Speaking for my teen and adult children

Large white appearing woman in a power wheelchair, small white appearing woman in a manual wheelchair, black appearing woman standing, white appearing teen boy standing, Latino appearing pregnant woman in a manual chair, and black appearing woman in a power chair all smiling for the camera on a bridge with fall colors in the background.

Carrie, Heather, Asiza, Anthony, Cinthia and Adrianne

A couple of weeks ago, the website called The Mighty,1 published a since-removed post called meltdown bingo.  The post was a pejorative “game” aimed to make light of children and adults experiencing sensory and emotional overload resulting in a meltdown. As some of my acquaintances pointed out, having a meltdown is not enjoyable for the person having the meltdown.  As a parent who has watched children go through meltdowns, it is also no fun for the family around a person having a meltdown.  Heck, I’ve had meltdowns myself, and they are no fun for me either (although I have more ability to temper my behavior than my kids do).

Since that time, the disability community has issued a sharp rebuke to The Mighty, with #CrippingtheMighty.  The Mighty is run by non-disabled people, is rich in inspiration porn, and contains an inordinate amount of material submitted by people who purport to speak for us.  Nothing about us without us is clearly not a principle held by The Mighty.2  A number of blogs and posts have surfaced from disabled people issuing a rebuke to parents of disabled children for speaking for their children.  A number of blogs and posts have surfaced from parents claiming they must speak for their children.  Missing from these posts is the perspective of disabled parents who have disabled children.

There are times when it is necessary to speak for one’s children, particularly young children.  There are times when it is necessary to speak for one’s adult children.  And there are many times when it is not appropriate to do so.  One of my adult children is non-speaking.  She has very limited communication.  There are positively times I need to advocate for her, and there are limited times when I do need to speak for her.  I have a teen who has limited speech, but good communication.  I rarely have to speak for her, but I frequently have to advocate for her voice to be heard.

All parents, particularly parents of disabled children need to remember these principles.

  1. Parenting is hard.  Regardless of disability status, parenting is hard.  For one kid, physical care is difficult, but the trade off is that I am not worrying at 3 am where my teenager is. For another teen, meltdowns are difficult, but the trade off is that I have a smart funny kid to join me in a game of cribbage. Some kids are hard all the time, disabled or not. A very bright child who is always on, and always asking questions and exploring the world is emotionally exhausting.  The athletic child who is at rehearsal from 4 am to 8 am, and 3 pm to 8 pm are physically exhausting for the parent. 3 Some parents do it alone, work double shifts then care for their kids.  That is physically and emotionally exhausting. There are disabled kids for whom parenting is physically and emotionally exhausting — all the time 24/7. We disabled adults need to remember that these parents are out there, and leave space for them to vent (but gently call them out for invading privacy).
  2. We all must teach our kids to advocate for themselves disabled or not.  This looks different for each kid.  For one adult daughter, I am over the moon when she makes choices about what she does during the day, but for the other, I am helping her learn to request her own employment accommodations.  My teens are expected to at least partially lead their own IEP meetings — yes, even the ones with limited speech. A non-disabled kid also learns self advocacy, because it is really bad when a parent calls up a boss and tells them little Nicole needs the day off.4  At the same time, I also let my kids advocate for themselves.  I don’t arrange play dates, but if asked, I will help make a phone call.
  3. We all must advocate for our kids from time to time. I was recently at a meeting for parents of high schoolers who are going on an expensive school trip.  I watched parents advocate to ensure their non-disabled teens have ample opportunities to fund raise for the trip. I often have to advocate for my kids.  Just last month I filed three Medicaid appeals, and two public benefit appeals for my adult kids.  I have testified at the legislature, filed lawsuits, and advocated for policy changes that benefit my kids (and myself). I have thrown a fit on my kids’ behalf when I see inaccessibility that prevents them from being included.  I have gone all mama bear when I have seen people mistreat my kids, just as parents of non-disabled kids do.
  4. We all need support.  All parents need support.  Parents of disabled kids are often geographically isolated, and sometimes socially isolated.  Support often comes online.  Just as the use of social media has become a central part of disability culture, the same is true for disabled parents. That I have been able to access PRIVATE online support groups for parents of disabled children have vastly improved our lives.  These groups have helped me learn to navigate public benefit systems, given me ideas to improve my parenting, and yes, even given me tips to manage toileting issues. They have connected me with other parents, advocates, friends and employment. The key is these groups are private.  Yes all people need to vent.  Sometimes
  5. All kids need privacy.  There is no reason why any parent should be taking a video of a meltdown and posting it online for public consumption.  I have seen parents provide private videos to get tips on managing a meltdown.  That is fine, but no reasonable person will dispute that meltdowns are difficult for all involved.  No one has to post a video of a meltdown to prove how disabled a particular person is, or to prove how difficult it is to be around someone having a meltdown.  No one needs to have a discussion of their child’s toileting for public consumption. There are ample opportunities to do that in private.  Don’t blog about toileting, but do ask your questions in a private support group. There are very differing philosophies about what to post online about children. Some people are prohibitionists, posting nothing about their children, others are very open and post a great deal.  My rule of thumb is to not post anything that would be inappropriate for a future employer to see.
  6. Occasionally some disabled people need someone to speak for them — occasionally, and with permission from the disabled person.  My teen who has difficult to understand speech does want me to speak for her at times, such as ordering food in a restaurant. She is a non-reader, and non-writer.  She asks me to help her update her Facebook page, but I never post for her. My adult daughter who has very limited communication needs me to speak for her to give biographical information, for example. She is unable to give her name, address, date of birth, etc.  She far more often needs me to interpret her non-speaking communication so that others understand her wants, needs, likes, an dislikes.  I often speak for her to complete social communication such as signing her name to a birthday card (but try to get her to sign as often as possible).  I help her maintain a Facebook page, mostly so friends and family can keep up with her.  I never speak for her, but instead, post pictures, with her permission.  If a parent is posting as their child on social media, something is wrong.  If a parent is putting words in their child’s mouth without permission, something is wrong. One rule of thumb is if it is appropriate to speak for your spouse in a situation, then it is probably ok to speak for your kid.5

My kids’ experiences are not my own.  My job as a parent is to help my kids find their own voices, not to speak for them.  It is my job as a parent to teach my kids to advocate for themselves, advocate alongside them, and when they can’t advocate for them.  My job as a parent is to maintain reasonable privacy for my kids.  My job as a parent is to reach out for support when I need it.  My most important job is to give my kids an environment where they have high expectations, and reach their developmental potential.

  1. I use DoNotLink.com to link without improving search engine position.
  2. They also don’t pay disabled contributors for their work. Autonomous Press is a shining example how disabled people can be paid for their work.
  3. Some parents of disabled children will say these parents have a choice, but choice is not the factor in whether the task of parenting is difficult.
  4. Yes, as an employer I have really seen this.
  5. Presuming a healthy spousal relationship.  Things like accepting and declining group invitations, signing greeting cards, dealing with a bill collector, etc.
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