Raising a child with intellectual or physical challenges is well, challenging. That’s why getting the support you need early on is crucial.
Despite doctors telling us there was nothing wrong, we knew otherwise. Parents always know. We feel it in our gut. Mother’s instinct—it’s real and it’s powerful.
Though her birth was unremarkable, when she was a few months old we started having concerns. Our already tiny baby girl was losing weight and the milestones that mark healthy development weren’t being achieved.
True fear kicked in when our daughter stopped feeding. We were losing her and we fought to make doctors listen. By the time they did, our baby was in full “failure to thrive.”
It was at this time, when Avery was eight months old and living full-time in the hospital, that we got a diagnosis. We heard the words, “Chromosomal Translocation Disorder” and “Rare Syndrome” and “We are so sorry.”
We fed her through a nasal gastric tube and she began to gain weight and the colour came back to her cheeks. With her health and growth on track, we turned our attention to her development. What would a disorder like this mean for our child? What would her future look like?
Every specialist we met with agreed—the loss of genetic material was catastrophic. By all accounts, it meant our child’s cognitive and physical development would be significantly affected. “She may never speak, so start signing with her as soon as possible. It’s unlikely that she will be fully mobile without assistance. Also, nearly every documented case we’ve seen with a similar deletion is somewhere on the autism spectrum.”
Those words were like a kick to the stomach. I recall physically losing my breath.
I remember thinking, “This can’t be right. That sparkle in her eye is so bright. She understands and she expresses love. We’ll do everything we can to give her the best possible chance at a full and beautiful life.”
Avery was scheduled for gastric tube (G-Tube) insertion surgery just before her first birthday. She would be fed via a tube in her stomach for years to come. It was the right choice at the time. The nasal gastric tube was uncomfortable and difficult and not a long-term solution. But, she came down with a cold the day before the surgery and it was cancelled.
We continued using the nasal gastric tube, but also introduced some solids by mouth. There was no pressure. She got the bulk of her nutrition and hydration via the tube, so we played with food and let her go at her own pace.
When the date of the rescheduled surgery came, she had a fever and the surgery was cancelled once again.
In the meantime we continued oral feeding and slowly but surely, she got the hang of it. I knew she could do it. She just needed time. As feeding became more consistent, the motor skills necessary to eat and drink by mouth improved. We thickened fluids to make them easier to manage. And we tried an anti-reflux medication that made a world of difference. We saw progress and felt hope for the first time in a long time.
KNOWING WHAT’S BEST FOR MY DAUGHTER
At our next occupational therapy session, I told our occupational therapist that we decided to cancel the G-Tube surgery. I expected her to be as excited as we were. I wasn’t prepared for her harsh words. She told me I was wrong. She said Avery would never feed well enough on her own and she called me a negligent parent for cancelling the surgery.
I don’t remember what I said in response. I know I cried and mumbled something about knowing what is best for my child. We never went back to see her again. The trust between our family and that therapist was destroyed.
That’s the thing about therapists—physical, speech, occupational, and behavioural. They support us and hold our hands and teach us what to do and cheer the loudest when our kids achieve a goal. It’s vital to find a therapist you click with—somebody who celebrates with you and supports your child.
We found our support early on and I credit that early intervention for much of my daughter’s current success. I’m writing this post in the waiting room at her cheerleading practise. Not only is she walking on her own without assistance, she’s balancing on top of a human pyramid. And yes, it chokes me up every time.
Avery’s physical therapist helped her learn to walk up and down stairs safely and suggested special knee high orthotics called AFOs that helped support her ankles when they were too weak to support her properly. She helped us wean her off those “magic boots” and she celebrated with us as we threw them away with great ceremony into the trash can.
My daughter’s new occupational therapist taught her to fasten zippers and sit tall in her special chair and so many other important things. As Avery moves through school, we continue to rely on OT suggestions—they keep Avery safe, ease frustration, and help her function to the best of her ability.
SPEECH CONTINUES TO BE THE BIGGEST CHALLENGE
In the early days, my daughter struggled to speak. She communicated in one syllable squawks and coos and some ASL hand signs. At two years old, she had yet to speak a word. During a speech session around that time with Avery’s speech therapist Sarah, she spoke. Just one word and it was the sweetest sound I’d ever heard.
Sarah had her playing with toy Avery loved—a ramp with a little red ball. Avery wanted the ball, so with the proper prompting she asked for it. “Baw.” She said ball.
And of course I cried. Pretty hard, actually. And you know what? Sarah cried too. Both of us had worked hard to get to this point so we cried proud tears together. Imagine somebody caring enough about my child to feel so much?
Avery continues to struggle with speech. She has what is called a “profound speech delay.” But now that she’s older, we no longer qualify for funded speech therapy. The speech and language support she receives at school is minimal so we found private therapy. It’s expensive, but it’s an investment in the most important thing in the world. Her.
When Avery was first diagnosed, we knew we had to do something to help our daughter, but we didn’t know where to start. Finding the proper support early on and as our children’s needs change and develop is life changing.
HOW DO YOU FIND THE BEST THERAPISTS?
Talk to your doctor. Ask therapists you know and trust for referrals. Search online and read reviews. And most importantly, reach out to other parents in the community (online or in person at appointments) and ask for advice. I’ve found other parents are the most valuable, current, and accurate resource.