I think we can all agree that when it comes to planning for our kids going back to school this year, we don’t know a lot. And what we do know changes. Even though we are all living in the same pandemic world right now, we are in different places geographically and we have different needs. It’s glaringly obvious that there is not a one-size-fits-all solution to this problem. As parents of kids with special needs or disabilities, this is not a new concept. We are not new to the world of assessing and advocating for what our children need. We are used to reminding the school that the goal is to create an academic program that works for our child, not to create a child that works for the program.
In our current pandemic world, I feel for our educators and policy makers struggling to figure out a model that will work for most. There are so many variables at play. I will not begin to dissect those variables because I’m confident we’ve all done enough googling to make our eyes ache. Depending on the day, I feel angry, frustrated, hopeless, or sometimes paralyzed. So what I would like to do now is take this time to remind myself, and you, of what we know and the tools we have to lean on during this transition.
1. Get comfortable with the uncomfortable.
Me: What? NO! I’m doing the best I can but I’ve been holding on and digging deep and I need to know how long this race is before I collapse.
Annoyingly positive friend trying to support…also me: Yes! That is 100% true. Absolutely no one will question that families with special needs are struggling. Remember you wrote a rant about it a few weeks ago (and could certainly write another one on any given day). But today let’s try to think about it in a different way. Today, let’s acknowledge that it’s hard, maybe even impossible, but try to step back and think about what else it is. Maybe it’s an opportunity to model self-regulation during chaos. When things feel out of control in your child’s world, when he feels like yelling or running away, what do you tell him to do? You remind him of the things that don’t change:
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You are safe.
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You are loved.
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You are strong.
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You are kind
This is what keeps us grounded. Let everything else swirl around you for the time being, and just stand still with your family until you regain some energy. Then you’ll dig deep again and keep going. And you’re likely to move forward with a better understanding of what that overwhelm feels like for your child.
2. Remember what you know.
Me: I literally don’t know anything about what this will look like. It changes all the time and none of what is being proposed will work for our family. I don’t know where to start because I don’t even have a start date.
Me again, on a different day: Remember when you had to quit your job to devote more time to supporting your children? Did you plan for that ahead of time? No. You responded to what was in front of you. Just like when you advocated at the IEP meetings or spent nights researching accommodations or supports. We don’t know the details of the school day. But we know our children. We know their needs. After being home with them during quarantine and possibly engaging in home-learning with them, we know them better than ever. Use that! If you have an IEP, go back to it and review those goals with what you’ve learned during this time. Find a social story or make your own. Dust off your IEP binder, think about what you’ve learned about your child over the last few months and add this fillable form to the front. To provide the teachers with more insight about how your child copes best, this worksheet will help identify their self regulation profile. No one knows more than you about how your child learns.
3. Find trusted sources to help you understand what you don’t know.
Me: So many sarcastic responses.
More stable me: Ok. I know, there’s a lot to sift through. Decide how you prefer to receive information, identify your sources and check in with them regularly. Follow your local school through social media. If you are in Massachusetts or Louisiana, we are gathering up-to-date information on our website and we send out alerts through social media. Follow us on social (links at the bottom of this post!) and check back with our website for updates on changing policies and school updates; here’s the link for Louisiana and Massachusetts.
4. Remember we are all doing the best we can.
Me: Are we, though? 🤔
Me: Remember the mantra for your son from a few paragraphs ago? You are kind. Lead with that. Take a breath. Assume people are making the best decisions they can for their family and for students given the information they have. It will keep changing. It will feel frustrating. People will respond differently. If you feel it’s impeding your family’s health, safety, or well-being, think about how you can get involved. Speak up at your community meetings and attend the town halls (virtually). We’ve never done this before. We’re creating the playbook as we go. Remember, you know your child best, start there.
It might not feel like a plan, but it is. You’ve got this. We’ve got this. Even on the days it all feels insurmountable, to us or to our children. At Exceptional Lives, as parents, we’re all taking this in too. So I will leave you with the video descriptive that best describes our collective feelings on the topic.
