Going to the dentist isn’t anyone’s favorite activity, I suppose. Stephen isn’t fond of it. Over the years I’ve tried a variety of dental situations: when he was small and “holdable” I took him to a dentist that would give him light sedation (Versed) by putting the medicine in his nose. Yeah, it sounds bad but it worked – and he couldn’t spit it out. Anyway, that went fairly well back in the day. He would get kind of drunky and I could then hold him still enough (usually by sort of sitting on him) to get his teeth cleaned and checked.
Cue a growth spurt. That dentist was only authorized to dispense so much Versed, and before long, that smallish dose didn’t work anymore.
So, I found out about the Sparks Dental Clinic at UAB, where they see special needs patients. We started out slow, trying to acclimate Stephen to the dentist, hoping for the kind of step-wise success we’ve seen over the years with haircuts. I did social stories and pictures, and slowly Stephen got a little more used to going into the exam room, and with much wheedling and coaxing and dental students literally on the floor, upside-down, getting glimpses of his teeth, we “went to the dentist.” This pseudo-dental care was working well enough, I guess – I kept telling myself that I’d keep an eye out for problems (a cavity or somesuch) and IF something happened, well, the Sparks Clinic folks assured me on more than one occasion that they’d just “have to handle it.”
Uh huh.
Perhaps, looking back, I should’ve been suspicious on our very first visit to Sparks, when Stephen refused to go from the waiting room to the exam room, and the staff stood there and watched me struggle to half carry, half drag my large child, that maybe that whole “we help special needs families” claim wasn’t all it was cracked up to be.
But anyway, as long as Stephen wasn’t having dental problems (that I could see) I kept trying their easy-does-it approach. Every few months we’d go through the motions.
Until about a month ago, when I noticed that Stephen’s left canine adult tooth was coming in, and the corresponding baby tooth wasn’t loosening up as others had done. He’d had a few baby teeth that lingered after the adult teeth started coming in, but literally within days of the eruption of the adult tooth, the baby one would give up and come out.
So, I called Sparks to tell them that it seemed we had a problem that was going to need taking care of, as they’d promised me repeatedly that they could handle. They suggested oral sedation. After a couple of weeks of back and forth phone calls, and even a doctor visit, we couldn’t agree on a good choice for oral sedation that would give us the best chance of success. Stephen doesn’t respond well to being forced to take meds, they often have the opposite effect intended, and then he refuses to take his nighttime meds because he’s suspicious. It’s a slippery slope. At one point I was facing having to give Stephen an injection MYSELF, and hope that it would calm him.
As I’d observed on prior visits, Sparks does have some papoose boards for restraining patients. In case you don’t know what those look like, here’s a charming artist’s rendering of a papoose. It’s a padded board with attached velcro/fabric “wings” that wrap around and hold snugly.
That child looks blissfully content, possibly even asleep.
I had seen papooses at Sparks, but we never had a reason to use one…yet. I had pretty much decided that we were going to have to convince someone to agree to putting Stephen to sleep to get this tooth out, and the Sparks folks said that they categorically did NOT do general sedation. I did some research and found that UAB Hospital’s Dental School had a pediatric clinic – the website said that they handled “difficult” cases, and often referred children for general sedation if the situation warranted. I made phone calls, talked to a very nice lady who told me to bring Stephen and that she was almost sure they could help, and if they couldn’t, well, they’d refer us to an oral surgeon. The lady even mentioned papooses and she said, “We’ll help you!”
Music to these old ears, let me tell you. As the parent of a very special kid, there is nothing like hearing someone who is not related to you and therefore not obligated say, “I’ll help you.”
So, the weeks passed with much trepidation and fluttering of stomach, and when the day arrived I got Stephen to his appointment, we waited half of forever, and then we were called back. We met with a very petite student dentist with a soft Chinese accent who asked me the standard questions and then said, “Well, let’s see about getting that tooth out.” She led us back through a maze of dental chairs and said, “Okay, Stephen, have a seat.”
You might have difficulty imagining the dumbfounded look at my face at this point. Other staff members gathered and the litany began:
“Stephen! Here’s a little truck! Now have a seat!” “Stephen, look at this mirror! We’re going to brush your teeth now! Sit down.” “Hey, Stephen, want a sticker?”
I stood there for a few minutes and then finally said, “I went INTO DETAIL over the phone when I made this appointment about how difficult this was going to be. He is NOT going to fall for any of those tricks. He is terrified. What about the papoose board?”
