I read the best post today from a mom in our Down Syndrome-Autism Connection Support Group on Facebook. She wrote about the long journey it took to be able to cut her son’s hair and clip his fingernails without a huge fight, but now at age 25, he can calmly sit through the procedure. It’s a story every mom of a DS/ASD child knows. It takes a lot of time and patience for our children and adults to accept a new routine.
I could really relate.
But it wasn’t clipping nails and cutting hair I was thinking about. It was getting Matt’s teeth cleaned and checked. When Matt was little, he would sit in a chair for a few minutes and tolerate the dentist looking in his mouth, but as he got older, bigger and stronger, and the autism became more prominent, he became impossible to handle. He would push, shove and fight, bruising himself and anyone that got near him because he didn’t want anyone touching him. We tried giving him sedatives to calm him down before his appointment, but he would throw those up in the office when we got there. Once we tried laughing gas, but that didn’t even phase him. We ended up wrapping Matt in a papoose board while our sweet pediatric dentist, Dr. Lisa Stemmel, tried to check his teeth with Matt screaming and crying, scared and traumatized by the whole event. She was never able to clean his teeth or do any fillings – it was all she could do just to take a look and make sure his teeth were okay.
At that time, we were caught between the devil and the deep blue sea because Matt was too young for Medicaid, and even though we had good dental and medical insurance, neither would pay for putting Matt under anesthesia in the hospital. Dr. Stemmel took up the gauntlet and worked on getting a bill before Congress requiring insurance companies to cover in-hospital dental work in Colorado. She asked me as a parent to help by testifying before the House and Senate on what we went through with Matt and why we so desperately needed this bill, and I did. It took two years, but in 1998, Governor Roy Roemer signed the bill, and Matt was one of the first patients to go into Children’s Hospital and benefit from this new law.
And that first time was an experience I’ll never forget. It was all new to Matt – going without food or water in the morning, wearing a hospital gown, putting on special socks, and rolling his bed to the operating room with him sitting in the middle because he wouldn’t lie down. We were asked to go into the actual operating room with the staff to help handle Matt because we weren’t sure how he would do. It was a good thing we did because when the anesthesiologist tried to put the gas mask on his nose Matt quickly grabbed the mask and was waving it around gassing anyone who got near him. It was total chaos for a few seconds with several of us trying to grab for the mask while others were ducking down or backing away from the bed. I remember Dr. Lisa yelling, “Ack, I smell gas!” before she dropped to the floor. Fortunately, not because she was unconscious, but because she was laughing and trying to avoid the mask. Nurses were scattering across the room, giggling and backing far, far away. It took three of us to get the mask away from Matt, but finally we did and the doctor was able to give him enough anesthetics to put him out.
I was exhausted, but relieved when I went into the waiting room, and probably a little gassed myself. The procedure was a success, and our good dentist was able to clean, x-ray and check all his teeth and gums. We were also able to get other tests done that Matt couldn’t handle while awake, like an Echocardiogram and EKG for the Cardiologist, a flu shot, and a blood draw for his primary care physician, because Matt didn’t do shots or needles either.
The next year we did it again and Matt didn’t handle it any better. He refused to get in the bed. So, we let him sit in one those doctor’s chairs with wheels, which he loved, and when the time came, we wheeled him down the hall to the operating room. This time we were a little savvier and Matt was given a liquid sedative before he was taken to the operating room. He was loopy enough to not mind the mask and this time he was the only one who got gassed.
Gradually, over the years, the hospital visits have become a routine for Matt and the fights and upsets have stopped. He has always taken his security blanket with him – his Piglet puppet, and Piglet even gets to go into the operating room with him. Once Piglet even came out with a big bandage around his head.
This past week, we went into University Hospital for Matt’s dental and “everything else we need to do while he’s under” checkup. We usually do it once every two years, but we were a year behind because of Covid, however Matt hadn’t forgotten a thing. He had no problem getting into a gown, putting the bright yellow socks on, and staying in the bed while he and Piglet were wheeled to the operating room. Matt no longer needs a sedative, and I don’t have to go with him to the operating room, but Piglet is still by his side.
When Matt came back to recovery, the doctors came in and told me what happened in the operating room that had everyone laughing. The anesthesiologist was holding the mask, asking Matt if it was okay to put it on him when Matt looked up, grabbed the mask, and put it on all by himself, like “who is this guy and why is he bothering me?”
Without a doubt, Matt and Piglet are real pros now. It took time, patience and some anesthetics, but a new routine is now established!
Carolyn Anderson Jones 