It’s the feeling you get when, after explaining your daughter’s diagnoses, a well-intentioned friend says “Well, I had X and Y as a kid, and I turned out fine.” The message comes from a good place. It comes from the place of wanting to reassure you that everything will turn out okay, of wanting to comfort and ease your mind.
It’s the loving relative who comments that everyone learns in his own time, and you nod in agreement. After all, you know it to be true.
These statements are incredibly invalidating.
You start questioning if you’re doing too much, when most of the time you wonder if you’re doing enough. Each week you drive her to occupational therapy and gymnastics. You work with her at home. You’ve advocated to get speech therapy included in her Individual Education Plan (IEP) at her preschool. You’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?
To date, my daughter has 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 she’s learned to adapt to. She gets weekly occupational therapy (previously at home, now at a facility) 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 throughout the week.
I dislike the term “special needs.” Surrounding it seems to be a fragility, a necessary soft touch, a set of low expectations. I know it 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, don’t we all have special needs? I’ve parented each of my children differently because each child is different, with separate sets of personalities, 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 someone who needs extra support, are thorns of self-doubt and frustration. And they have the ability to pierce through daily life.
With every decision, you second guess yourself: 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 you explain your current confines to others, are you setting healthy boundaries or seeking sympathy? When you say no to camping or to a weekend away from home, and are met with puzzlement, are you limiting yourself and your child, or are those things really not possible right now? Where’s the line between fostering independence and pushing unrealistic expectations? There’s frustration: explaining to her pediatrician that sleep training is not the right solution at night, just for a sleep study to confirm sleep apnea; having one of those behavior experts, the one you arranged childcare 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 you’ve seen the magic of a weighted blanket, noise-cancelling headphones, and a trampoline. You’ve seen the quick regression when you miss an OT appointment.
There’s bliss: celebrating milestones wildly and loudly – whenever they are reached.
You don’t want admiration. After all, you didn’t come into parenthood expecting that. You just want affirmation. When you do talk with someone who acknowledges what you’re doing is hard, you glow inside. You’ve bonded with other parents over sensory issues and toilet training, hypotonia and feeding challenges, and preferred vestibular activities. They’ve given you ideas on how to provide everyday support for your child, things you never would have come up with on your own. You remain forever grateful to occupational, physical and speech therapists, school psychologists, and teachers who show your child as much love as you do. You participate in a whole new community, one that you never would have otherwise, and you wonder what you’d do without it.
Again you ask yourself: why are you doing all of this, the therapies and the IEP and the research and the advocacy?
Because your kid is flourishing because of the support you’ve given her and the services you’ve made accessible to her. That’s why.
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, an ability to intuit. She was harvesting the warrior inside her, so she could endure a tonsillectomy at three. 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 her own set of super powers.
We’re not victims of our children’s diagnoses, just as they aren’t a sum of them. So please stop trying to make us feel better. We don’t feel bad. Our kids are exactly who they need to be.