At the risk of sounding ungrateful, I am really falling out of love with my big, fancy, top-ranked Boston hospitals.
First on the list is Ellie’s feeding therapy. Oh, where to begin. So, we had a feeding therapist through the hospital. A Feeding Therapist! At The Greatest Pediatric Hospital in the Whole Wide World! What else could you want, right? How lucky are we?!
Yeah. Well. Feeding therapist at the hospital takes two months to get an appointment. Not just an initial one, but each appointment. I had a kid who didn’t eat, and I saw our primary feeding therapist about four times over the course of a year. At every appointment, she’d be disappointed at how little progress we’d made. And then offer advice that mostly boiled down to, “keep trying to feed her.” And me? I had no freaking clue what I was doing. I don’t know about you, but I’d never had to teach a kid to swallow before, so I don’t exactly know how it’s done. But I also didn’t know if this was just how feeding therapy goes, you know? How would I know what to expect?
Well, after months of frustration, I went to make another appointment with the therapist, only to be told that it was her last week at the hospital. No, “and we’re transferring her patients to this person,” just “no, sorry, can’t make an appointment for you. Like, ever. Bye!”
After a lot of screaming and swearing, I asked around for some referrals and found a smaller agency, closer to my house, with a feeding therapy program and called for an intake. We were evaluated in July, and started WEEKLY appointments last month. WEEKLY. EVERY WEEK. ONCE EVERY SEVEN DAYS. And not only that, but our New Feeding Therapist gives me actual, concrete advice and assignments, as well as what to expect Ellie’s reaction will be as it progresses.
For the first time, I feel like I’m actually doing something right when it comes to feeding. For the first time, I feel like someone is giving us the help we need. And it is ABSOLUTELY NOT coming from my super-fancy hospital. It is coming from a nondescript office park in the suburbs. That’s where the real stuff goes down.
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I ran into this phenomenon again, today. I got a referral from our pediatrician to get Daniel evaluated for attention problems. She recommended a great developmental specialist at another one of the Big Awesome Boston Hospitals, with whom she had trained during her residency. Great. Called today and asked to set up an initial evaluation.
“Oh, no. We don’t make initial appointments over the phone. I’ll mail you the packet of intake forms. After you send them all back, it will be about 4-6 weeks before one of the doctors can take a look at it. Then you’ll get a letter in the mail confirming the appointment we’ve given you. The wait for an appointment right now is about 6-8 months after the doctors read your intake forms.”
I shit you not. It could be JULY before we met someone face-to-face. I wasn’t expecting to get an appointment tomorrow, but the better part of a YEAR? Insanity.
So I checked out a private agency recommended by a twin mom friend of mine. I couldn’t bear another phone call, so I used the email address on their website to request an appointment. I got a call back within an hour. They had a cancellation and an open appointment tomorrow (!), but we booked for about two weeks from now.
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Look, great things happen at those Big Boston Hospitals. There’s a reason they’re so highly ranked and sought-after and all of that. If you need a new kidney or an experimental surgery or have some scary thing that only shows up in like three people every year? Big Hospital is great. Go there. They have amazing resources, technologies, and wicked smart doctors.
But if you’ve got a five-year-old who can’t sit still in class, or a toddler who needs ongoing, nitty-gritty intervention and therapies, community agencies and private practices are where it’s at. It’s too easy to get lost at the Big Hospitals. There are so many more urgent cases, and the doctors there are looking much more big-picture and long-term. When what you need is a great occupational therapist or speech pathologist to get you through the day-to-day practicalities, stay out in the ‘burbs. I just wish it hadn’t taken me this long to figure it out.
