Friday, December 7, 2012

Tips for Parenting a Child With Special Medical Needs

This post was originally published as a guest post for the Natural Parenting Carnival on Becoming Crunchy last March. Now that I have nearly a year under my belt, I can tell you that these pointers still stand.

We were very lucky in that we got advanced notice that we would be having a child with special needs. We received Spencer's Down syndrome diagnosis about mid-pregnancy. I kind of saw this as having a new hobby thrust upon me.

Spencer's TherapySpencer's first therapy started with something
as simple as putting a toy in his hands.

I don't mean to make light of the situation, trust me. However, I now had a new passion to research. Isn't that what you do with a new hobby? Then I came up with a plan to manage his care. I put together a notebook with tabs for all the different types of problems he might have, so we could avoid overlooking anything. I added paper to each section and jotted down which tests he needed to have and when.

I'd been told that babies with Down syndrome don't really require much special assistance for the first 6 months. That isn't entirely true. Aside from low muscle tone (which is very common, but Spencer does not have), babies with Down syndrome tend to have small mouths. The reason this is a problem is that their tongues are not so small. They tend to thrust them forward and out. So far, Spencer doesn't do this too much, but he did need to work with a Speech Therapist when we were in the hospital. What? Speech? Yes, because they work with the mouth, not just speaking. It is hard to eat if you continuously push the food out of your mouth, ya know?

Spencer's Hearing Test in NICUSpencer had his hearing tested in the hospital and again shortly after leaving. He'll be tested again at 6 months old and then annually throughout childhood.

Spencer has required several extra medical appointments by comparison to "typical" children. (At 2 months old, he has already seen a pediatrician several times, a cardiologist, an audiologist, and has had 2 x-rays done, soon to be another. He also has blood-work to be drawn soon.) I had originally thought I'd purchase a Day Timer or other such calendar book, though I really love my Google Calendar. As a minimalist and being broke, I put off the purchase and never did get to it. Instead, I now print a month or two ahead (from my Google calendar!) and keep it in his notebook. This makes it easier to book follow-up appointments while I'm on site without the risk of double booking. You do, however, have to make sure to keep all calendars synced. I have to come home and immediately add appointments to my online calendar.

My quick tips, from my minimal experience parenting a child with special medical needs:
  • Sync your calendars!
  • Organize your specialists.
  • Find a pediatrician that is a "Medical Home1."
  • Keep copies of diagnoses and treatments for your own records.
  • Try to group your appointments in a way that works for you. We have NO appointments next week, it will be a nice break.
  • When you get overwhelmed, talk to someone! Get help if you need it.

Do you have some tips I'm overlooking? I truly am very new to this special needs job.


1 Medical Home is a style of management over chronic medical and behavioral conditions with compassionate care coordination. (Our doctor keeps close contact with all of the specialists we see and brings all their information together.)

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