Colwyn, his dad and I run to the elevators and race to the second floor to Medical Imaging. Colwyn has an early x-ray booked, followed by a doctor’s appointment to check his spine. My untrained eyes have noted that his curving spine is starting to pull his rib cage sideways, making him look hunched. We arrive, plop into chairs and he’s immediately called in. Yesterday, to prepare, I went over the plan for today. Colwyn, with Autism and Prader-Willi Syndrome, loves a schedule and to number the events of the day. Usually #6 is catch the bus to school and #7 is work hard all day. Today, #6 is go for an x-ray and #7 is see the doctor. On the way here in the car, up in the elevator and even as he gets changed, he runs through the day’s schedule again and again. This is what the uncertainty of change and an appointment can do.
The x-ray, however, is not terrible. The x-ray tech picks up right away that I may need to talk him through it. First, he must stand still, feet back, straight as he can, with his back to the large white background, chin up. He does it all, except for the chin. So, both the tech and I stand with our chins up, and Colwyn mirrors us. I get my first glimpse of his spine and ribs on the x-ray machine. Then he must stand sideways and keep still, By this time he’s nearly done, and without the background to lean against, it’s trickier.
I am draped with a heavy mat and hold his hands and we count to 20. I can see the tech is not thrilled with the blurry image, but she says “okay” and off we go, carrying his coat and shoes, down the hall to the doctor’s office. Again, he goes right in. Colwyn loves visiting this doctor because he has a table with a pop out piece where Colwyn can lie on his stomach and put his face in the hole. Last time, he screamed delightedly for the whole appointment.
The speed with which we go from x-ray to doctor’s room is impressive. It makes me realize that some medical professionals have a good sense of kids’ needs, whether they are typical or neuro-diverse—that is timeliness, patience, and an unhurried approach.
Within Colwyn’s first two days of life in the neonatal ward at VGH, his dad and I had to make multiple decisions regarding medical intervention. Born almost too weak to feed, Colwyn had a nasal tube which delivered pumped breast milk to his stomach, while we worked on getting him to bottle feed. Quite quickly, we were offered an opening for gastro-surgery to put a feeding tube in his stomach. We decided not to do it, determined the little guy would figure out the bottle.
My parents visited every day with different bottle tops to find the perfect shape and ease. In his first few weeks he had blood work, genetic testing, and was continually hooked up to an oxygen monitor. Within his first year, he had eye surgery, four massively long needles in his bottom for hormone treatment and began daily injections of growth hormone. At the time, we were overwhelmed, but of course there are families that suffer much more profound medical interventions.
Though Colwyn has a fleet of medical experts, he is a relatively healthy kid with a non-life threatening genetic disorder called Prader-Willi Syndrome (PWS) which has meant the daily injections of growth hormone to boost his metabolism and help him grow, blood work to check his hormone levels, and appointments with other experts as things arise, such as the scoliosis.
One of the most difficult and regular appointments is going for blood work. Due to low muscle tone, Colwyn’s veins tend to go deep and be much smaller than the typical kids. When he was little, we numbed his arms so the needle would be less painful, but still the veins were hard to find.
Sherri Water Chief’s son Landon has autism, profound global developmental disorder, cerebral palsy and seizure disorder. The hard thing for him with blood work is keeping still.
“I took Landon to VGH a few months ago,” says Water Chief. “They have a big chair and I was able to sit with Landon in the chair and assist the two medical technicians in order to keep Landon steady.” She had to wrap her legs and arms around Landon in a bear hug while one tech drew blood and the other tech helped keep him from moving. “I gave clear instructions on how to help support Landon which included everyone remaining calm and positive in facial expression, tone of voice and body language, being decisive, preparing everything out of his view and in advance so he doesn’t have to wait.” If he has to wait, or too much is going on around him, Landon begins to move as he becomes more anxious.
Water Chief’s main hope is that doctors listen to parent’s suggestions on how to best calm and approach their children when it comes to medical appointments.
Colwyn does not like to be held down so I hold his hand so it is out of the way. And often we play music. I talk him through it, we all remain positive, even as the techs are digging around looking for a vein. He’s got such a good attitude, but when he’s done, he is done.
Lucas, who is now 15, was at Stage 3 kidney failure at birth and 14 when he reached end-stage kidney failure (he’s had a transplant). When he was little, his mom Aleksandra, sat him on her lap for blood work, but as he’s gotten older, he prefers to sit on his own, choose which arm, and to answer all the questions asked by the technician. He likes being reassured that it’s not going to hurt.
“If it’s a new tech who starts over-explaining or saying things like it’s just going to hurt a little bit, just a little pinch, etc, I cut them off politely and just say ‘Nope, it’s not going to hurt’ and tell the techs to tell him the same, otherwise he feels anxious about the potential pain.”
Lucas does not like Band-Aids, so Aleksandra is working on ways to get them off without pain. Colwyn, on the other hand, wears Band-Aids on his fingers to stop him from picking, on his forehead for the same reason, on his nose to keep his fingers out, and anywhere else there may be a potential scrape. For him the Band-Aid communicates to others he’s hurt and to himself to keep his fingers off things. He has a wild assortment of sloth, cat-shaped and superhero Band-Aids for these occasions. Just this week I took to calling him Pickle Head as friends sent him new ones for Valentines day.
Though there is much to consider with special needs kids, typical kids who see fewer doctors and rarely have blood work done, may have surprise anxiety when they do. All families benefit from a tech or doctor who can listen and adapt. Small changes can mean getting the blood out! Medical appointments can feel rushed, but if we can breathe and slow down a little, they go more smoothly and finish more quickly than if we are hurried, worried and wasting time on anxiety created by misplaced sympathy.