Why I Don't Identify Myself as a 'Special Needs Mom'


I’m a mother.

Many people might call me a special needs mom, but I don’t think of myself that way. I’m a swim mom, a dance mom, a music mom, a girls mom. But not a special needs mom.

When my younger daughter was born with Down syndrome, it was initially difficult to wrap my head around it, but it didn’t take me long to figure out what it meant to me as her mother. There were many “aha” moments  in first six months of her life, but what really defined how I was going to approach this whole, unplanned journey, was my experience as a teacher.

I was familiar with Individualized Education Plans (IEPs) and 504 plans. I had also worked with programs like Special Olympics and knew children with all sorts of disabilities. But it was the teacher part — and the fact that I had worked with children most of my life — that really helped me figure it out. When I went back to teaching after she was born, I looked at all the kids  in my classes. There was a moment when I realized each of these kids had special needs — needs that were different and unique to each of them. The difference was, I had an idea of what my daughter was going to need from birth.

It’s still my belief every kid has their own needs. Maybe that kid can’t stay organized, that one has trouble with handwriting, that one might need to go to the bathroom more than others.  One kid may have trouble studying for a variety of reasons. One may have trouble sitting still. Still another may rarely get enough sleep. Another may never have a pencil. That one is too shy to speak in class.

See, each student has at least one special need. Any need you or I or anyone else has is special to you. In my opinion almost every individual need is special.

I’m the mother of two girls. They’re difficult and funny, each in their own way. As their mother, I’m trying to meet all their varied and different needs. They both have special and specific needs, and I don’t hold one of their needs higher than the other — although I’m pretty sure they would each argue with that statement.

The older of my daughters is nearly 14, nearly a freshman, nearly in high school. She’s steady and silly and quiet and loud. She’s reliable and gets her homework done without any prodding from me. She loves swimming and singing and hanging with her friends. She’s a teen and she’s difficult to read. She’s pulling away a bit (although she still seems to need her mom quite a bit as well). She’s snarky and then sweet as sugar. She makes my head spin and sometimes makes me question everything about my life and my parenting skills. She wants her privacy and she want to be noticed. She wants attention, but she doesn’t want to be the center of attention. She wants her mom, but she doesn’t want to tell me she wants me. She needs me, and she needs specific things from me. I try to come through for her.

My younger daughter is 12. The two girls are 15 months apart, although they’re three years apart in school.

Because of her can’t-stop-won’t-stop personality, my 12-year-old is the complete opposite of her sister. She believes she is the cherry on top of the sundae, the bow on the present, the star on the Christmas tree. She has the kind of confidence we all wish we had. But, as the mother of such a child, I can tell you it’s tough to reign in that kind of confidence. And it’s also very tough for my other, older daughter.

She’s completely honest, holding nothing back. She loves unconditionally and largely, and loves everyone. The hardest thing is she thinks she knows everyone, and that everyone knows her (she seriously believes she is famous). She’s emotional, crying at the drop of a hat. She sticks up for those she loves with a fierceness that’s sometimes scary. She will work her hardest to get you to love her if she thinks you’re worth it.

She’s easily bored, but just as easily amused. She’s a slightly picky eater, but eats the things she loves with gusto. She doesn’t make a fuss when I serve food she doesn’t like; she doesn’t throw a fit and whine about me making something else (maybe she’s learned that’s not happening). She just won’t eat it — but may ask for ice cream later. She’s exhausting and endearing, unyielding in her desire for the things she loves, including her family. She doesn’t stop talking until she gets what she wants. Usually I don’t know whether to pull my hair out or laugh. Most often I split the difference, I smile and shake my head.

It doesn’t really matter to me that one of my daughters has Down syndrome. I’m their mom and have to fulfill both of their many, many needs in many areas of their lives. My two girls are completely different. I’m sure every mom can say this about their children. And they both need me and their father in different ways. They both have their special needs.

Many would qualify me as a “special needs mom.” I don’t see my self that way. I’m the mother of a teenager and a tween. I’m the mother of a swimmer, and of a dancer, and of a singer. I’m the mother of a child who wants to tell me nothing, and the mother of a daughter who wants to tell me everything. I’m the mother of a daughter with a lot of self-motivation, and also the mother of a daughter with a lot of self-confidence.

I’m the mother of daughters.

I’m a mother trying to figure out what each of my daughters needs.

I’m just a mother.

We want to hear your story. Become a Mighty contributor here.

Editor’s note: This story has been published with permission from the author’s two daughters.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

Baby with Down syndrome sitting in a bouncy chair wearing a blue jumper and gumming a piece of bread

What Does It Mean When the Doctor Asks If My Son With Down Syndrome Is 'Thriving'?

I don’t like the word “thriving.” The Oxford dictionary describes the word “thriving” as, “prosperous and growing; flourishing.” If you looked up the word in a thesaurus, synonyms include, “advancing,” “blooming,” “developing” and “doing well.” I am not yet sure what it means in the context of parenting kids with disabilities. The National Health Service website [...]

What Inclusion Really Means

I can count on one hand the amount of people with disabilities I knew as a kid — a few from our church and a couple from the neighborhood. I did not know anyone with a disability from my Catholic school, my soccer team or acting class. I don’t think anyone with a disability played tag with [...]

Meagan Nash Asks OshKosh B'gosh to Include Her Son, Who Has Down Syndrome, in Its Ads

A photo of Meagan Nash’s son, Asher Nash, and a request for OshKosh B’gosh to feature children with disabilities in its advertisements has gone viral. Read the full version of Meagan Nash Asks OshKosh B’gosh to Include Her Son, Who Has Down Syndrome, in Its Ads.
Willow recovering in the hospital but looking cheerful.

What Doctors Didn't Tell Me About My Daughter's Down Syndrome

When my daughter, Willow, was born we heard over and over again how weak she was because of her Down syndrome. Doctors and nurses used words like “fragile” and “frail.” Willow’s medical file was filled with even uglier words. “Failure to thrive” topped the list. Hypotonia, or low tone, quickly followed. Every word reeked of weakness. [...]