Friday, September 29, 2017

Preserving Energy as a Parent of a Child with Special Needs

©  | Dreamstime; modified by me

I've been saying "no" to a lot of things lately.

Last school year, I was a member of the Parent Committee (similar to a Parent-Teacher Association or Organization) at my son's school. At the beginning of this school year, I had to tell the school's director that I would no longer be a member.

Why? Because it was costing me energy. 

As a member of the Parent Committee, I was reviewing school policy documents and fielding questions about school policies from fellow parents. While the time commitment wasn't huge, I knew it would be more than I could comfortably handle this school year, especially considering that I need to plan for an upcoming move back to the United States. I'm glad I was able to help out on the committee for one school year, but now I'm happy to let someone else take a turn.

Last spring, I took my son to physiotherapy sessions after school once a week. In early September, I had to tell his physiotherapist that we would be quitting.

Why? Because it was costing both my son and me energy. 

The appointments were right after school, and my son was often tired. I would sit in on the sessions, and the physiotherapist would give me tips on exercises to try at home and toys to purchase that would promote my son's development. While she had nothing but good ideas, I was struggling to implement them at home. We have about 3-4 hours from the time we get home from school until my son goes to bed, and a lot of that time goes towards after-school down-time (because my son and I both need it), a walk or two outside (because my son needs it), dinner, and his bedtime routine. Any extra time usually goes towards working on language and fine-motor skills and having unscheduled let's-be-silly-together time, leaving little time for the physiotherapist's ideas. I'd then go to the physiotherapy appointments with a lot of guilt, which was eating into brain space that could have gone to something more productive.

And, yet another "no": One recent morning while my son was at school, I was sitting in a lobby that I frequent near his school, writing a blog post. A mom of one of his classmates approached me to chat. I said a quick "hello, how are you?" and then said I needed to get some more work done before picking up my son.

Why? Because I knew that chatting at that moment would cost me energy, whereas writing would give me energy.

Did I feel kind of bad saying "no" to these people?

Yes, I did. I genuinely like the director of my son's school and didn't like that I was putting her in the position of having to find someone else to sit on the Parent Committee. And I felt bad quitting our afternoon physiotherapy sessions because the director had put in time and effort to help set those up for my family, and because the physiotherapist was quite good and would now potentially need to fill our therapy spot. And I felt bad saying "no" to a chat with a fellow mom of a child with special-needs, because I know what it's like to be new to a school and new to the special-needs journey.

But who needs my time and energy morethem, or my 4-year-old son with cerebral palsy?

Of course the answer is my son.

If you've ever spent much time around a child with significant special needs, you know that taking care of them can take a lot of energy.

In my case, there's the physical work of carrying my son up and down the steep Dutch stairs in our house and of supporting him on walks when he gets too tired and his balance is off.

There's the mental work of trying to understand what he's trying to communicate to me and of managing all of the administrative work regarding his care: setting up appointments, filing health insurance claims, emailing therapists, applying for support...

There's the emotional work of processing difficult news and of dealing with each seizure as it comes.

I'm not saying all of this to complain.

I'm just saying that, as a parent of a child with special needs, I've learned that it's really important for me to preserve energy when I can, to say "no" when I can to things that cost me energy so that I have sufficient energy to give to my son. 

And, for this same reason, it's really important for me to prioritize (when I can) things that give me energy, like writing. And sleeping. And exercise.

I'm by no means perfect at this (see: exercise; see also: writing and sleeping). 

But, I'm trying.

What are some things that you've said "no" to recently? I'd love to hear your answer in the comments section below!

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