For people who have a hard time getting answers for medical problems, meeting a new doctor can be a source for stress.

Here’s a poem from two perspectives on that first interview. A physician who is used to having answers for symptoms within a few tests. A patient who is used to being dismissed for not finding answers within a few tests. #Raredisease #zebras. This is common in the genetic disorder our family carries. I have Ehlers-Danlos Syndrome. Although it’s congenital, I wasn’t diagnosed until 2015.

Regarding Autism, when I felt my most impacted son didn’t have the correct diagnosis, (it was gross motor delay only), I felt similar feelings going into his second evaluation. I thought he had Autism. I’d done some grad school in language development and speech pathology and felt certain he was socially behind. The evaluator was a developmental specialist, licensed in social work or family therapy. She let me know she had a set way of looking at his case. He received ADHD, PICA, and adjustment disorder diagnoses, as I recall.

I hoped to understand why it was primarily ADHD. Her explanations didn’t fit with his level of discomfort, to me. He was going through so much. When I told her, she told me I didn’t understand enough.

I had a basic need to see a way for him to become reasonably comfortable, to feel competent in my job as a mother. She had a basic need to feel competent in her job. When two people are in a situation where they are at risk of not getting basic needs met, the way they cope can determine a treatment path.

It took two more evaluations and about 10 months of Early Intervention time that lapsed before he got the correct diagnosis of Autism. I have compassion for where those evaluators were at. And I wish their knowledge base or ability to hear me had been different. I have compassion for where I was at. In retrospect I want to say to myself “You’re right! stand up! Go to the next person!” But I know me best so I am the best person to cut me some slack. I was pregnant with sweet dude #3. I was moving/looking for a house/living with in-laws. I was on bedrest part of the time. It was hard for me to think I needed to get a second or in this case third and then fourth opinion! So I needed to process it a bit before rescheduling each time.

I pushed for answers because it’s how I felt and because of logic. I made a write-up to show my clinical observations – like a case presentation from grad school instead of a parent report – to see if it would help. In the end it just took a true expert watching him to know. Hooray for developmental pediatricians.

Oh that all problems had such experts!

Hang in there and enjoy the poem.