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.
Why Is This So Hard?
The middle school has been pressuring us all year to get our son DJ back in person. Today they proudly claim they’ve had the Hoyer lift for months. This is what happened during the walkthrough…
- Where do we park? Oh, in back by the buses, blue handicap square.
- What if the buses are there? Come before the buses.
- How do we leave if the buses are there? No comment.
- Can Shannon go in with DJ? Absolutely, we just need to confirm…
- How does the wheelchair get in? This one door is on flat ground.
- How does DJ get upstairs? Elevator, with key.
- How does DJ use the bathroom (transfer)? We got a Hoyer lift.
- Can we test it? Not yet. No one is trained on it.
- Have you tested it? No one is trained on it.
- Do you have any kind of training materials? We have to call the guy in Warwick who installed it.
Not sure if they tested it, sling may be too big for DJ, not trained on it…
I’m just stunned… Literal MONTHS of emails to us saying, “We need DJ back in person…” but no one trained on the lift? No one called when they installed it saying, “Please stop in so we can size it and get trained?”
We’re 10 minutes away… No one bothered to check until we showed up?
The level of incompetence… No one went beyond “parking spot, level door, elevator, lift thingy over there”…Who spends that kind of money and doesn’t test it? Throw a sand bag in it and train a few people?
You can’t make this sh** up!
If DJ Had Gone…
And then it hits you like a brick wall, the beloved tagline always hits…”We’re responsible for the education of your child.”
Last week they wanted DJ in person for state testing and we said no (without knowing any of this).
If DJ had gone, there’d be no way for him to use the bathroom…
One checklist and a walk-through the week before and you’d know before DJ and Melissa were there that it’d be an issue. You might even have time to schedule the training, be the hero, instead of fumbling the “I don’t know”s and tanking an otherwise exciting tour.
DJ wants to be there…DJ is excited to go back. They left the impression pre-tour it would happen this week. Now we have to wait on training…
Why is this so hard?
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