My Disabled Son’s Typical Brothers

Some days ago, I was at a playground with my two eldest boys. A little girl the age of my eldest (4 1/2) came over and chatted up my kids. My middle son, who was in his wheelchair, smiled and reached out to hold her hand. She happily held it, and started asking me questions. Why is he in a wheelchair? Why can’t he talk? I started to answer her, when her father came over and started to drag her away. Worried that he might just be uncomfortable, or think I didn’t like the questions, I said cheerfully, “It’s no problem at all! He likes meeting new people, and we were just getting to know each other.” My kid is more severely disabled than most people are used to seeing, but he’s very smiley and often wins over even uncomfortable people. Not this time. He looked at my middle son again, muttered something unintelligible, and pulled his little girl away by the hand. He actually took her away from the playground entirely. My oldest son watched the whole thing.

We were told four days after our second son’s birth that he would not have a typical life. That day and night were too horrible for me to be willing to remember very often. But I do know that one of my most overriding concerns was for my oldest son. Up until that point, I never felt like I had dealt him a bad hand in life. He had parents who adored him, read to him, played with him, cared for him. We could provide him with a secure and stable life, one that I assumed would be easier than my own in many ways. But his life had suddenly become harder, too.

We can’t go out in public without people staring. We can’t go on certain vacations. They will be teased. They will be embarrassed to bring friends over. When we die, my typical sons will have the financial and familial responsibility of taking care of their brother in addition to their other life concerns.

We have to balance the extra health care and therapies my disabled son needs with what my typical kids need. We need to find ways to spend time with each alone, and things that everyone can all do together.

I’ve since been somewhat reassured by having conversation with many siblings of people with special needs. To a person, they all say it was more difficult. Some feel a huge resentment and that they were unduly burdened. But most said that it made them more compassionate and patient. Some said it was comforting to them because they knew their parents loved them unconditionally.

My oldest is a sharp little tack, emotionally sensitive, self-conscious, tightly wound, and intense. I adore him to pieces, and he’s an absolutely amazing kid to parent, but I do worry that he does not have that easy-going personality which could take this extra difficulty he has been dealt in stride. My four-month-old certainly smiles a lot, but obviously we don’t know what his temperament will really be. We try to be as open as possible. My oldest knows that his brother will never talk or walk like a typical adult, and that we don’t know how much he will ever be able to say or if he will ever walk. He knows that he will always act like a child. He knows that we were very sad when we found this out. Sometimes, when a stranger tries to chat with my middle son, he informs her, “He has [Ridiculously Rare Syndrome]. That means a piece of one of his chromosomes got broken off and an extra bit got added. So his brain got made wrong. He can’t talk.” Some syndrome parents don’t tell their other kids until they ask, but we thought it was important to be very upfront. My oldest does not yet fully realize that people will be off-put by his brother and that they will tease him, although incidents like the one in the park are probably giving him a clue. My heart sinks at the thought of both of my typical sons realizing that.

I am too idle a parent to have ever been inclined much toward tiger mothering in any case. But when my wildest fevered dreams for one boy are that he might be able to bag groceries one day with a minder, it’s hard to get too hung up on the Ivy League for the others. When I was pregnant with my third, my husband and I would whisper to each other, “Please let him just be a C student.”

We had a third child in part because we always planned to. But we also read studies that showed that in a home with a severely disabled kid, outcomes were better for everyone – siblings, parents, the disabled kid – the more siblings there were (up to four). We also wanted to tilt the emphasis of our household a little bit away from all disability all the time. Apparently, there is often a special bond between developmentally disabled kids and their younger siblings – because they spend some time as developmental peers.

One of the reasons I want to go every year to the conference run by the charity that supports the Ridiculously Rare Syndrome is for my boys to know that they are not alone. That there are other boys and girls who have similar brothers and sisters. Last year, at the banquet at the conference, I saw a typical teenage boy who was a sibling go up to one of the girls with the syndrome and ask her to dance. She was over the moon with joy, and I imagined one of my typical boys one day thinking to do the same.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.


  1. Love the photo!
    I have high hopes for your son. People are doing amazing things with technology. If someone can run a complex communication system with just eye movement, I’m sure (hope) your little boy with grow up to have more independence than you and can imagine now.
    As excited as I am for people to perfect a car that can drive itself, I wish they would put all of that energy into developing adaptive/assistive technology.

    • Miss Mary, thanks! It’s from a year and a half ago.

      And we’re starting him on iPad training and PECS now. So….here’s hoping!

    • google’s already got cars what drive themselves.
      The problem with “adaptive/assistive” technology is it requires electrodes and a lotta computing power — at least for the people with the most troubles.

