Caring for those in Need

What Is Your Plan?

I want to tell you a story. Imagine for a moment you just had a new baby and you’re told that your new baby has a rare disease called Sturge-Weber syndrome, with which only 1 in 50,000 babies are born. The news is unbearable, and you try to wrap your hands around the diagnosis and what it could mean.

BY Julia Terrell | October 2020 | Category: Employment & Transition

What Is Your Plan?

It is overwhelming, and your mind is so stuck on what could go wrong. This little baby has no idea of what is happening, or what will happen but, as a parent, you have so much to think about. You begin to research, you begin to hire the right people, and without you knowing it a plan is born.

Fast forward to today. How many times in recent days, have you read or heard the words “In these unprecedented times…”? No one could have predicted this would happen. But here we are, living through a worldwide pandemic and all of the challenges it presents for everyone. The social distancing is starting to feel like social isolation, and everyone is wishing they could go back to life as usual. No group of people feels that more poignantly than those of us who live with or care for someone with special needs, or are already medically fragile. This five-month long interruption (with no crystal-clear end in sight at the moment) is taking its toll and affecting the health and well-being of an estimated 15% of the population. And when you add in the people who care for them, that adds up to a lot of people feeling the stress of a quarantine and an anything-but-routine schedule.

In addition to dealing with the interruption in services that we’ve all experienced over the last five months, a lot of us are now finding ourselves in the position of having to create back-to-school plans. Or one could even say back-to-life plans. Special Needs communities, whether a rare disease like the Sturge-Weber, or a more well-known communities like autism and MS, you know that there are so many moving parts. From the day our children and adults with special needs were diagnosed, we knew our lives would be different, and we learned quickly that we have to do more than other parents and caretakers. We have to plan, educate ourselves, and as I often say, “become a specialist or advocate” for our family member. What does that look like? It can look very different in each of our worlds, but here is what we have in common: we are all resourceful. We look outside the box, and when one door closes, we often ask “if we can’t do that, what can we do instead?”

So how do we prepare for the unknown? Well, it’s a bit of work, but the peace of mind it will bring you is well worth the effort. A plan has many moving parts. When you make a plan, you want to make a plan that is easy, understandable, and to be used over and over again. Let’s get started: What do you need to accomplish?

Step 1:

Define the situation you need to overcome. You can create a plan for anything, including but not limited to virtual school, or in-person classes, which is on everyone’s minds right now. The plan could be for a medical plan, or getting a job, going to college and more.

Step 2:

Make a checklist of what you need. When my daughter had a seizure, and I began to panic, I remembered that, thanks to my doctors, we had a plan in place. It all began with a list in my head of all the things that happened when I called 911 that day. A checklist is so important for many reasons: it will keep you on track, you can add and subtract steps as needed, and you have something tangible that allows you to go on autopilot if you need to. The checklist should be kept readily available for when it is needed.

Step 3:

Once the checklist is complete, make a list of who needs to be involved in your plan.

Step 4:

Talk to the new team and set up a time to train them and make sure they understand the importance of their role.

Step 5:

Make sure you have all the pertinent information and items (such as a binder) in one spot, like on the refrigerator, where everyone knows where it is. You may need several copies as well, depending what your plan is, as well as who are involved. For example, my daughter has her health plan in a bag with her medicine that she carries with her when she is at school, a copy in the nurse’s office and in the principal’s office.

Step 6:

Implement your plan and make sure everyone is bought in and understands what is asked of them.

Step 7:

Check in on your plan periodically throughout the year, to make sure it still makes sense, and update the plan where needed.

Step 8:

Check in yearly with your medical team, or any team that you work with, to keep the plan up to date and make necessary changes.

Step 9:

Retrain and refresh the team each year. In the example of a health plan, it is important to train the new teachers, or any time the team changes, so everyone is on board with the plan and understands the expectations.

Step 10:

Always thank everyone involved for taking the time to be a part of your team.

Funny enough, if you think about it, the rest of the world is now being forced to do what we have been doing every day. They would do well to look to us to learn about patience, and how to depend on themselves rather than on others, and honestly realize every day there are necessary risks to live, and how to avoid the UN-necessary risks. That is where this article began, because this climate is what we are good at doing what needs to be done, and we should all be proud to say we can do this. Now our environment is changing. Sure, it will be quite different from previous years, due to masks, social distancing, class size, lack of in-person services, and many other factors that we may not even be aware of yet. Now is the time that we continue to plan and evolve as the climate changes.

This plan can be used for any situation you will encounter. One more part of the plan that we haven’t talked about is YOU! Remember that no matter what happens, it is ok to be overwhelmed, scared, mad, and upset. Just remember the three-day rule: first day to wallow and have a pity-party if need be; the second day, to reach out for support, resources, and to get a plan or update your plan; and the last day, to implement the comprehensive plan to once again right your world and the loved ones you uplift! Take time to enjoy your family and yourself and take care of yourself too.

We will all get through this pandemic, we have to. That reminds me, when I am talking to a new family, I always say, “Congratulations on that new bundle of joy! I need you to take a deep breath and know it will be ok. Now let’s get you a plan in place so you can feel better!”

So remember, when you start to feel the uneasiness of this pandemic or any situation that seems so hard to overcome, remember take a deep breath and ask yourself “What’s Your Plan?” This will all be okay.  


Julia Terrell is the Community Relations Director for The Sturge-Weber Foundation. She currently lives in Southern New Jersey with her husband, Scott, and their daughter, Marissa. Together they love swimming, playing with their puppy, and planning for their future. 


The Sturge-Weber Foundation (The SWF) global mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through tenacious collaboration with clinical partners and pioneers, education, advocacy, research and friendly support. Support, integrity, and vision: These qualities have distinguished the Sturge-Weber Foundation (SWF) since 1987. Thousands of people have been served and continue to be served by the SWF’s one on one phone support, family networking program, education, physician referral service, medical education programs and research endeavors.

The Sturge-Weber Foundation is a 501 (c) (3) non profit organization with an ever increasing worldwide membership and is funded by corporate and private donations, grants and fundraising activities. In 1992, the mission was expanded to also support and serve individuals with capillary vascular birthmarks, Klippel Trenaunay (KT) and Port Wine Birthmarks.

Read the article here.