Muttering and shuffling of feet. Glances at each other. Someone said, “Well, get the release so she can sign it….Mom, are you WILLING to sign a release?”
AAAAGGGGHHHHHH…. “Give me the paper. I was willing to sign it 20 minutes ago. I TOLD everyone beforehand he was going to have to be restrained. I just NEED HELP.”
I tried to lead Stephen back to where the board was now set up. He went to the floor. Finally, with the help of three students, we picked him up and carried him to the board. A very brief struggle later, Stephen was tucked peacefully and safely into the papoose. It’s not easy to see your child trussed up, at least at first, but while he fussed a little, and wiggled a little, overall…HE WAS FINE. He calmed down. David had suspected that he might feel oddly comforted by the pressure, and I believe he was. It isn’t the answer for everyone, but I was so thankful that these contraptions existed at that moment. Stephen’s teeth got a thorough cleaning, they were able to see that he has no cavities, they numbed his gums and pulled his tooth…it went unbelievably well. I was in tears – relieved, a bit sad at the overall situation, but mostly relieved. And I kept thinking…These people HELPED me. Now, I can bring him here, get him on the board, and we can take excellent care of his teeth! I was so happy. A problem, solved. Love it. I kept thanking everyone, over and over, tears of relief on my face. I kept saying, “The people at Sparks wouldn’t help me like this! They refused!” and the UAB folks said, “Huh…but they’re specifically aimed at helping special needs people.” I told them that’s what they say, but… “That’s why I’m here! You guys told me you’d help!”
Then…as we gathered ourselves to leave, someone rejoined the group to say, “Oh, we called Sparks. It turns out that a while back, an adult patient who was being restrained got loose and kicked a staff member. So now, their policy is that the caregiver has to do the restraining.”
That’s the policy of the Special Needs Clinic? I shook my head. “Well, that’s counterintuitive, isn’t it?” I was so happy with these UAB folks, and we were all buddies, just having a chat as we walked out of the clinic. “I mean, if someone needs a papoose to begin with, it sort of goes without saying that some assistance is going to be needed, right? Wow, that’s crazy.”
We rode down in the elevator to check out at the desk. As we approached, the dental student who had taken care of Stephen said, “So, he doesn’t need to eat or drink for 30 minutes because of the fluoride treatment. He shouldn’t have any bleeding from the extraction. So we are requesting that for his next routine appointment….he’ll need to be seen at Sparks.” And we arrived at the checkout desk.
I had my dumbfounded look on again. “But…you all just saw that the papoose is the KEY for Stephen! And at Sparks, they won’t help with that! It took FOUR people to get him into it… How are we supposed to manage that?”
She avoided my eyes, “Yes, well…at Sparks they are set up to have the time and resources to…”
“But…you JUST saw what was needed for him! And you’re telling me they won’t DO that there!”
“I’m sorry but we don’t have the time or staff resources to see Stephen on a regular basis.” At this point the receptionist chirruped, “So, we’ll see Stephen back in six months?” The student muttered, “Ummm…no, we’re referring him to Sparks,” to which the receptionist bleated, “Oh, Sparks!!! Great! So, mom, what else can we do for you today?”
I was in shock. I felt like I’d been handed a million dollars, then had it snatched away. Someone had solved one of my problems, then taken the solution back. You just don’t DO that to people so desperate for help. I was in tears again, but these were born of frustration and anger.
I summoned up as much gumption as my depleted resources would allow, and said, “No, there’s nothing else you can do. I appreciate what you all did today, but knowing that we aren’t welcome here again is very hurtful and frankly it makes me angry.”
Receptionist: “Oh, it’s not that he’s not WELCOME…” Dental student: “No, we want to help…but…”
I looked at them levelly. Neither of them could finish. Exactly. No answers were possible. I understand that nobody who works with difficult patients wants to be kicked or scratched or head-butted by those patients. But when a clinic advertises a certain kind of help, putting unrealistic limitations on that help is downright cruel to families who cannot manage alone.
So. The tooth is out. Stephen’s teeth are clean. We know the papoose is the key. But my heart is bruised. I was shown compassion and understanding, I relaxed and felt thankful, then me and my little guy were unceremoniously shown the door with the admonition not to return. Not a great feeling.
I’m going to keep fighting. I’m going to get in touch with the Dean of the School of Dentistry. I’ll write letters and make phone calls and I’ll figure out something. I’m trying to glean the positives and move on, but there’s nothing like being taken to the top of the mountain…then pushed down the other side.
