Yesterday we had Parker’s IEP. The elephant that was addressed:
WHERE to educate Parker.
The first thought was to bring Parker to school each day for an hour a day.
Not in a typical classroom, mind you.
Rather in a room by himself and a teacher/therapist.
For three months of the year. Then come December everyone would come back and do home hospital services with our Hero.
I balked at the everyday. So we settled on two days a week. But before the agreement was inked, it was pushed back up to three days a week.
There were questions as to why Parker couldn’t just come early each morning. Jokes were made about me not being a morning person. The reality is that Parker’s bolus feeds aren’t finished often until 9:00 a.m. Then come the inhalation and shaker vest treatments. And the meds. And creating that day’s blenderized diet. And a bath.
Parker’s day officially starts around 10:30 a.m., even though I am up by 6:00-6:30 a.m.
It was hard for some in the room to understand (believe me) about how important it is to keep Parker well. When this kid gets sick…..he gets sick. When one of Parker’s siblings get sick, they don’t hang out upstairs where Parker is. Instead they hang out downstairs or in their bedrooms…….away from Parker.
I often repeated what Parker’s cardiologist told us about sending Parker to school, and mentioned the fact that Parker is still alive because how vigilant we’ve been about keeping him away from anything that has to do with sickness.
I understand the need for Parker to see more of the world. But I’m not sure sitting in a classroom by himself is going to meet that objective.
This objective will be much better met by utilizing the Summer and Fall taking our Hero on field trips, inviting neighbor kids to play, and other activities along these lines.
There is a special education teacher willing to come twice a week. An OT willing to come once a month. And a speech teacher willing to come once a week too.
Reed has some reservations about this potential set up as well. If Parker’s right heart cath in July comes back worse, then we aren’t taking him to school…period. And the niggling knowledge of how easily Parker gets sick makes Reed wonder if taking him at all is a good idea.
Educating Parker at home will require that some changes be made.
- I won’t be able to work in any form or fashion, including online. Losing that money will hurt. A lot.
- I’ll need to take a room in the basement and turn it into an official homeschool room. Doing stuff at the kitchen table isn’t going to work anymore. Having the homeschooling stuff strung out all over the house is a total hassle. PLUS, having a room downstairs to go to will help give the feeling of ‘going to school.’
- When the weather is good, my Mom will come out once a week and present a lesson for Parker.
- I’ll need to gather a few more gross motor activities for Parker to do in our basement during the winter. We have a slide and a tramp. I’m thinking of a climbing castle and a basketball hoop. If you have any other ideas, I’d LOVE to hear them.
- My life will be spent at home even more than it already is. That can muck with a Mama’s psyche. I’m going to need to make sure I make myself exercise daily and take mental health days.
I know myself well enough to recognize when something refuses to settle into my heart that I’m not looking at a good decision. And that’s how I’ve been feeling about yesterday’s IEP.
Now I just need to set out a plan…..and stick to it.