      • I’m not sure I understand and/or completely agree, Kimmi. Since adaptive/assistive technology (AT) can be as simple as a curb cut, I was not specifically referring to devices that require a lot of computing power. You might be surprised at how people’s lives can be improved by low tech AT. For example, the PECS that Rose referred to above is a picture based communication system. Most of the time those are just line drawings or photographs that assist people who do not use words to communicate to get a point (desire, need, thought) across to another party (disabled or not). Those pictures can be loaded into a speech generating device such as a Dynavox, but they don’t have to be. I support people who just use object symbol based systems (hand you a toilet paper roll or a spoon to tell you they want to use the restroom or eat).

        • *nodsnods* sorry, was thinking of people more heavily disabled.

          • I don’t want to discount people who have high support needs either. Some of the people who use PECS have high medical and/or behavior support needs. It sounds like Rose’s son has high support needs in one or both of those areas. Are you thinking of people who have limited mobility and would benefit from technological advancements? I guess I’m just not sure what you picture when I say AT.

          • Yes, my son is definitely in the very intensive needs category, and his developmental disabilities are global. His fine motor skills aree at about a 12-15 month level, and apparently that’s all you need for ipad and PECS. So we have lots of high tech and low tech stuff to help us out:
            Leg braces
            Trunk orthotic
            PECS (which is a bunch of laminated symbols stuck on a Velcro board)
            Wheelchair with bus hooks
            Seating system
            Gait trainer
            Cube chair
            Various temporary splints and short fixes
            Feeding tube

            Mary is right about how it changes a life. And much of this stuff has only been around for a less than a generation, so there’s no telling what might be done.

            The are also pharmaceutical possibilities. The big money is in Down syndrome and autism, but some discoveries there may be beneficial for us, too.

          • Ooo, and a treadmill that goes with the gait trainer in the picture above. And a swing. Plus all the stuff his therapists bring by.

            No one with his syndrome ever walked before all this stuff. Now most do. one mom I know said her daughter went from signing single words to saying five word sentences when she got her hands on an iPad. And there really are a lot ways forward. Very exciting!

    • Before I ask, I have to admit I only read the first 3 pages of your link, Pat. Why not just use a Dynavox?
      The device is designed as a communication system and everyone I support that uses a device has gotten covered by their insurance 100%. The PDA seems like added work and I just don’t see getting a PDA covered by insurance.

      • Well, it’s a research project. I mean, if they did it again today, they’d certainly skip the PDA and just use a smartphone.

        You have no idea how many projects in my head have been tombstoned or preempted by the smartphone, myself.

        Why have a Dynavox when you can have an app on an iPad?

        • Some people do chose to use the iPad. Apparently Rose’s son has already begun his work. I just don’t think that the apps have all the kinks worked out yet, at least not in my personal experience. Besides, I have never seen an iPad covered by insurance (yet).

        • And I don’t think there is necessary an “app for that” for all of the systems that Dynavox offers. Is there an app that can help you communicate with just eye movement?

          • Yes/no… there are software programs for laptops that could be ported to a tablet or phone, but it’s/they’re proprietary/commercial.

          • This reminds me, I need a fantabulous IT guy at my agency. When I asked my director if I could help her with the 12/13 budget, she said we need a bit pot o’ money. Guess I’m not getting that IT guy after all 🙁

          • Do you have a non-fantabulous IT guy you can unload to make space?

            Depending on what you’re looking for and where, I might know a guy/gal.

          • We don’t. We are small, poor, and stuck in the stone age (2 of which are common amungst agencies like mine) enough that we contract out our IT needs. It is a terrible solution for multiple reasons. As our needs grow, we will inevitably have to bring someone on board. I’ll let you know when we are ready, thanks Patrick.

          • From what I gather, there is an effort to move away from dynavox and toward iPad. iPads are cheaper and less cumbersome and more socially acceptable. There is no consensus on an ideal app, but a lot are in the works.

  2. Slightly on topic, I was talking to my boss about her children. She too has two typical children and one child with a disability. She made an off hand comment that she hopes her son has a more traditional love life. I was surprised to hear her say such a thing and said so. She stated that she only feels that way because she knows he will have life long responsibilities related to his “severely disabled” sister and just wants his life to be as easy as possible. Broke my heart a little.

    • Does that mean not gay? That never even occurred to me. I’d be totally okay with it, but I guess I don’t think of being gay as a substantial drag on one’s life.

      • We may have been talking about cross dressing at the time. I’m sure she wouldn’t mind if her son was gay, she just wants him to have a life without too much grief from people who are not very accepting. These thoughts don’t occur to me often. I always assumed because I do not have a family member with a disability (not anything more than poor vision or bad knees anyway).

        • Interesting. I have a general worry about my kids being nerdy or socially awkward, and then things will be that much harder. I probably worry most that if one of them turns out to be uncharitable or is struggling with life, the other will have the entire burden.

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