An 18-year-old walks into a hospital, Part One: About eating
When a young adult patient with a disability is admitted to the hospital for a serious surgery, their family should not face barriers when seeking information about their status and how to support them. Parents of kids with special needs know, their need for caregiver support doesn’t magically disappear upon their eighteenth birthday.
Our son — a capable, intelligent 18-year-old who is diagnosed with Autism Spectrum Disorder and Inattentive type ADHD— had spinal fusion surgery to correct scoliosis. His hospital stay was expected to be three, or possibly four nights long, but there was a complication and he was there eight nights. Because he was an adult patient, not a pediatric one, our son’s hospital stay was harder on him and his family than it had to be. Despite our son consenting to his parents involvement in his care and treatment, hospital staff repeatedly failed to facilitate family support and at times discouraged it. He’s recovering well at home now, and I’m processing the experience by writing about it. This is Part One: About Eating.
Our first meeting with the spinal surgeon is by video in January, the three of us huddled around a laptop computer on the kitchen table. The surgeon is silver-haired, and radiates competence and confidence. He says he’s happy to meet our son, and to see that he has loving parents. When he says he’s going to show us our son’s x-ray on the screen so we can all see it as we talk, I brace myself.
I haven’t seen the x-ray yet. My husband, who was with our son at his appointment with the orthopedist, told me afterwards, “I almost cried when I saw the x-ray.”
Now, looking at the x-ray on the laptop screen as the surgeon speaks, I see what my husband meant. It hurts to look at it.
The surgeon asks our son if he has back pain and he says yes, he’s in pain pretty much all the time, and there are times when it’s worse. The surgeon says his case is not an emergency, in that he has to have surgery right now, but he does need it because the condition will progress. His pain will no doubt get worse, and if he waits until he’s in his twenties, the surgery will be more extensive, his recovery more difficult. The surgeon tells our son, if he were to decide to have the surgery within the year, that would be good.
The surgeon describes the procedure — two metal rods are inserted, one on either side of the spine, and then attached with screws on each side of the vertebrae, holding the spine straight and rigid. The back cannot bend at the point where the vertebrae are fused, but the surgeon says our son’s case can be treated now by fusing only three vertebrae. An argument for doing the surgery sooner rather than later is that postponing it would mean fusing five vertebrae or more — a longer stretch of our son’s spine would be rigid, so he’d have that much less flexibility. The surgeon says we should think it over, and let him know what our son decides, to confirm if he’d like to have surgery, and when.
My husband and I have the same worry about the upcoming surgery. Our son will be in the hospital three nights, maybe four. That’s longer than he’s ever been away from home, and our first thought is, What will he eat?
Parents of a typical teen might not give food a second thought, but our son has issues with eating. We know it’s connected to his autism — he has a strong need for familiarity and he has aversions to certain smells, textures, and tastes. We’ve become used to feeding him, we know what he will and won’t eat, but it’s a worry, he’s underweight. Despite our best efforts our son, who was 6’-5” tall before the surgery (and is 6’-6” tall now), weighs 140 pounds.
Our son tells us he wants to do the surgery right away, as soon as possible after his current quarter at school ends. The surgeon offers a date early in April, and he accepts. I don’t know if his decision indicates that he’s in more pain than we realized — it’s his nature not to complain — or if he just knows it needs to be done and there’s no reason to wait. That’s in his nature too.
I remember taking our son and his twin brother to get flu shots when they were five. We followed the nurse down a hall and into an exam room, and she asked, “Who wants to be first?”
I didn’t expected either of the boys to volunteer, but without hesitation this son did. “I will,” he said, and sat down in a chair.
I asked if he wanted to sit in my lap and he shook his head, lifted the sleeve of his tee shirt, and watched the nurse give him the shot.
Later, from the back seat of our station wagon he said, “I knew I wasn’t going to like it, so I made up my mind and just did it.”
As the date of the surgery grows near, I quietly panic about what our son will eat in the hospital. By now I’ve searched online for “autism AND eating disorders” and discovered something called ARFID (Avoidant/Restrictive Food Intake Disorder). I learn that a significant percentage of people with eating disorders are on the autism spectrum, and they’re more likely to have ARFID than the other disorders I’ve heard of before. I learn, treatment for people with autism needs to be different than it is for typical people, because their issues with food don’t stem from the same causes. They’re not concerned about their appearance, or trying to lose weight. Instead, they have sensory issues, or they may have fears of choking or vomiting.
I join a Facebook group for parents of autistic people, and am boggled at the number of posts about food. My kid will only eat french fries and milk… Mine eats nothing but chicken nuggets and potato chips… Does anyone know if I can get the MacDonald’s hash browns by the case?
I talk with my therapist, who’s sent me information about how to identify and treat ARFID. I tell her, I’m calming down, I think we’ll be okay. It’s not like he’s going camping in the wilderness. He’ll be in the hospital. They’re not going to let him starve. If we have to go out three times a day to get him mac and cheese from KFC, we can do that.
I reserve a hotel suite with a full kitchen close to the hospital, and we all check in the afternoon before the surgery. My husband stocks the kitchen with our son’s standards: frozen hash brown patties, canned chili, makings for rice, bean and cheese burritos, high calorie Ensure we can use to make milkshakes. We’re as ready as we can be, and we’ve talked to our son. He says he’ll try the hospital food, and we promise to bring him anything else he wants.
To be continued…
