Wednesday, July 5, 2017

Recognizing That I Need Help | 
I've been feeling overwhelmed lately with balancing special-needs parenthood with my work.

I usually work at least part of the time while my son is at preschool, as a freelance medical writer and editor. My freelance income helps my husband and I afford our son's schooling (there are no suitable public schools for him where we live, so we pay private-school tuition), and the work itself is fulfilling and an important way for me to do something productive outside of my child.

But sometimes it feels difficult to fit work in around my parenting responsibilities.

My son didn't have a full day of school at all last week: On Monday, he had an early-afternoon appointment with an occupational therapist to discuss getting him a special tricycle; Tuesday was a "study day" for teachers, meaning the kids had no school; Wednesday was a half day as always; on Thursday, he had an early-afternoon appointment with his rehab doctor to have his ankle-foot orthotics checked out; and on Friday, his school had an early-afternoon summer party, which I felt obligated to attend so that I could monitor him during lunch. (He has food allergies, and I needed to check which foods brought in by other parents were safe for him eat.)

I took him to all of his appointments, and since his babysitter wasn't available last week, I was responsible for the extra childcare every day until my husband got home from work, usually around 5:45 p.m. Childcare in the afternoons is exhausting because my son wants nearly constant attention from me and his favorite thing to do is "go" (his word for walking), while I often just want to rest.

A typical scenario: I'm sitting on the couch, reading something on my phone or computer, and he walks up to me and says "go."

me: "You go."
him: [stares at me] "Go."
me: "You can go."
him: "Go." [grabs my hand and pulls on it until I get up]
me: [deep sigh] "Okay."

And of course, I had an editing assignment due on Tuesday night. (I didn't think to check the school calendar before setting that deadline, so I didn't realize my son was off school that dayoops!) Plus, our U.S. taxes were due on Thursday, and a sample edit was due to a client on Friday night.

Because I was taking care of my son so much during the day, I ended up working on these things a lot at night. By the weekend, as you can imagine, I was feeling pretty depleted.

This past week was not quite as crazy, but it was still a whirlwind of...trying to find a dentist for myself, trying to arrange childcare for the summer, filling out an application for funding for me to take my son to and from school by public transportation (and gathering supporting documents), and trying to work on an editing assignment due next week.

And on Thursday my son had an appointment at his pediatrician's office in the morningfor a vaccine, I had thoughtand an appointment to get fitted for new ankle-foot orthotics in the early afternoon. My plan was to take him to school after the first appointment and have him stay there for about 1.5-2 hours before picking him up to take him to the second appointment. In the meantime, I'd work on my editing assignment at a nearby coffee shop.

But the first appointment turned out not to be a short appointment for a vaccine, but rather, a lengthier check-up appointment with his pediatrician, with weight and height checks, plus wait times. (Curse the silly appointment card we got in the mail that simply said "vaccine"!) By the time we were done, it no longer made sense to take my son all the way to school and back, as he'd be there for just an hour.

So I went down to the hospital's coffee shop and got some coffee to-go and then fed my son a snack. I contacted the school to let them know he wouldn't be there. Then I begrudgingly walked home, pushing the stroller for 10 minutes in the blaring sun.

When we finally got home around 11:15, I thought I was going to lose it. It was so hot in our house (like most houses in Holland, it doesn't have air conditioning), and I thought I'd be stuck there all day, and I hadn't slept much the night before, and I needed to get some work done but knew I wouldn't be able to while taking care of my son. Gaaaaah!

But then I had an epiphany: Maybe I can reschedule the afternoon appointment and take kiddo to school for his lunch and afternoon activities.

I called the orthotics center. The next available appointment was in 2 weeks. The braces take 3 weeks to make, starting with that appointment. Five more weeks in tall leather braces that have got to be uncomfortably warm in this heat? I couldn't do that to my son. 

Tried on sandals over his braces, because maybe they would be less warm? Decided they looked pretty silly and I couldn't do that to my son, either.
The sooner he can get his new braces the better; the new ones will still be tall, but they'll be open in the front, so more comfortable in the heat. With the help of my husband, I decided to suck it up and keep the appointment.

On Friday morning, my family's social worker met me at my house. I had applied for funding for a personal aide for my son at school, which his school and I have agreed he needs, as well as funding for respite care, and she wanted to talk to me about the status of those applications. The gist of the meeting was that she needed additional information from both me and the director of the school before she could give me any answers. She left me with a "Daily Routine" form to fill out, which would clarify my family's need for respite care.

As I was writing up my daily routine, I recognized an endless cycle of work, childcare, appointments, special-needs-related paperwork, and more work, with little quality alone time (e.g., spent reading or writing), which as an introvert, I need in order to replenish my energy.

I had originally asked for just 3 or so hours of childcare on weekends during the school year, but it became apparent to me that I could really use some help after school in the afternoons, when my energy is at its lowest.

And so, I asked for it. 

Hopefully I'll get the help I need.

Disclaimer: The events described herein actually happened in mid-June. I wrote that they happened "last week" and "this past week" because when I started writing this blog post a few weeks ago, those time frames were true. I kept those time frames for ease of reading.

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