It's been a while since last I posted, mainly because we've spent the last few months planning a move, moving, and settling in.
Back in March we started planning a move from NYC to Vermont. Apart from the usual, there was a lot to think about and a lot of details to work out. The biggest headaches have been getting J's Early Intervention services set up and getting her into the pediatrician.
Our new services coordinator is lovely and very knowledgeable. She's been following up with us and keeping us in the loop, but I started this process back in April and our therapists are still not established. I'm getting antsy to start J's therapy sessions because she's already been out of therapy for over a month.
The pediatrician has been a painfully long process, too. The highest recommended pediatrician practice in Burlington recommended we go elsewhere because of how long it takes them to register new patients, so we're going through the University of Vermont Medical Center. Our appointment is coming up next week, but it was scheduled almost a month ago.
Thankfully, her new pediatrician was kind enough to refill J's topirimate prescription (her insurance wouldn't cover a prescription written by a New York doctor, and a month's worth of the drug is over $400 out-of-pocket), and she also referred us to the local neurologist, without having to see J first. Her neuro appointment is also next week.
Those have been the negatives of moving. I didn't realize any of these things would take as long as they have and it does worry me a bit. J needs to have an vEEG this summer, and needs to also be referred to an ENT and a pediatric ophthalmologist, the latter of which I've been told does not exist in Vermont, so we will have to go out of state, which her insurance may not cover.
The positives, however, are many! Our place is twice as big, so J has a lot more room to move around. We also now have stairs, which have been great since J is not being seen by a PT right now. We try to get her climb up them by herself at least once a day.
There's tons to do around here, too, all outdoorsy stuff that we didn't get to do in NYC. Yesterday we took J to a beach on Lake Champlain. The day before, we toured the Ben & Jerry's ice cream factory, and over the weekend we took J to the ECHO Leahy Center, to which we got a free membership through the Vermont Family Network.
Also, since we've moved, I've been staying home with J, so at least in the absence of her therapies, I can work with her every day and monitor her progress myself, as opposed to relying on a daycare teacher to take time to focus on her and accurately report back to me how she's doing.
A lot of people back in New York wanted to know why the heck we decided to move to Vermont? The answer to that is, I am hoping to go back to school to study Early Childhood Special Education (BS), and Physical Therapy (DPT). I trust I don't have to explain what inspired me to do that.
Another reason for moving is that I grew up in a rural area and have always known I wanted to take my family back to nature. NYC is a great place to raise a child, but it's not for us. We could never dream of owning a home there, it's too expensive, and I really want J to eventually have a yard to play in. We may not stay in VT forever, but we probably won't move back to the city, even after I'm done with school.
For those considering moving with their special needs child I would recommend the following:
- Reach out to the E.I. organization where you're moving to a few months before you do. You can get all the paperwork done ahead of time to minimize the wait.
- Find a pediatrician where you're going well before you move. If you're going to be switching insurance, you can give your current insurance at the time you register your child, and update them with your new insurance at your appointment. Even in rural areas it can be difficult getting an appointment because, although there are fewer people, there are also fewer doctors.
- Request a copy of your child's medical records from your pediatrician and specialists a few weeks before you move, so that you don't have to wait for them to fax the records to any new doctors you want to get your child established with. It's better to have them in your hand. That way, too, you can scan them and keep them on your computer.
- Make sure you are aware of how much of your child's medication you have on hand and whether you have any refills. You can have your pharmacy transfer the prescription to a pharmacy in your new town, but be aware that your new insurance may not cover a prescription from an out-of-network doctor (another reason to make sure you have a pediatrician appointment set up for shortly after you arrive). Luckily, we were able to get J's new ped to write a prescription for us, but the insurance company had recommended that we take her to the ER for a script (don't even get me started on what this says about the state of healthcare in this country).
As far as the actual logistics of moving a home and a small child, we had my folks come to New York to help us out. My dad and my husband packed the truck while I packed up the house and my mom watched J. Then my mom drove her car with J and me, and my dad rode in the moving truck (which we rented) with my husband. All the better if you just hire movers! But we didn't have a car, anyway, so even with movers we would've needed a solution for getting ourselves up here.
J's still kind of on her developmental plateau. Since last I posted, she has learned to drink her bottle while sitting or standing (still not standing without support of furniture), and she has started trying to stand up away from furniture, but she doesn't quite have the balance yet. She does have the core strength, though, and if we hold her hips when she's on her hands and feet, she'll straighten to standing just using her trunk! We're working with her on the balance. She's learned how to use some of her toys properly. She can pull the string on her See-'N'-Say, which never ceases to impress me. She's crawling very fast now, it's hard to keep up with her! She's clapping, now too. It took her OT six months to teach her that. She doesn't really do it because she's happy, though, it's just kind of like, suddenly it occurs to her to clap and she does it. But she's starting to explore the function of her hands and trying to move her fingers individually. It's funny to watch her sitting in her high chair, gazing in awe at her opposable thumbs and bendy index fingers.
Most importantly, J continues to be a happy and [otherwise] healthy kid. She smiles and laughs, she's goofy and silly and we love her to pieces!
Our goals this summer are to get her into some playgroups with other kids her age, and practice, practice, practice walking! Her PT told us she'd be in good shape if we can get her walking by her 2nd birthday. We're optimistic while not getting our hopes up. I'm not sure if I think she'll be walking in six months, but you really never know! She went from barely holding her head up to crawling in just six months last year. This kid is so strong, you can't put anything past her.