A Letter to Our Pediatrician
We had an appointment with MJ’s pediatrician today to discuss her reflux meds and recent neurologist appointment. I left the appointment in tears and feeling utterly alone.
We first started seeing the pediatrician when she was about 18 months old for her ‘sensory’ issues and rigidities, he told us she would outgrow everything and they were just quirks. We kept pushing and eventually he sent us to an occupational therapist, more to appease and not because he believed there was anything to be concerned about. Within a year, the occupational therapist agreed that she was not outgrowing things and that in fact her issues, including sleep were getting worse and it was time to get some kind of diagnosis.
When we got the diagnosis – which was from a very well respected child psychologist who developed a lot of the province’s original autism policies, we contacted the pediatrician. We were told he really did not need to see or follow us at all for her autism and only if our family doctor felt there was a need for him to see her for something else, would he consider seeing her again. We told him the psychologist had said he was to help us with melatonin dosing, and were told he didn’t think it was needed. Our family Dr. was not comfortable helping us as she’d never worked with melatonin and children before and even the pharmacist did not want to advise us. We were on our own and I did oodles of research and lots of trial and error to find the dose that worked for her.And to this day, she can’t sleep without it. Her brain simply won’t shut off at night.
This pattern has repeated itself over the years with the pediatrician, so in hindsight, I suppose I am not surprised by what transpired yesterday. However, with our family doctor out on a long-term mat leave and a nurse practitioner who admits she knows little about autism – and is only part-time (i.e. 2 days a week and it takes 4-6 weeks to get an appointment) – I am at a loss for who will be championing and coordinating for MJ in terms of medical needs. I wrote the below letter to get my feelings out and am contemplating whether I should actually send it to our doctor.
Today when we saw you, you begrudgingly added another medicine for MJ’s reflux because our GI who is in Halifax said you had to. You made it clear you don’t really believe she should be on meds or that she really has reflux. That was hard to hear since you don’t live in my house or hear her complaints of green liquid, frequent night wakings, or vomiting episodes (some of which are migraine related, others are in the middle of the night and she complains of being woken up with green liquid in her throat before she tosses her cookies).
You then further went on to tell me that the social anxieties that she has are basically a result of her attending only a home-based daycare and not a pre-school. That you disagree with the school and our autism team’s recommendations that she start school off slowly, working up to full time. You told me you felt she was a bright girl and would do well, she simply needs a few weeks to adjust since she never attended a pre-school and that all would be fine. Again, you do not live in my house. You do not hear my child calling herself ugly while changing outfits, convinced people will not like her unless she leaves the house in a dress. You do not see her in ‘practice school’ unable to hold conversations or interact with kids her age. You do not see when she gets anxious over people getting too close, or noises being too loud. You were not there the day my husband picked her up and she promptly vomited because a peer tried to innocently kiss her.
You have not read her transition reports or progress reports that talk repeatedly about the fact that even in daycare she was unable to play cooperatively and spent a large part of her day in parallel play. Or the part where they identify her inability to make friends or understand how friendships work. The size of her daycare should not matter when you read that.
You are not in our house to witness the meltdowns that occur after a socially exhausting day or when things change unexpectedly.
Girls with high-functioning autism do not show the same signs of those with classic autism. I urge you to familiarize yourself with the traits on this list, of which my daughter has 23 of the 26 signs.
Our daughter performs in public, she puts on a show and loves 1:1 adult attention, she is the Queen of the fake smile, only to tell us later in private how upsetting, difficult and hard it was. And no we do not give her extra attention for these things, we’ve had autism parent training. She also does well with children who are significantly older, or those who are younger that she can mother or control easily. And no, her daycare is not solely made of these types of children, they are a mix of ages. In fact, when two new kids came on a trial basis, one of which will be in school with her this fall, MJ could not cope.
You may have noticed that she chewed a lot on her chewy tube, she does that when she’s anxious, in fact, I think she chewed on it for 80-90% of our appointment today. She has free access to the chew and only chews on it when she is anxious. She’s been observed by therapists and it has been reported that when she’s stressed there is a significant increase in this chewing. In fact, if she doesn’t have this, she chews the insides of her mouth until they are raw and full of canker sores making it painful to eat or brush her teeth.
With a year and a half of therapy under our belt, and (patting myself on the back), consistency at home in running her programs, many of her behaviours are no longer done in public. We have taught her (with the help of our ASD team) to control many of these behaviours, I’m sure you noticed she was taking some deep breaths while she was in your office. That’s one of her programs and it has worked very well.
Perhaps you would like to go catch her when she tries to bolt in public places and something unexpected happens or it’s too noisy (again we have worked very hard on this and it is happening less frequently now), or maybe I should call you the next time it happens, or perhaps if I don’t catch her, maybe we’ll be seeing you in the hospital because she’s run into oncoming traffic.
I am offended and saddened by your comments today and can’t understand how a pediatrician who is supposed to get ‘autism’ doesn’t get it with my daughter.
One heart-broken mother.