by Basilisa Perkins, mother of 2 and public health educator in Broward County, FL. Advocate for her girls and, at times, homeschool teacher to her daughter with special needs.
The stress level of parents of kids with special needs is comparable to that of a combat veteran. Though stress is a normal part of “adulting,” the demands of life, work and parenting, can create excessive levels that are toxic to our health (even more so than other risk factors for chronic diseases).
And, that toxic level is what my family has lived with on and off in our journey of raising a child with a brain tumor, and her older sister.
We are not unique. We’ve met so many families like us who are coping with their children’s medical and behavioral issues, or the related financial burdens. We have witnessed each other make treatments or medications decisions; watched our children struggle with illness and school; and even grieved with those who’ve lost their child. Nothing compares.
For me, stress comes in the form of worry, fear, isolation, sadness and a complete sense of being overwhelmed. My husband would say his experience with stress feels like high levels of anxiety, not being able to sleep well, and an inability to focus. None of it is healthy and none of it helps our family survive.
We’ve learned a few things that’s helped us cope with the stress.
Seek support from the parent community
Over the last 12 years we have often sought support from parent support groups, online or in person. It’s uncomfortable at first to attach words to the feelings, and then saying them out loud. But, it always helped us to feel less isolated to hear from other parents dealing with similar issues/concerns.
Consider getting mental health counseling for yourself/family
There were times when we also needed individual/family counseling. I know it’s tough to squeeze it into your schedules, but I can assure you it’s worth the time and effort.
The message you get from people around you when your child is struggling is not always helpful. Things like, “You’re so strong” and “I don’t know how you do what you do”. This is simply not true. A diagnosis doesn’t come with a cape and super powers.
What is true is that I sometimes need to speak to a mental health professional (something I had never done before my child’s illness). It was scary. But it helped me, and by extension, it helped my family.
Just say NO
Just say no to people and situations that add nothing but stress to your life.
In 2009, my daughter had an unexpected week long stay at the hospital. It upended our life once again. We were scared and worried. I had also made a commitment to organized the Box Tops for my older child’s school that same week.
This sounds crazy, but I started to feel stressed and guilty about having to let the PTA president know that I couldn’t do it because we were back in the hospital. Truth is dealing with the demands of PTA is normal stress, and I wanted that type of stress more than anything in the world. But, life wasn’t normal and it was too soon to expect that I could be a PTA mom.
I sent the thousands of unorganized Box Tops back to school and I didn’t apologize.
It sounds pessimistic, but it helps to expect less; to be realistic about what you can handle.
Ask yourself, “What is the most important thing I can do today?” Then, cut down on the demands you’ve put on yourself. I’ve also learned to expect less from others, whether medical professionals or teachers, friends and family members. While these same people are an essential part of our family’s support system, they’re only human too.
I love this quote from Anne Lammott–“Expectations are resentments waiting to happen”.
Reconnect with your curiosity and interests
Our children’s issues demand a lot of our attention, time and energy, which makes it even more important that we reconnect with what makes us feel deep joy.
Put something on your schedule this week that is just for you. Whether it’s sitting down with a cup of tea and a good book, taking a walk in the woods, or playing your instrument, pencil yourself in. If something brings you joy, makes you curious about the world around you, makes you feel centered and calm, then make it a priority. Start with something small, but do it consistently and in time you will see how much it helps to bring you balance and clarity, and reduce your stress levels.
My child has special needs. I have to be my best self for her, and her sister. Toxic stress will rob you of precious time.