Last week, I had an opportunity to share my journey as a special needs caretaker to the United Way Caregivers Coalition Of Morris County. Boy, was I nervous! I consider myself to be more of a writer than a presenter, but was proud of myself for actually trying, as I hadn’t done any public speaking since college. Even better that I actually made some sense! Here is the transcript from that day…
My name is Brenda McDonnell and I am the primary caretaker of my son, Brian, who was born with Down syndrome, then diagnosed with autism at 30 months old. Brian is now 14.5 years old, and the light of my life! Brian will always require caretaking and his needs are many and varied. I have been a caretaker for both of my parents as it pertained to their physical and emotional health, but nothing compares to the daily caretaking of a child with special needs. It is a lifetime assignment that requires great physical, emotional, and spiritual strength.
Nothing ever quite prepares you to be a parent either, as I quickly learned when Brian was born, despite the many books I voraciously read ahead of time. I was on bedrest in the hospital for a month prior to Brian’s birth and had lots of time to read and contemplate what motherhood would be like. The perception and actual reality of this experience couldn’t have been more different. Brian’s arrival into the world was a mixture of great joy, sadness, and fear, of both the unknown and what my husband and I knew would be challenging.
Brian was born with a large hole in his heart that required open heart surgery at 3 months old. And so our eventful journey began with a plethora of appointments, sleep deprivation, and learning step-by-step how to take care of this precious baby. More medical issues were to follow, then learning the ropes of Early Intervention Therapies, Special Education, social activities for special needs, etc. So much to learn and navigate through-and it continues to be an experience like no other!
Brian is my best teacher and has demonstrated through his incredible resilience and sweet nature how to be courageous and strong many times over these past 14+ years, especially when I have been often afraid and heartbroken. If you had asked me when Brian was first born what I had envisioned parenting a child with special needs was going to be like, I would have never imagined it was going to be this hard. I didn’t realize that the smallest of achievements would always be so monumental in our world. And who would have ever guessed that my son would still need assistance in the bathroom at 14 years old? I never thought in my wildest dreams that Brian would be non-verbal either- how is this even possible when he comes from a long line of gregarious talkers? And on and on the list goes..
I also never imagined that I could or would be the advocate that I am today for my son. By the grace of God, the support of other local special needs families, and through the encouragement of my husband, family, and Brian himself, I am able to forge ahead. Brian has a rich, full life with educational and social opportunities. I go to sleep most nights at peace, knowing that everything is being done to help Brian live his best life, at least for the present time. The future is what is really scary. We specifically moved to a particular area to provide those opportunities for Brian. It has and always will take a lot of people and resources to help us, help Brian.
Of course there is a high price to be paid for caretaking and advocating over a long period of time. Physical and emotional depletion are inevitable, especially after many years. There are many days when I still feel very overwhelmed by Brian’s needs and am afraid of the future, especially when my husband and I are no longer here. The challenges threaten to overtake the day, yet they can not ultimately be victorious. I may lose the battle ( which has happened numerous times), but I can not lose the war- Brian is counting on me. Daily self-care is a must- did you know that my caregiving needs come in a convenient” 6-pack” ?! Here they are:😊👍🏻
Brenda’s Caregiving Needs
1. Respite- a break in any form/ for any length of time counts and is necessary for recharging physically/mentally
2. Sleep- a very basic need, but often underrated for its amazing effect on energy and perspective
3. Reading-A good book is my mental escape, especially when the going gets tough- I try to read something not Special- Ed related every day for 30 minutes- it really helps me to stay in the present moment!
4. Exercise- Planet Fitness is less than 2 miles from my home- exercising even 30 minutes, 2x per week, changes my mental outlook
5. Gal Pals- Loyal girlfriends are the best elixir for the heart and soul. They are your anchor in a storm, always have your back, and protect your tender heart. I am blessed to have such friends.
6. Cocktail- Never underestimate the power of a glass of wine at the end of a tough day in the special need trenches!
Once I take care of myself, I am able to share some valuable lessons I have learned along the way. Brian has taught me so many! Here are a few:
Lessons Learned As A Special Needs Mom
1. You can’t be a perfectionist and a Special needs parent simultaneously. Our kids do things in their own way and and in their own time. Expectations must always be very flexible with our kids and ourselves.
2. I may often feel isolated , but I am never alone. God is with me and so are many other special families, who understand these feelings, even though the struggles are often very different.
3. Laughter continues to be the best medicine.
4. I must have time alone- sometimes it’s in the bathroom with the door locked!
5. While Brian’s needs are complex and life-long, he was created, like all of us, with a great purpose by God. Brian has impacted the world in a wonderful way just by being himself and is accepted by most people he encounters for who he is.
6. Crying is good therapy, whether alone or with a trusted friend. Life can be really hard with our kids sometimes and we need a “release valve” in order to move forward. I know I certainly do!