In my conversations with other moms of uniquely abled children, there were several common threads woven throughout all their stories. Of course, it was all worded differently but it was the same concept. Since it was expressed so often, I realized it needed to have its own post.
One of those is the belief we can fix our child. Given enough therapy…medicine…surgery…time…prayer or whatever the case is, they will catch up or get better. And if it didn’t achieve the goal then it wasn’t the correct medicine, therapy, or surgery. Now we find ourselves looking for new doctors, new therapists, new ideologies, etc. We wind up in a pattern of always searching, always looking but never finding.
However, it doesn’t start out that way. It began as a desire to help our children overcome some of their challenges. In my case, my son, Caleb was delayed in reaching all his developmental milestones. To help him reach them we were referred to a physical therapist.
The success with physical therapy
She worked with him and showed me exercises I could do at home to help him with his hypotonic and hypertonic issues. The therapy was monumental in helping Caleb overcome his delays. In fact, he learned to roll over, fall down, crawl, and walk because of physical therapy (PT).
Before PT, it seemed like Caleb was unaware of his body and didn’t know what it was capable of. But when he got a little nudge from PT he excitedly realized all the amazing stuff his body could do. It was like Caleb was unaware of his full potential until someone took the time to explain it to him. Once he realized what he could do, he ran with it.
The success of PT actually wound up doing a lot of harm…to me. It convinced me ALL of Caleb’s delays could be fixed with therapy. Unfortunately, this isn’t true. Therapy can’t fix our children nor can it make their bodies do something it’s incapable of doing.
Therapy didn’t resolve all delays
For example, Caleb still can’t grip a pen or pencil correctly. We’ve used different grips, different pencil sizes, etc. You name it we’ve tried it. It is definitely a better grip than when he was a toddler but it hasn’t advanced any further despite therapy.
Caleb also knows the spelling of many words, yet can’t write them correctly and this is beyond how he grips the pen/pencil. He never places the letters in the correct order. So reading Caleb’s spelling is akin to playing an unscramble the word game.
Currently, on our refrigerator, Caleb has spelled the following word ‘dgorans’.
If you unscrambled the letters and guessed he was spelling dragons, you’d be right. He knows how to correctly spell dragons, he just places the letters randomly. He can’t seem to wrap his mind around the concept of sequencing and how important it is in spelling.
I did teach him the importance of placing the letters next to each other, which is why they are squished next to each other.
But when he writes (I use that term loosely) they may be next to each other or they may not. Sometimes a letter will be above or below another. Other times he scribbles one letter on top of another. This is a skill he still has not mastered, despite therapy and our efforts.
Our experience with speech therapy
This is also true for his verbal communication. Despite public and private speech lessons, his language skills are still limited and he’s unable to carry on a conversation. He also has a hard time differentiating between question words like:
- how
- what
- who
- when
In addition, he still struggles with the pronouns you, me, and I. He mixes them up all the time.
He will often ask me “Who are you?” At first, I was puzzled. Then I was concerned and worried he was losing his memory since he couldn’t remember me. Eventually, I realized he was using the wrong pronoun. He really meant “Who am I?” He wanted ME to guess who HE was pretending to be.
So speech continues to be an issue with Caleb. We really didn’t see as much progress with it as we’d seen with PT. He certainly didn’t have that awakening moment with speech as he had with PT. There was never that mind-body connection. And it wasn’t because one therapy was better than the other. Rather, I know now no amount of therapy will make Caleb’s body do something it’s incapable of doing.
Is it ableism or something else?
There is such a thin line between teaching our children how to do a skill and fixing them to become more able-bodied. This isn’t limited to therapy either.
When we were told Caleb’s brain may be malformed (it isn’t), the first question my husband asked was if there was surgery to fix it. Likewise, when we attended medical conferences about our son’s disability (back when information about the syndrome was still so new) every year there was always one person who asked if the mutation could be fixed. Or if there were procedures to cure the mutation. This wasn’t necessarily for their own child but for those kids who would be diagnosed in the future.
I’ve read articles that blame the desire to cure our children on doctors, therapists, educational institutions, and even society’s ableist viewpoints. I’m not sure how entirely accurate that assessment is. For sure, they can definitely contribute to the problem but I believe it’s our own fears that draw us in that direction.
Our feelings of loss, anxiety, fear of the unknown, shame, the fear of our children not being whole, etc. I think it’s our own pain that makes us vulnerable and easy prey to the notion that therapies, medicine, surgeries, holistic methods, alternative meds, etc can fix or heal our children.
However, the problem is, what if our child isn’t broken?
What if they were meant to be the way they are? What if they were created to be exactly who they are? And what if what needs to be fixed is our mentality?
Psalm 139:13-18 (NLT)
13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.
17 How precious are your thoughts about me,[b] O God.
They cannot be numbered!
18 I can’t even count them;
they outnumber the grains of sand!