Preparing for the Next Crisis: Your Circle of Care
Marie S. Paxson
Can you really prepare for your next ADHD-related major hurdle or upsetting incident without suffering needless worry or forecasting doom? Well, yes… and no. In the words of Mark Twain, “I've had a lot of worries in my life, most of which never happened.” Since none of us has a crystal ball showing what the future holds, we need to find a balance between preparation for potential rough spots and pointless worry.
Do you find yourself constantly anticipating the next unpleasant surprise? That type of stress can be so bad for your health. There are supports and strategies that you can put into place in advance. You can create a path toward responding instead of reacting. You can create a “circle of care.”
A circle of care is an advance plan of action. If you research circles of care, you will find several examples of how to use a strategic method to design an advance plan of action. For this article, my CHADD chapter leaders—we are board members of Chester County/Main Line CHADD, near Philadelphia—used the four-step model shown here, because it is simple and easy to implement at a time when you will have trouble thinking clearly. (This model actually pertains to hospice care, but can be adapted to any situation that requires a thoughtful and deliberative approach that can be mapped out in advance.)
The circle of care model
As you can see from the model, the people and the resources that will guide you through your next disturbing incident have varying degrees of meaning in a crisis. But all can play an important role when trouble strikes.
For instance, when you first receive bad news, you may call someone in your inner network. The people in your inner network would be close friends and family who will drop everything to listen to you. They already know the background of what you are dealing with. They may provide suggestions or act as a sounding board as you think out loud. These are the ones who can help with on-the-ground support like providing meals, running errands, accompanying you to appointments, or making phone calls on your behalf.
Keep in mind that your inner network is not an indicator of intimacy. Depending on my emergency, I sometimes omitted my sisters, with whom I am very close, because I didn’t want to upset them. Rather your inner network is a group of people that you can count on for different things.
When the time comes to make decisions or take action, you need to get into a different headspace than right after hearing bad news. That is when you turn to your outer network. These are people or resources that can help, but for whom you need to provide more details (which can be difficult to discuss). Because this group has more distance from your situation, they can provide practical information or suggestions that may be more effective than those from your inner circle.
The community circle may be an individual or organization that has experience with your particular emergency. They have the deep, specific knowledge that you need for your next steps. Be sure to look for emotional support for yourself as well as referrals for professional help.
Finally, there is service delivery, which means you are at the finish line. These are the professionals that will help you take action. Note that on the model this step is followed by policy—an optional step after things have calmed down. For example, if you ran into any service roadblocks or gaps when seeking resources, you may want to voice your concerns or begin to advocate on behalf of others who will walk in your shoes. This action could result in policy change.
How this benefits you and your family
In my early adulthood, I was a champion at worried anticipation—thinking that if I guessed correctly about a potential danger, it would be less of a shock. Very few of my projected horrible incidents actually occurred, and I wish I had spent my time on other things. When a major incident I had foreseen became a reality, I was just as heartsick and agitated as if it had happened out of the blue. My fretting hadn’t really accomplished anything.
So, what are the benefits of having a circle of care in place?
- Your circle of care will remind you that this is a process to be worked through. When upsetting incidents take place, they may feel permanent and all consuming. Unlike happy events like a wedding, dream vacation or reunion when you planned for months and then the occasion just flew by quickly, during a crisis, the time will feel like it is going so slowly. And it is very hard to see where the end will be.
- Your circle of care will let you make the most of the support you have. Our family had many back-to-back difficulties. I once noticed some people were avoiding me, and considered me “Calamity Jane.” I bounced between oversharing and isolating and people were sick of hearing about it. I realized that I was using my friends and acquaintances as therapists; it wasn’t fair to them, and it wasn’t working for me.
- Your circle of care will reduce your stress—and this will be good for your immediate and long-term health.
- Having a circle of care in place can enrich your daily life and increase happiness and balance.
As you will see from the stories in the sidebar, there is no right or wrong way to do this and you can make changes at any time. You will find that there is flexibility about who fits in what ring depending on the situation. You can even use this format for other aspects of your life. To help get started, you may create or print out your own blank circle to fill in. We would love to hear your experiences after you set your circle of care into motion.
The Circle of Care Model in Action
Here are some examples of activating a circle of care:
When my daughter was 17, she began to spend more and more time at her friend’s house. I became more and more wary of how much supervision the teens were receiving. I suspected that before long my daughter would move in with them and refuse to come home. My therapist suggested I contact the police to find out the process for having her brought back home. The police told me, “You are the parent and she is a minor. If you need us to intervene in order for her to return home, we can do that.” At that time my daughter and I clashed frequently and just my presence seemed to trigger outbursts, so I then asked, “Would I have to be there?” The officer replied, “We are not a taxi service!” While I could have lived without the sarcasm, at least I knew the lay of the land. (By the way, I never had to do this).
My friend Elise’s son, who has ADHD and co-occurring conditions, could be volatile at times. Elise’s husband traveled for work frequently. She had a feeling there could be a showdown during his absence. So she contacted her neighbor, Mike, and relayed her worries. She asked Mike for help. He agreed that if Elise had to call the police about her son’s outbursts, he would come over and wait with her and stay until they left. Just knowing that two adults would be present if trouble erupted gave Elise reassurance. (Elise never had to do this. Her husband was with her during the one time that they needed assistance from the police.)
NOTE: Phil Anderton and Steve Brown, British law officers and frequent CHADD conference presenters, recommend that parents give thought in advance to whether the parents themselves should go to the police station if their child is detained. A friend or family member may be calmer and less likely to say things that could work against the child in court.
Jillian’s son, Marcus, was having academic struggles and she dreaded opening emails from his teacher. At her first school meeting, she felt overwhelmed by the jargon and description of special education processes. Jillian felt the key to getting the right supports put into place was to get professional guidance. She recalled that parents at a CHADD meeting had discussed free advocacy services in their community, so she made an appointment. Within days, her knowledge and confidence increased. Marcus now has classroom accommodations. By including an advocate and her CHADD chapter in her circle of care, Jillian is prepared for whatever lies ahead for Marcus in the classroom.
Can a circle of care become too big? Just ask Lisa. Her son’s difficulty at school was getting worse. Her circle of care containing therapists, tutors, advocates, special afterschool programs was effective, but appointments and phone conferences took up a lot of her time and energy. Lisa came to the conclusion that a private school could manage Alex’s ADHD much better and it would free up her schedule. After all, she wanted to be his mom, not his case manager! The family’s revised circle of care is now smaller and more efficient.
Marie S. Paxson has spent years as an advocate for people living with ADHD—as a parent, a past president of CHADD, a local chapter leader, and as the former chair and a current member of Attention’s editorial advisory board. She has been instrumental in CHADD’s work to influence federal policy, even testifying at a US Department of Education hearing on special education law. Fluent in the findings of science and research, she also understands the practical day-to-day issues facing those affected by ADHD. She is certified in mental health first aid.