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Parenting a Child With a Disability During This Pandemic


by Ellen Stumbo | Mar 19, 2020 

Many parents of children with disabilities are intimate familiar with the feeling of isolation. You may think we are already experts — that this feels a lot like our normal — except it doesn’t.

While our online support system remains, we have lost “the village” that helps us care for our kids.

Our school district canceled school this week, next week is our spring break. Our superintendent said, “There will be no instruction this week.” It means we haven’t done much learning yet, we are on an unexpected two week “vacation.”

This week was for teachers to make plans and figure out how to teach their students remotely. However, last Friday my oldest daughter said every teacher showed them how distant learning was going to work for their respective classes. Her teachers already had a plan, they knew this was coming and were ready. 

Perhaps there could have been remote learning happening this week — one week before spring break. Instead, students were encouraged to turn in their late work and use this as an opportunity to catch up (all students in our district have an iPad). 

However, I suspect special education teachers really needed this week to figure out how to best serve their students. Some students, like my daughter with Down syndrome, will not be able to access their education via distant-learning the same way her nondisabled peers do. Her teacher is creating learning plans for each student and targeting their individuals needs. She is also aware that her students cannot do the work independently, so she has to figure out how to help us — the parents — work with our kids on reaching goals and work on academics.

As soon as spring break is over, classes will resume remotely and the real work begins. I have one typical child who will thrive with this setup. She is the kid who will be able to learn at her own pace, get her work done, and have most of the day free to practice piano, learn to play the guitar, paint, write, read, read, read, and read some more. 

But I also have two kids who have several supports set up at school so they can best learn. I am now their support. 

Their only support. 

And the thing is, both of my kids will need one-on-one assistance for them to successfully make it through distant learning — and there is only one of me.

This is going to be really hard on all of us. I don’t have a teaching degree, I am not a therapist, and I don’t do great at explaining science or math. 

What are we going to do?

We are going to do the best we can. But the truth is, their education is not going to be ideal. Not to mention, school work is not the only thing we have to do. We still have a house to clean, clothes to wash, showers to take (yes, kids, even if we do not get out of the house we still take showers), three meals a day to make…

We once had a team, now I am a physical therapist, occupational therapist, and speech therapist. I am the teacher. I am the special education teacher. I am the principal. I am the paraprofessional. I am the reading specialist. And I’m also the mom. 

I am somehow responsible to keep afloat what takes an entire team of professionals to accomplish.

It is more than overwhelming.

And the days are harder when your child asks to get out of the house, “I want to go to the park and swing,” “I want to go to Target,” “I want to see my friends,” “I want to go to school!”

Many of our children with disabilities thrive on routine and their routine was disrupted with no time to transition. Now our routine-driven kids are expected to change their established routines at home and accept their parent as their teacher, therapist, and friend.

Our kids are being stretched, just as much as we are.

The truth is, there may be days when this feels like too much. So we are going to watch YouTube and sit down and color while we listen to a book on tape, because this new routine it is too much for us all.

 And I am going to be okay with that.

We will take this one moment at a time. Just one moment at a time.

I suspect there will be tears.

I suspect there will be battles of the will.

I suspect there will be instances when we will all need a break from each other.

But I also hope we get closer. I hope we become kinder with each other and more understanding of our limitations.

These coming weeks will be brutally hard, yes.

But we will push through — it’s what we do.

We parent kids with disabilities. We do hard things every day. This perhaps is harder than any of us suspected or were ready for, but we will get through it.

Dear fellow parent, we are in this together.

And thank goodness we have each other across the screen!


27.03.2020

All news:

Liberty in Focus on 7th Independent Living Day
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New EU COVID-19 response brings no guarantees for social services
Living Independently during COVID-19 Pandemic: Spain
EU invisible on social emergency of COVID-19
Parenting a Child With a Disability During This Pandemic
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Priority list
Towards the Elections
CIL Network Meeting



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