we are people

Open letter to sick kids and disabled kids.

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

When professionals assume that parents of disabled kids see ghosts

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting. 
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible. 
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating. 
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts. 
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts. 
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters. 
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief. 
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability. 
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive. 
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having. 
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them. 
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily. 
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Tl;dr There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.