I knew the clock was ticking on the amount of time we could continue to see the pediatrician. I have a complicated child and and my relationship with the pediatrician was close and we’ve had an excellent rapport. Because of our long history together, we could make decisions based on past experiences and trust was high. The thought of moving on was terrifying.
I reached out to the pediatrician, friends and the developmental disabilities community for recommendations on someone who ‘got’ our kids. Some people felt that the care of our kids with significant developmental disabilities was no different than the medical needs of typical people. I disagree – at least for Ethan. Sometimes to care for him we need to do things differently. Most of the time, we have to think outside of the box. 6 minute office visits will not work for us.
Doctors received VERY LITTLE education on specifically caring for people with genetic disorders like Down Syndrome and most have very little experience in caring for people with autism, mental health issues and behavioral disorders. Doctors caring for this population also need to be very open to the opinions of conscientious caregivers who’ve developed a lot of knowledge and opinions. Many medical professionals can be disconcerted by educated parents.
I tried a local ‘Developmental Disabilities Center’ that was supposed to specialize in the medical care of people with DD/ID. It was a far cry from the care that we are used to with good private insurance. It was very much a clinic setting that assumed I was a member of Ethan’s ‘staff’. Ok, so I guess I am. I was disheartened before we were even seen with highly disorganized office staff that lost our paperwork and application twice before it was hand-delivered by a real staff-member of Ethan’s day program as a favor. I was not pleased with Ethan’s first appointment there. He was very much just a number in a practice that provided very ‘check box’ care. I also believe the 30 minute ride was going to prove, over time, to be way too far and tedious with the amount of time we see the doctor.
I needed someone who had a high ‘human’ factor to their medical practice. I changed my tactic. I asked two docs I had access to for the name of someone in the giant, NJ medical provider who had a reputation for being ‘nice’? Who had a reputation for compassion? The same name came up twice.
I was pointed to a female doctor who had a reputation for her charitable work in foreign countries. Ah! Human. I also prefer female practioners who are mothers. I was thrilled by the fact that her practice is “Family Medicine“, so it encompasses newborns to older folks. The office had a very different feel to the clinical ‘Internists’ office I had also tried. Bingo. She was comprehensive, patient and immediately picked up on some clinical issues that needed attention.
Transitioning from pediatric care to adult care has been very stressful for myself and for Ethan. It felt like getting pushed off of a ledge and I do feel like we were free falling for a little while – we ended up in Urgent Care three times (which is not optimal for Ethan) because we were in limbo and it felt really awful.
I am feeling good about this choice. I think we are on the right path. It has not been easy getting here – we re-routed several times! But we will proceed and I’ll let you know how it goes.