We’ve all heard the saying, “Thank goodness they have ten fingers, ten toes,” and when people ask, “Do you want a boy or a girl,” many now respond, “I just want them to be healthy.”
I know for me personally, I never imagined what life would be like if I had a child with a disability. When I look back at myself 14 years ago, I think about how young and unaware I was. If you had told twenty-something me that I would have to be my son’s everything for the rest of his life, I would have taken it as, “well, duhh, parenting is a lifetime job.” Naively, I would have thought that they just meant he’d be a “mama’s boy”.
Sadly, I now know exactly what that means. “You will have to be your son’s everything for the rest of HIS life.” That means I am not only his mother, but I am his caregiver, best friend, and advocate for as long as he is here with us.
Focus on Today : Overcoming Caregiving Challenges
From one parent to another, here’s what I’ve learned. The challenges are significant, but there are ways to overcome them.
Accept help when it’s offered
Take advantage of every helping hand.
Take advantage of resources available
From financial resources to local community support groups, medical assistance, and more, resources exist and should not be overlooked.
Build a support network
Lean on family and friends who can assist when needed, or who simply can be a sympathetic ear to listen to your struggles.
Keep organized systems
Managing various doctor appointments, school activities, and household tasks can be overwhelming. Find an organization system that works for you and your family so that nothing falls through the cracks.
Prioritize self-care without any guilt
Parents have to take care of themselves in order to take care of their children. Make time to decompress, to exercise, to go outside, to see friends. In doing so, you’re able to reset so that you can better care for your family.
Celebrate the small wins
Don’t overlook these good moments, even if small. They build on one another, motivate, and foster gratitude.
Step into advocacy
Empower people who don’t have a voice and make a difference in your community. In doing so, you reach other like-minded people and those with similar stories to your own, who work together to make meaningful change.
My son Carter was diagnosed with Sanfilippo syndrome at the age of four. This disease is often called childhood Alzheimer's, because it slowly takes away the skills children once had. "Slowly" is the most commonly used word, but as a parent, I struggle with that description. There was nothing slow about watching my son lose his abilities. One day, we were having conversations, and before we knew it, we were relying on body language, facial expressions, and a handful of words to understand what he needed. As the disease progresses, it will continue to take every skill and ability he has: walking, eating by mouth, and even swallowing simple things such as water.
He is now 14 years old and relies on me for everything including: feeding him, helping him with his hygiene, toileting, safety, and being his voice, as he is now non-verbal. He needs me to be able to check his body language to know when he is not feeling well or if something is off. Families like mine have had to face the reality that sometimes our children aren't healthy.
I think so many parents say, "I just want them to be healthy" because they understand how much harder life becomes when health is no longer something you can take for granted. Families like ours share our stories to help people empathize with what it is like to raise a child with special needs.
Families who have children with disabilities experience numerous challenges. Managing medical and therapy appointments can take a toll on parents who are also trying to navigate their other children’s activities, work schedules, and more. Balancing the collective family’s needs alongside the special health needs, presents constant hurdles parents have to navigate.
The financial stress is ongoing. The emotional and mental exhaustion follows. Families like ours are consistently working to provide the best care for their child, while keeping the household afloat. Social isolation often ensues, and many families are left feeling alone, unsupported, and unable to stay afloat emotionally.
My advice to families of children with disabilities is that the priority should always be to focus on today. Challenges will remain, and we may not know what the future holds, but we can focus on what we have today.
ABOUT THE AUTHOR:
Jennifer Sarker, a wife and mother of two, is a dedicated full-time caregiver for her fourteen-year-old son, Carter. Carter lives with Sanfilippo Syndrome, a debilitating
condition frequently described as “childhood Alzheimer’s.” She is also a spokesperson for Aeroflow Urology.
Read the article here.