wanting to tey something. That's a wonderful skill for him to have! I'm sure having a sibling close in age has helped Max by giving him an example of what is possible. As someone who grew up with a dosability-It's okay to take risks. To let your kid fail sometimes or even get hurt. Better they learn who to cope with that while you are there to provide support than to be thrown into the deep end later. Of course I don't know Max's specific abilities or desires but maybe as he gets older it would be possible to use some form of video/emergecy alert system to allow him to stay home without a sitter? Being able to work up to staying alone for say 24 hours or even just during the day will open up a lot more living situations for him when he's an adult and "training wheels" could help that process.


    1. Oh, that is a sad story. I hope these parents are able to find ways to encourage independence—at 18, it just doesn't seem like it is too late. Tough love may be the only way. Yes, we know just how important it is to encourage Max's independence, but we can't take all the credit because he wants it, too! Max staying alone is definitely something on the horizon, with some sort of emergency alert, but preparing food for himself is something we need to work more on.

  2. I have the opposite issue. I've 2 autistic kids, 8 and 13. The oldest I've always pushed to be independent and make choices where appropriate.
    She's off the rails and has mental health issues, apparently I put too much pressure on her and should do more for her rather than teaching her how...
    Yet Mr 8 is working on mathematics 4 years ahead of his age and is very responsible and grown up.

    I think it's always a balancing act.

    1. Without knowing more, Jay, it just doesn't seem like you should entirely blame yourself for her mental health issues—so many possible causes for that. Yes, it's always a balancing act, but also trying to do the best we can and also trying not to beat ourselves up for our children's challenges.

  3. Only once in my daughter's high school time did she miss the bus. The van driver waited the requisite 5 min then took off. At first I was upset (was a special needs van, didn't the driver know that transitions were hard?) but took me about an hour to realize that the same consequences need to apply as with any other kid (although on the regular high school run the bus doesn't even stop if you are not on the corner, let alone wait 5 min!). My daughter was outraged beyond belief and had a spectacular meltdown. But for the ENTIRE rest of high school she was on the porch before the bus arrived. Every.Single.Day.


Thanks for sharing!

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