New special needs mom: where to now?

Ask Aimee is a new advice column on navigating life as a parent with a disabled child.

New special needs mom: where to now?

Dear Aimee Abled-Mom of Disabled Kid,

My kid was just diagnosed. It’s not fair. What have I done wrong? What do I do? I did not sign up to be a special needs mom. Might delete this post later. But first, please send help and wine.

XOXO,

New special needs mom

Dear New,

First, welcome to parenthood! Whether this kiddo is your first or your last, welcome. If society were more accessible and inclusive, we would not have to have this conversation, but since it isn’t, here goes.

One-fifth of the American population lives with a disability of some kind. In other words, twenty percent. One in five people. Doctors certainly don’t tell that to prospective parents. American culture doesn’t represent visible or invisible disabilities in one out of five images in advertisements or characters in movies or shows. We live in an ableist world.

The sadness and grief you surely feel as a “special needs mom” is in part because you think life will be difficult for your child. And it may be, but if the world were more inclusive, it would undoubtedly be less difficult because we would not have to fight so hard to try to help our children conform physically, behaviorally, cognitively. If there were not such pressure on us to raise independent children, children whose success is measured by the same barometer as the success of those who are able-bodied, neurotypical, and possibly privileged in other ways.

The bad news is that the odds for those one in five are not great. Ableism is real. Disabled and chronically ill people face significant challenges in the workplace, in schools, and most definitely when it comes to health care. There is even disagreement about what constitutes a disability because there is still such a stigma about the word disabled and the fear of being perceived as less than.

So let’s say it together: Disabled is not a bad word.

Disabled is not a bad word. It is not an insult. We don’t need a euphemism. We don’t need to erase the truth with some alternate term uttered in a stage whisper. Disabled people know they are disabled, and they need others to know it, too. If you can’t get comfortable with this and say it for your kid so your kid can say it too, you will be doing your kid a disservice. Say it. Disabled.

'Disabled is not a bad word. It is not an insult. We don’t need a euphemism.' @thewriteaimeeCLICK TO TWEET

And yet. You are allowed to mourn. You are allowed to grieve. But we also need to acknowledge that the growing of another human would never have, could never have gone exactly as we’d have wanted no matter what. Expectations are always unrealistic when it comes to raising children. Or really, when it comes to anything. But since our society doesn’t prepare us for a moment like this, or even tell us that a moment like this could possibly come unless we’ve done something unforgivably wrong like drink or smoke or eat fish or be old during pregnancy, here are six things to do today.

What to do next? Practical steps for a new mom of a disabled child

1. Make a friend who gets it. It won’t be as hard as you think. There’s probably a Facebook group for families of disabled kids in your city or town, or for families of kids with your kid’s diagnosis. Ask at your kid’s school if the guidance counselor or special education teacher or integrated classroom teacher can connect you with a parent they know.

2. Learn as much as you can about your child’s diagnosis and teach other people about it too. Do not be ashamed that your child is different. Suppose you teach your children to advocate for themselves and be open about their disabilities and differences. In that case, they will find they are not the only ones. This will begin to normalize disability in their world, and their presence – and yours – may be a gift to the next family who is struggling with accepting their diagnosis.

3. Feel blameless. Do the genetic testing if you feel it’s important. Do the research. But at some point, it just doesn’t matter. “If only” isn’t productive. Being present with your child is.

4. Read about disability and disabled people. Believe in chronic illness. Learn the language that disabled people use and why they use it. Understand why disabled people have moved away from the term special needs. Elevate disabled voices and start making the world a more inclusive and accessible place.

5. Don’t give in to compare and despair. Find your voice. Find yourself. Some things about this parenting ride are going to be harder. Some things are going to be easier. But with all things, you have an opportunity to make the world a better place than it was before your child entered it. Isn’t that the point of being a parent, no matter what?

6. You are still a mom. You might find yourself drawn to the label of “special needs mom,” but at the end of the day, you are a mother. All children, irrespective of their abilities, need love, affection, acceptance, and nurturing. I am making an assumption when I say that it is your child and not you who has the disability. Perhaps you are disabled as well, and if you are, then I’m going to invite you to write in with some information you’d like abled parents of disabled kiddos to know. For me, it’s that parents of children with disabilities are just parents. Same as parents of children with chronic illnesses. Or parents of gay children, or trans children, or neurotypical children, or really any kind of children. We are all parents.

Read more: Being disabled and raised by a single mom

If you are the able-bodied, neurotypical parent of a disabled, medically complex, or chronically ill child, the parent of a newly diagnosed child, or someone you love is newly diagnosed, and you are struggling to understand how to navigate this world, you’re in the right place. Let’s do this together. I am still learning, and I can’t promise to always get it right, but I am committing to sharing with you the things I am teaching my daughter and the people in my life to help make the world a more inclusive and accessible place for my kid and yours.

Up next in #2: I want to encourage my kid and tell her that she can do anything! Am I right on the money? Stay tuned and find out!