I am writing to you as a member of the Government Affairs team for The Arc and in my most important role, as a mother of three.
Full disclosure, I have been a wreck since I heard the words “very contagious virus.” This crisis exposes my worst fears and vulnerabilities as a mom of medically complex children. Jumping into 24/7 caretaking has distracted me from some of my worry and helping out with our advocacy efforts has helped me feel a little stronger.
As parents of children and adults with disabilities, we are the fiercest of protectors, yet we are left fighting a battle that leaves us powerless. Our advantage here is that we are resilient, we are patient, and we know how to unite for support, for strength, and to affect change.
There are ways we can help our families, ourselves, and our community. Personally, I need to take time to organize our “new normal” for our home and schedules. I need to know that our basics are covered – medications are in full supply and favorite foods of my 6 foot tall, hungry teens are stockpiled!
I put my concerns into categories so I can address them without getting too overwhelmed.
So the big worry buckets for me include;
- How can I keep my family healthy and safe? What planning can I do with their medical providers now to be prepared?
- What is happening with their school programming? How can I get help? How can I keep my children and myself safe and still get support in my home?
- How can I keep my family socially connected?
- What is happening in our state to address my family’s complex needs?
- What can I do to make sure our national response to this pandemic included support for families like mine.
The first three buckets relate to communication – this, we can do. Call, zoom, write – stay connected to your support systems, your medical team, your education team, and your community supports. If you are not hearing back, reach out to your local Family Support Center (they are doing amazing work).
Reach out to me at The Arc if you are facing barriers that seem insurmountable: Sullivan@arcmass.org
The next categories are about obtaining accurate information and making sure your voice is being heard by our state lawmakers and administration as well as our national leaders.
The Arc is posting daily updates here www.thearcofmass.org and action alerts as well. In the last week, The Arc US pulled together over 30,000 calls and letters to Congress and we will need this grass roots effort to become even stronger. Follow us on social media and use #weareessential with photos of your loved ones when you reach out with advocacy efforts, and tag us too!
Besides keeping safe from this virus and managing behaviors that can be unsafe… I aim to breathe deep, to stay connected to this community, to keep smiles coming from my kids, and to ask for help. I hope you all stay healthy and strong and connected to The Arc.
Stay tuned because the team at The Arc is putting together a schedule of open question and answer sessions, self-care, tips on managing school from home, and of course national legislative updates, news from the MA state house, and action alerts.
Director of Government Affairs