A Mom Shares Her Story of How She Found Hope Caring for Special Needs Kids

More than once over the last three decades, Jan Stewart has thought, I wish I could crawl into a hole and disappear, as the 70-year-old has cared for her two children who both have multiple special needs. Being consumed by helping them optimize their lives and plan for the future leaves the Toronto native riding a rollercoaster of emotions that bounce from despair, fear and helplessness to hope, pride and awe and back again. Here, Jan tells her story of caring for special needs kids in her own words.

Jan's story of hope

“From almost the time both of our children were born, my husband, David, and I knew that something wasn’t right. But it took nine long years of doctors continually discounting my concerns before both were diagnosed with significant mental and developmental issues.

"My son Andrew, now 36, has autism, Tourette's syndrome, OCD, ADHD and learning disabilities as well as cognitive limitations that leave him unable to care for himself responsibly.  My 34-year-old daughter, Ainsley, also has Tourette's syndrome and ADHD along with severe mood and anxiety disorders.

“Though frightened, I became consumed with giving them the best possible life, and have spent countless hours consulting with psychiatrists, psychologists, researching medications and therapeutic approaches, working with educators and advocating in the public realm, which has left me little time to nurture my own personal relationships.

“The silver lining has been the relationships I have developed with other caregivers of children with similar issues: we form a wonderful community of support, empathy and acceptance and lean on one another. The old adage about ‘walking in my shoes to understand my journey’ really rings true.

Related: Overwhelmed by Caregiver Stress? Here’s How Humor Can Heal

Facing stressful moments

“Still, the stress can be debilitating. Dealing with my children’s different health crises, the times my husband and I disagree about an approach to one of their problems… when family members give unasked-for advice or are critical or judgmental… when friends distance themselves due to lack of understanding, fear or stigma…

"In the beginning, those moments left me hurt, confused and, sometimes, feeling betrayed, but I have learned that it is a no-win to try to educate them or engage in lengthy discussions. Instead, I try to change the topic and, if that doesn’t work, excuse myself. Sometimes I go into another room, close the door and silently scream. And sometimes, though painful, I shed 'friends.' I simply lack the emotional cushion to devote to anyone who’s not there for me 100%.

“For many years, I wasn’t even there for me. I ignored my own physical health needs. I didn’t bother taking needed medications or seeking treatment, and eventually paid for it with significant problems, ranging from high blood pressure to breast cancer.

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“I now know how important self-care is, for both my mental and physical well-being so I exercise regularly, try to adhere to a healthy diet and carve out time for myself, away from my husband and kids, whether it’s going for a 10-minute walk, feeding my passion for genealogy by working on my family tree or soaking in a soothing bubble bath. And I try to be kind to myself, forgiving myself for my mistakes and reminding myself that I am strong and resilient.

“Of course, I have days when I feel down. There have been times when I have asked myself, ‘Why me? Why us?’ and have become despondent about my own future. There was a period when I didn’t care if I died as I saw no happiness ahead. But I’ve gone to church and prayed. And I find strength in the good times and the strides my kids have made.

Related: The ‘Three Good Things’ Approach Is The Simple Balm You Need If You’re Burned Out

Love works miracles

“Today, both Andrew and Ainsley live on their own, near us. Ainsley is self-sufficient but Andrew requires supervision (his dad helps prepare his meals, oversees his medications, ensures that he tidies up, etc.) And, thanks to inclusive employers, both have jobs.

“Many people with special needs have great difficulty finding and keeping meaningful employment; the statistics are alarming (50-85%+ unemployed in many studies). The fact that Andrew has a good job at a telecommunications company fills me with pride.

"And Ainsley…there was a time I doubted whether she would graduate high school, much less university, but she did it and is now a Child and Youth Counselor in the school system working with children with autism.

"Knowing they have fulfilling lives gives David and me comfort as we look to the future. Realizing we won’t be here forever, we’ve developed a comprehensive family financial and personal care plan that we regularly revise and update to ensure continuity and security for both of them.

"In the meantime, I will continue to love, support — and enjoy my children.

“Andrew and I have lots of fun together going out for dinner and watching movies. Ainsley and I love taking long hikes with her dog, Emmie Mae. I sleep over at her condo most Friday nights, and we giggle like schoolgirls and cuddle with one another.

“I too, have grown. My life has evolved into one of hope and empowerment. I am a mental health and neurodiversity advocate, who has sat on major non-profit Boards and Advisory Councils, and the author of the book Hold on Tight: A Parent’s Journey Raising Children with Mental Illness. At my core, I am a warrior mom, and no matter how severe the stresses, strains and crises, I pick myself up and persevere.”

Bonus: 3 ways to add self-care to your day

“We’re always caring and advocating for our loved ones, but we also must remember the importance of investing in ourselves,” says Bayo Curry-Winchell, MD, MS, Health Advocate and founder of Beyond Clinical Walls. As caretaker for her father before he passed away from kidney disease, she suggests caregivers set a goal of taking at minimum 10 to 15 minutes for themselves every day.

We know how hard that can be, but here are three caregiver-centered products that can help you in that effort.

1. Try a heated massage

If you're feeling rundown, spending 10 minutes relaxing on a chair massager has been proven to improve depression and combat fatigue. Try one with soothing heat (like the Snailax Shiatsu Heated Massage Cushion).

2. Enjoy a luxurious bath

Deliciously scented Mom Bombs bath products were created by a mother who's also a caretaker. All proceeds go to provide other caretakers with everything from free meal delivery to laundry services.

3. Reset with meditation

To fight stress, anxiety and despair, tune into a simple guided meditation on the Calm app. It even has specific sessions geared toward caregiving, like Daily Calm Caregiving by Tamara Levitt and Daily Jay Caregiving by Jay Shetty.