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Posted By: millersb02 Finding 2e informed medical providers? - 02/13/24 08:24 PM
Hey!

My child is 2e. He has some deficits, a learning disability and more recently diagnosed auditory processing disorders. If you were to meet him for the first time, he usually comes across as gifted. Then when he does something you don’t expect, it’s confusing and each person interprets it differently.

Since he was very little, it’s been hit or miss with healthcare providers for him.

Most recently we’re having problems with an audiologist. When he had an evaluation the audiologist got irritated with him and scolded him for being sensitive to wearing headphones (part of the reason to be tested is that he has very sensitive hearing). And when the audiologist made recommendations for treatment, he didn’t take into account that he is intellectually more advanced and doesn’t want to do pre-school like theraputic programs. Needless to say, we need to switch providers.

Anyone have tips on vetting a medical provider for a 2e kid? His particular exceptionalities aren’t very common, so they’re not easy to explain quickly.

The group of doctors at our pediatrician’s office hasn’t been great either - not able to make useful referrals, jumping to conclusions about adhd meds that weren’t appropriate … maybe one of them is more 2e/neurodiverse affirming than the others. But how do I figure it out?
Posted By: aeh Re: Finding 2e informed medical providers? - 02/21/24 10:00 PM
Personal recommendations from others with similar provider needs is, of course, the best way.

But failing that, this can be quite difficult, since there aren't simple, consistent markers for this kind of expertise in a provider. So far, I've found the easiest approaches are to try to screen providers by proxies for giftedness, and to interview carefully. For example, in a provider's own educational history, diverse, interesting (e.g., not just the standard biology bachelor's) fields of study prior to medical school, or an additional academic grad degree besides the MD. Or a degree from a highly-selective institution (not that the right kind of person is limited to any of these educational markers).

And on interview, I'm looking for someone with intellectual curiosity, who dips into the research and practice literature on a regular basis, to keep current, in addition to in response to specific situations, and who appears inquisitive about multiple topics. Definitely (as one would always hope) someone who is sincere and proactive about collaborative decision-making with me as the parent, listens to both my child and I without condescension, offers their thoughtful and data-supported recommendations, and then allows me to parent.

(We love our current ped, who always cites research when making recommendations, and will give us options, each with their associated risks and rewards. They know we are quants and evidence-driven, and deal with us accordingly.)
Thank you for your thoughts. I need to build a mental frame work for choosing providers for my child.

This also made me think of a story. My child was early elementary aged. He was very sick and I took him to a pediatric urgent care. When the nurse was collecting info, she asked him some questions about his symptoms. He said he felt “queasy”. The nurse looked over to me and asked me “when he says he’s queasy, does he mean he feels nauseous?”. Multiply this situation times a million interactions between my child/the provider/me and you’ll start to get the picture of why finding a respectful, informed provider is important.

My next stop for an audiologist is the regional children’s hospital. We have prior experience with this hospital system and I can tell they train their staff to be thoughtful in their interactions with disabled children from a wide variety of backgrounds. Although, I haven’t had a situation where the giftedness is a major factor until now. There’s actually just 2 doctors that treat his diagnosis in the regional system, so that narrows things down quite a bit. We’re set up with one of those 2. I inquired as much as possible with the department scheduler to tell her a little about my son and what we’re looking for. You can bet I read the doctor’s bio… family centered approach, does research, open to new techniques, won an award for clinical practice. So fingers crossed this is a good fit.

Now that I read your suggestions, I’m realizing I already vetted some providers in the past and I can share ways I’ve done this:

* Instead of just getting a referral and going through the normal channels, I’ve reached out to the clinic director. I gave them a brief overview of my child and what we were looking for and asked them if he was a good candidate for their program. This pointed me to a therapist that has experience working with 2e kids.

* I scoured a local gifted organization’s website, they do enrichment courses for kids. they had a few recommendations for a psychologist that is familiar with gifted/2e children posted to their site

* our school district gifted coordinator hasn’t come out and recommended anyone to me (not sure she’s allowed to do so). But when I’ve shared a provider we were going to use, she clearly stated approval and trust in the provider.

* My experience is that offices that serve a broad range of children with differing abilities treat kids much more respectfully. They are open minded and don’t have set expectations for behavior. My other son is also gifted had a speech assessment recently. He’s very visual and moves/plays constantly. The therapist who assessed him allowed him to build an elaborate fort in the room while she assessed him. When I explained that I notice speech stuff on longer words when he reads, she was willing to find some words and listen to him do that (even though it is beyond the age level expectations). That flexibility allowed her to see the bigger picture and help us to have a plan to address his speech needs. Both he and I felt welcome and respected during the assessment.

I would love to hear how others seek out providers for gifted/2e kids. I now realize that this is important whenever I need to find a new provider.

I would also love to hear personal stories about providers interacting with your gifted/2e child, both good and bad. I often have experiences that feel uncomfortable at the time, and I later realize were subtly disrespectful.
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