What a cynic I’ve become, that when I meet someone with true compassion for LuLu that I’m taken totally by surprise. Especially when I meet that person in a place I didn’t expect…like wearing a doctor’s lab coat.

Yesterday I took LuLu to the pediatric gynecologist. I was both anticipating and dreading the appointment. Our pediatrician referred us to this woman because she has the background of treating girls with autism and Downs Syndrome and would likely understand our dilemma surrounding LuLu’s period and the impact it made on her trauma triggers and hormone swings. Still I was skeptical.

It was hard to get an appointment, and when I tried to discuss my concerns with the office assistant making the appointment, she quickly said that the doctor was familiar with all types of girls with disabilities and would “get it”. This didn’t calm my fears, because, after all, LuLu is an interesting combo platter. And I’ve heard “don’t worry” from plenty of professionals who don’t know squat about how trauma impacts all those other disabilities.

So, I did the only thing I knew to do, I typed up my concerns to take with us yesterday. This is a tool I use with our psychiatrist, typing up the things I need to tell her, but things that might cause LuLu to become agitated if she hears us talk about them during our actual appointment. The technique worked this time as well. The nurse practitioner and doctor had both thoroughly read my note prior to meeting us. In the note I asked that an exam NOT be done unless it was ABSOLUTELY medically necessary. And I described that she has some very strong trauma reactions around the whole issue.

The exam room had a table with stirrups, which fascinated LuLu completely, and there was a gown laid out waiting for her. This made me a bit nervous, but she was intrigued by it and by the toys, mobile and Dora the Explorer puppets on the stirrups. The fact that the room looked like a set up for younger children (“Some of this stuff is for babies, Mom.”) calmed her, and me too, frankly.

LuLu immediately asked the nurse practitioner what the gown was for. It is for you to wear if you want to, was the reply. She did, so we put her in it. I was still a bit apprehensive about whether they would comply with my no-exam wishes or not. But I needn’t have been. The doctor breezed in and quickly said she was surprised (and glad) that LuLu had tried out the gown, but that she wouldn’t be needing to look at LuLu’s privates on this visit. LuLu grinned from ear to ear.

Then, for the next solid 30 minutes, this doctor listened carefully to both LuLu and me. She patiently answered LuLu’s questions (many of them having little to do with the reason for our visit). She so totally validated LuLu as a human being that I was overwhelmed. “You are a very smart young lady,” she commented. And LuLu is, which is part of the dilemma, so much intelligence held captive by disability.

Then, this doctor said something that will endear her to me forever. She said she would be writing letters to all the doctors on my daughter’s treatment team. She said this with no prompting from me. I hadn’t asked her to, and I hadn’t used the words “treatment team”. But through the course of the conversation, she had learned that we work closely with a psychiatrist, a DAN! doctor and our pediatrician (who referred us to her). I had to fight the impulse to jump up and kiss her for offering such a thing. In turn, I assured her we would get her the results of LuLu’s recent hormone testing and put her in that communication loop. She offered to call immediately if any of the results indicate that the pills she prescribed will not be appropriate.

On the way home from this appointment, I burst into tears. I had steeled myself for a possible battle, but gotten complete understanding instead. I couldn’t believe it! I was so grateful and relieved. Then, as I bawled like a baby (and confused the heck out of LuLu), I realized how truly sad it is that I should have had to been so guarded and worried about all of this. It is definitely a learned reaction for years of having to do battles and search for the right people to be on my daughter’s “treatment team”. To have a professional so readily offer herself was such a foreign experience.

I’m still thrilled…yet sad it has to be so rare. Finding a professional willing to set aside power, money, ego and instead offer up compassion and understanding, is a rare find indeed. But should it really have to be?

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