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Stop Trying to Make Me Feel Better About My Daughter's Diagnosis

Parents of kids with "special needs" don't need your pity

Lorna Rose

Published on: January 31, 2020

mother and daughter

When I explain my daughter’s diagnoses, a well-intentioned friend might say, “Well, I had X and Y as a kid, and I turned out fine.” 

Or sometimes a loving relative will say to me that everyone learns in their own time. I usually nod in agreement. 

I know these statements come from a good place and that people just want to reassure me that everything will turn out okay and give me some peace of mind.  

But I also find these statements incredibly invalidating. 

I start questioning if I’m doing too much, when most of the time I wonder if I’m doing enough. Each week I drive my daughter to occupational therapy and gymnastics. I work with her at home. I’ve advocated to get speech therapy included in her Individual Education Plan (IEP) at her preschool. I’ve gone to presentations by behavior experts, seen a developmental specialist and stressed over genetic testing. If she’s going to turn out fine in the end, what’s the point? Why bother with the therapies and the IEP and the rest of it?   

We’re not victims of our children’s diagnoses, just as they aren’t a sum of them. So please stop trying to make parents like me feel better.

To date, my daughter has received four diagnoses. None are readily apparent to the untrained eye. One has been mitigated with surgery; one has gotten more pronounced as she’s grown, and two of them she’s learned to adapt to. She gets weekly occupational therapy and receives physical and speech therapies at school. We’re about to add equine therapy to the mix. She has participated in a gymnastics class for two years now; it’s not just a fun weekly class to get the wiggles out — it’s a valuable proprioceptive activity that will help her with self-regulation, motor planning and balance. 

I dislike the term “special needs.” It implies fragility, a necessary soft touch, a set of low expectations. I know this because I’ve seen the looks of pity in others when the term is said and have probably given that look myself in the past. I know it because I got tired of those reactions when I was growing up and the term was used to describe me. In truth, many of us have special needs. I’ve parented each of my children differently because each child is different, with separate sets of personality traits, strengths, challenges….and needs. This is what’s required of all moms and dads — customized, intentional parenting, a way of scaffolding, of putting together the puzzle, of meeting each child where she or he is. 

Yet I use the term “special needs” because it’s a shorthand most everyone recognizes.

I’ve come to understand that diagnoses are helpful, labels are not — but sometimes the bridge between the two is just too short for people not to cross.

My daughter — the “special needs” one — requires, much of the time, a firm voice to match her roar, a strong will to match her iron fist. 

Braided within the fine hairs of parenting, when it comes to raising a child who needs extra support, are thorns of self-doubt and frustration. And they can pierce through daily life. 

With every decision, I second-guess myself: Is serving dinner on her favorite plate fulfilling a need, or am I teaching her to be inflexible? Where’s the line between accommodation and enabling? When I explain our current confines to others, am I setting healthy boundaries or seeking sympathy? When I say no to camping or to a weekend away from home, am I limiting our family, or are those things really not possible right now? I am often confused about the fine line between fostering independence and pushing unrealistic expectations. 

I feel frustrated when I have to prove to her pediatrician that sleep training is not the right solution at night, just to get a referral for a sleep study to confirm sleep apnea. Or having one of those behavior experts (the one you arranged child care for so you could attend his presentation) inform you that sensory disorders don’t really exist because they are not listed in the Diagnostic and Statistical Manual (DSM). Yet I’ve seen the magic of a weighted blanket, noise-canceling headphones and a trampoline. I’ve seen the quick regression when she misses an OT appointment. 

  I have a whole new community, one that I never would have otherwise had, and I wonder what I’d do without them. 

I don’t want admiration. I didn’t become a parent expecting that. I just want affirmation. When I do talk with someone who acknowledges what we’re doing is hard, I glow inside. I’ve bonded with other parents over sensory issues and toilet training, hypotonia and feeding challenges, and preferred vestibular activities. They’ve given me ideas for how best to provide everyday support for my child, things I never would have come up with on my own. I remain forever grateful to occupational, physical and speech therapists, school psychologists and teachers who show my child as much love as I do. I have a whole new community, one that I never would have otherwise had, and I wonder what I’d do without them. 

My daughter is flourishing because of all this support and we celebrate milestones, wildly and loudly whenever they are reached. 

So, while my daughter wasn’t walking, wasn’t talking, wasn’t jumping, she was doing something else. She was developing an ability to experience the world differently and the ability to intuit. She was harvesting the warrior inside her, so she could endure a tonsillectomy at 3. She was developing vocabulary to describe the words that she cannot yet clearly say. She was becoming finely attuned to her environment so she could read minds (which she has done on more than one occasion).

My daughter was developing superpowers.

We’re not victims of our children’s diagnoses, just as they aren’t a sum of them. So please stop trying to make parents like me feel better. We don’t feel bad. Our kids are exactly who they need to be.

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