By Sandra Heidt, Parent Disability Advocate and ILLINOIS LEND Family Trainee
My name is Sandra, a 63-year-old single parent caregiver for a 21-year-old Autistic son, living with IDD and speech delay and this is one of my stories.
One day after a long, hectic week of school, work and providing for my son’s needs, I seized the opportunity to take one hour for myself which led to a walk in the forest preserve. Believe me when I say that day I was overwhelmed, mentally exhausted, and nothing could have been better than breathing the fresh air on a brisk, sunny day.
As I walked and looked at the cloudless sky while sipping my Starbucks, Grande, two extra pumps of chai tea with almond milk and whipped cream, I noticed a flock of birds flying around in formation. At one point, the birds formed a triangular pattern while flapping their wings and gliding in unison. Watching in amazement, I felt the need to stop walking and immediately sat on a nearby bench to gaze at this picture of beauty.
In awe, I began to wonder why do birds fly in groups? Why do they fly in formation? While sitting, my curiosity led to a google search which revealed that birds fly in formation and glide to reduce energy, show support, and protect each other. Also, flying in groups makes it easy to keep track of every bird because they help each other, work together, assist with communication, coordination and share common goals like safety, and sense of family. Right then I thought by comparison, this concept was quite like a peer support group which I had just learned about during class.
Digging deep within my thoughts, since my son was diagnosed with Autism, I always felt alone on this caregiving journey and, not for sake of trying, my immediate family was unable to provide support so, I championed it alone. Thinking a little further, during this training class; specifically, on the topic of “Person Centered Planning”, a question occurred where I wondered, who could I find to support me to plan and build my son’s quality lifestyle as it pertained to individuality, independence, choice, dignity, respect, and rights, PCP’s core values?
As long as I can remember, from Individual Education Plans, “IEPs” to medical and therapeutic appointments, supporting behavioral and/or mental health needs, and creating opportunities for social engagements, I did not feel like I had any support until I observed the flock of birds and understood their purpose. Often, I was in the habit of saying things such as, “I prefer to fly alone”, “ I can do this by myself” “I don’t need anybody” but watching those birds reminded me that as a caregiver in this disability space, everyone needs support. No one should glide by themselves because, if you do, you will find yourself constantly flapping your wings, trying to carry your own weight and that of the person who depends on you to get them from one place to another. Furthermore, complex systems and attitudinal barriers have made it arduous to get the support you need and without a network, it becomes harder and harder to fly. Consequently, just like the bird, you are forced to rest from illness, fatigue, stress, or depression. Instead of flying with a “flock of folks,” you find yourself falling deeper and deeper into “flying solo.”
I found myself shedding happy tears upon discovering that I had a ” flock of folks” all along, both individually and organizationally.
At that moment, I immediately thought of three people that have always been there for me. First there’s Kim, my mentor and friend who was always available to share resources, and information, guide me through my son’s IEP’s, transition, and support my journey toward disability advocacy. Then, there’s Tiffany, another friend who can make you laugh louder, smile bigger and live better when you are feeling at your worst; she brings me such joy. And finally, Jill, my untraditional sister, who is my rock that gives my son and I unconditional acceptance and love while guiding me to get further and glide more effortlessly.
This walk was exhilarating and met its purpose. Finding a peer support can empower you to; 1) build connections, 2) help each other understand your role as a caregiver, 3) re-define help as a learning and growing process and, 4) help you move toward what you want rather than what you cannot have while caring for a person with a disability. Having that “flock of folks” can rejuvenate your soul while giving you strength, balance, and stability.
If you do not already have peer support, I challenge you to find your “flock of folks” so just like me, you too can begin to soar. Connect with other parents through your networks, your church; ask one of the professionals to recommend one for you. If you live in Illinois, reach out to organizations like Chicagoland Autism Connection (CAC), Access Living, The Arc of Illinois, Family Support Network or Supporting Illinois Brothers and Sisters for siblings of disabled persons. They too can provide the educational, emotional, and social support necessary for you to fly. Most importantly you will be encouraged and empowered to practice self-care and manage your own health care needs for you to continue your journey caring for a person with a disability.
Until next time….”there is no exercise better for the heart than reaching down and lifting people up”. I hope my story lifts you too.
