Sunday, September 21, 2014

Managing a Special Needs Child

Please read my previous post When Life Comes to a Stop for the full story.

I sit here in my kitchen not hungry and exhausted from the past couple of weeks. I know I need to eat, but I also need to write. This is harder than I ever thought, and yet I know that I have it so much easier than many other families.

We are home from the hospital, and my older three kids are back home from an unplanned extended stay with Grandma. I'm glad to be home, but part of me is still stuck in that hospital room. I'm up every 4 hours dealing with medical equipment to feed Baby Girl. I hate the sound of all those beeps, and Big Girl does too. Since the girls share a room, her sleep is often interrupted with feedings. I'm just thankful that the boys are sleeping through the night still. I treasure the silence much more because it means everyone is actually resting.

I'll be honest, we haven't gotten back to school since Baby Girl was admitted to the hospital. I'm trying to figure out how to fit it all in. I say "it all" but I know it will be just a shadow of what we'd been doing. I'm thankful I have such voracious readers because that gives me hope that their schooling won't be compromised. I also am continually reminding myself that walking through this time with Baby Girl is the best education they could receive. I know as they grow and ultimately enter adulthood that it will not be all sunshine and roses. How we all do during this time will prepare them more for life than any lesson they can learn from a textbook. Isn't that some of what homeschooling is all about?

I know we can't move forward without a plan. You read a few weeks ago all about our scheduling. Thankfully we had a bit of a loosey-goosey schedule going on anyway. Now I have to figure in Baby Girl's feeding schedule. She is "eating" every 4 hours, and each feeding takes approximately 45 minutes to complete.

So onto our new schedule (at least on paper)!

9:00am - The 3 big kids have free time until I get up around 9am (yes, I'm sleeping in longer due to the interrupted sleep) and call them up to get ready for the day.
10:00am - Baby Girl eats and I pump. Sometime around 10:45 we head downstairs for brunch if Dad didn't already grab them breakfast.
11:30am - Morning Routine
12:00pm - Lunch. After lunch, we do any lessons that need my direct teaching.
2:00pm - Baby Girl eats and I pump. Boys go down for a rest while Big Girl works on independent work. About 2:45, I get some quiet time. Once independent work is complete, Big Girl will quietly entertain herself.
4:00ish - When Big Boy gets up, we will work on his math & phonics, which need my direct teaching.
5:00ish - Once Baby Boy gets up, it's time to cook dinner.
6:00pm - Dinner. While the family starts eating, I am setting up another feeding with Baby Girl. Instead of pumping this time, I'll eat with the family.

Evenings are used for Baby Girl's physical therapy, any "homework" the big kids may have to finish, and any additional rest I need to grab. There are 2 more feedings overnight.

I'm new to all of this, and the new, more structured schedule is quite exhausting for me. The boys also don't do well with the new amount of non-structured time for them. I'm sure within a few days, we'll all get into a good groove, but for now I feel like a zombie.

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