Stop saying “special needs” parent
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Ask Aimee is a new advice column on navigating life as a parent with a disabled child.
Stop saying “special needs” parent
Is it better to say I have a disabled child or a child with special needs? As the parent of a disabled child, I believe it is important to embrace the terminology the disability community prefers to use when it comes to disability. This is one reason why I see my kid’s needs as just human needs, not special needs. This is why I believe we all need to stop saying special needs.
I am the parent of a disabled child. I am also the parent of an abled, typically developing child. I don’t always get the words right, but I try. I say disabled now instead of special needs for several reasons. One, I have learned that the disability community prefers to be called disabled. I learned that special needs is a euphemism that only further isolates and excludes. It implies that the needs of the disabled are not common, not normal. Now that I know this, I can’t unknow it.
We have to stop tiptoeing around these labels and just accept that disability exists. In an accessible world, no one’s needs are special. They are just human needs. We must push for change and inclusion with everything we have, including and especially with our words. In my experience, the people who have the most trouble with this concept are parents of disabled children. Parents like me. Parents who cling to this label for themselves: special needs parents. I’m a special needs mom. We’re a special needs family. But in fact, this label says nothing true.
Look, the experiences of the sometimes-known-as-special-needs-parents are challenging to be sure. It’s hard. The days can be long, the nights sleepless. The logistics of insurance companies and doctors and Medicaid and hospitals and medical equipment and adaptive equipment, IEPs and devices and therapists and behaviorists and medications feel endless and thankless, especially when we don’t know other families like ours.
The expense is unfair and sometimes insurmountable. Laws are inadequate, accessibility is not prioritized. The feeling of loss is often present. Jealousy. Resentment. Isolation. But by calling ourselves special needs parents, we are making assumptions about what other people’s parenting experiences are like; we are in fact saying we believe that everyone else out there is having a ball and we are over here suffering with our imperfect children and no one understands.
At first, I was angry. I kept saying how unfair it all was for my daughter, whose life would be harder because of her disability. I compared, and I despaired. I felt sorry for myself. I was resentful at others and their perfect children. I began to feel like my child was less than. Which made me feel like I was less than. Which was isolating and I felt myself pulling away from people, thinking they just couldn’t understand. I channeled all this energy into my new identity as a special needs mom and I leaned into doing everything I could to fix my kid it like it was my new calling in life.
Then one morning at adaptive ballet, I learned something that changed the way I thought. Her class was very early on Saturday mornings, before the other classes, before anyone else was in the building. Her class wore t-shirts and sneakers, not leotards and ballet shoes. She was the only one who used a walker. Her class had drumming and jumping, not pianos and plies. The rest of the kids were also disabled but all very differently from each other. There was no dancing, no fluidity. It was chaotic and fun, but it wasn’t what my daughter wanted in a ballet class. I liked it because of the parents.
We chatted outside the dance studio, sipping coffee, sharing notes about who went to which school, who got what services, what other adaptive activities there were nearby and what they cost. We talked nurses and personal care assistants, we traded information about the best doctors and how to work the special education system to make sure our kids got everything we felt they needed. It felt like insider trading. I loved those mornings with the special needs moms. I felt understood.
“Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.”
I was doing it all wrong. I wasn’t understanding her. I was making it all about me. I was calling myself a special needs mom because of my needs, not hers. She doesn’t need to be fixed. What needs to be fixed is that there isn’t a ballet class for her to join where she can put on lip gloss and a pink leotard and spin around in her leg braces and her walker because that’s what she wants to do. My daughter’s needs are human needs. It is not special to struggle with one’s health or intellect or academics, with walking or talking or social interactions. It is human and it is normal.
The sooner we recognize that neurodiversity is a thing and that many people who a generation ago might have been hidden from view or whose disabilities were not talked about are part of society, the sooner we will make the world adapt to those who are in it. Congratulating myself for navigating the back channels of early morning mom gossip only reinforced that this is a fight, a struggle, a battle.
My daughter is not a warrior. Her life is not a war. There is joy. There is hope and tenacity. She has a very clear vision of what her life will become and it will always involve help of some kind, because that is what she needs. And what was I getting out of being part of the special moms club? Pity. Alienation. Resentment. Feeling like someone finally got it drove the perception home that no one else did and that’s just not true.
Read more: The power of labels: a question of choice
I stopped calling myself a special needs parent. I am just a parent. I stopped fighting so much and started advocating. She goes to public school like her sister and like nearly everyone else in our town. Public school is right for her and her presence benefits the town much more than having her tucked away, in an out-of-district school. She needs friends who are typical and atypical, and they need her too.
Now I’m a parent who takes direction from her child. Of course, we have rules, but now we bend them. I learned about the spoon theory and recognize that some days she has more spoons than others. Some days she needs to sleep in and that is more important than school. Some days she can read for two hours on her own, other days she refuses to open a book. She can tell me when she wants to do something on her own and when she is tired and needs more help. She can tell me when she wants to eat by mouth or if she needs a tube feed. Some days she doesn’t want to walk. Those days are wheelchair days. All of that is okay.
Some of my friends are parents of disabled children. I still like that. They still “get” me. But we have our differences and we’ve built friendships on more than how hard it is to parent our kids. Because once we start listening to our children, it really isn’t that hard.
The truth is that “special needs parents” do need more support than we have but it’s not because we need special attention. Raising another human being is difficult. Allowing society to label the human being I am raising as special or other is even more difficult. But I need to recognize that when I say I don’t want her to be disabled because being disabled is so hard I am actually saying I don’t want her to be disabled because her being disabled is so hard for me. I need to set all my preconceived notions of parenting and ability and success and independence aside and give both of my children the space to develop into who they actually are.
I need to recognize that when I say I don’t want her to be disabled because being disabled is so hard I am actually saying I don’t want her to be disabled because her being disabled is so hard for me. Click To Tweet
To do this, I read about disability rights. I follow disabled activists on Twitter. I try to follow the lead of the disabled people I know. I teach my daughter to refer to herself as disabled, as having a disability, because she is a part of the disability community. She is not alone. And neither am I. The support group I want to belong to is for all parents, because the world is big and the special needs parents club is small and so very lonely.
By defining myself as a special needs parent, I am pushing myself further and further away from inclusion, and that is detrimental to everyone. By defining myself as a special needs mom I also feel I am finding an identity in my daughter’s otherness, but that is appropriation. It minimizes my daughter’s need for community.
She needs representation and she will not find that in me, she will find it in her peers. I want to increase her access to folks who look like her, who are like her. That is what everyone needs. Our needs and our kids’ needs are everyone’s needs. They are deserving of attention by all. So isn’t it time special needs parents got a new name? I invite us to just call ourselves parents.
Aimee Christian is a freelance writer published in The New York Times and The Washington Post, on Romper.com, and on Popsugar Family. Currently hard at work on a middle-grade novel about am 11-year-old girl with an unusual disability who is faced with a difficult choice.