“We’re Responsible for the Education of Your Child” Part 2

by Shaun, a Duchenne Dad

About the Author:

Shaun is the father of 11 year old DJ. DJ has Duchenne Muscular Dystrophy and is in 6th grade.


“We’re Responsible for the Education of Your Child” Part 2

Wednesday Night

The school called that evening asking that Melissa and DJ to show up the next morning (Thursday). They wanted to train staff with DJ and the specialist.


Thursday

Melissa and DJ arrive and the specialist who installed the lift was there. It’s not just the wrong size; it’s the wrong sling. He needs a bathroom sling. They’re not sure if they have it in stock, but it’s a 2 hour drive.

The Principal is there. He claims they couldn’t train without DJ. Melissa asks why they didn’t use a sand bag? Specialist asks why an adult couldn’t sit in it for training? More “I don’t know” dance.

The Physical Therapist is there. She’s concerned because PT is in the basement, which is not wheelchair accessible. She blames us saying we didn’t give a return date.

Melissa is polite, but points out that you don’t need the kid to put a plan in place. They pressured us since school started to be in person… why wasn’t a plan developed then? Even more “I don’t know” dancing.

The Aide wasn’t there, and she was the one needing training.

The Special Programs Director wasn’t there, and she’s responsible for training.

So Principal got trained (wasn’t supposed to, but good initiative) and PT got trained.


Friday

Friday morning, the Assistant Principal calls us.

The Aide quit. She pointed out that the posted position never listed the physical requirements. She’s older, didn’t feel comfortable with the lift.

School is now going to use his old aide who’s actually moving away in a month. Mix of excitement (we love her) and sadness (knowing she’s moving). I’ll spare you the history but we had to fight each year to keep her as his aide! They’re very close.

The Assistant Principal says the PT drove down yesterday to get the right sling.

The Aide is being trained today.


Monday

DJ will be in person Monday.

Now we need a drop off/pick up plan… yeah…


In case you missed it:


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