So, dental challenges have gone hand in hand with James and autism to make teeth cleaning and appointments constantly on my radar. In fact, dental care issues are a common refrain with parents of children on the spectrum.
When he has younger, I'd have to have him lie down on the sofa, sometimes having to pin him down, to properly floss and brush. When he got older, this became harder to do. Luckily at that time, James did not like sugary things in general. For a year, we shared our house with another family, and James joined in the junior tooth brushing and flossing sessions.
Then came the stressful, distressing, constant changes ... and a new like for Starburst candies and Sour Patch candies. Enter cavities and worse. James underwent sedation dentistry and his first adult molar removal. We moved to a new dentist for older kids and families, and for a time James increasingly tolerated x-rays and cleanings.
Then it came time for more sedation dentistry. We found a new location for this, much closer to home. Yay, no 3-hour round trip for a day of wait and sedation and wait some more.
Less than a week before his appointment, COVID-19 shut everything down. By the time I could get him in to the dental clinic again, his teeth had gotten very much worse. I am not going into details here - 2020 and the beginning of 2021 saw compressed stress and sorrow really hard life changes and loss over an 8-year period of time explode within the confines of lockdown and a pandemic (plus hormones). I did try to prevent it. I did ask for help, but there was none at that time.
Meanwhile, back at the clinic, less than 10 minutes into the sedation, I was asked in to speak with the doctor. This is never a good sign. The top teeth had deteriorated past cleaning and fillings. The only thing they could do was to pull them. All of them. I asked if some could be saved? Yeeessss, came the answer, but (1) they did not offer endodontics and (2) they either had to fix everything in one go or do nothing. My call. I told them to wake up James, we were not pulling his teeth.
Thus began a quest for middle ground to save James' teeth.
Again, not going into detail here. Suffice to say there were a lot of regretful head shaking and "not it" responses to my search through dental offices, multi-specialty offices, endodontists, his healthcare, autism agencies, James' schools, past dentists, the Regional Center, and ABA. Lots of tears and frustration on my part, particularly when James' teeth hurt him and all I could get was recommendations for ice packs and ibuprofen. Lots of calling in circles, with agencies and dentists recommending in circles that went nowhere.
Actually (and worse than nowhere), I made a dental appointment, after explaining special needs, severe dental care needs, and sedation dentistry needs and seeming to get a green light. We were kept waiting, then James took a lot of x-rays, more waiting, for the dentist to walk in and announce he did not treat special needs or do sedation dentistry. This was infuriating as this cost us time, money, and insurance benefits with no dental care or hope of dental care. The 3 referrals given to me went nowhere. The others offered were places I'd already called.
This all changed today.
My sister-in-law, who has a background in health care/caregiving and has been getting to know James better, was able to talk with her dental specialist and come up with a new referral that can actually help us. Our first meeting was today. We have a dental exam under sedation set for next month, with possibly some work being done at that time. There will be more sessions. It will be costly. But James will have the treatment he needs, not what is convenient for programs or clinics.
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