Estimated read time: 5-6 minutes
This archived news story is available only for your personal, non-commercial use. Information in the story may be outdated or superseded by additional information. Reading or replaying the story in its archived form does not constitute a republication of the story.
SALT LAKE CITY — People keep asking me versions of this question: "How can I help my neighbor who has a child with special needs?"
They ask me this because I have a couple of boys on the autism spectrum. I suspect they ask because they know my life is kind of a hot mess.
It's a lovely question, because it shows that people are aware of those around them facing challenges raising children with special needs. To those who have asked, I say thank you! You rock, people.
In my experience, there are a few welcome gestures that come from understanding what life with special needs children is all about.
It's exhausting
Parents of special needs children are universally tired.
Some, like my friends April and Katie, are frequently up at night with a child having seizures. One of my sons is a strange sleeper, waking and wandering the house in the wee hours. All of us find ourselves staying up too late to accomplish the myriad tasks that we can't do when our kids are awake.
Special needs parenting is tiring. It just is. The cumulative effect of handling medications, difficult behaviors and esoteric routines for years and years without respite can turn us into zombies.
Exhaustion with a side of stress breeds discouragement. There is a tangible sense of hopelessness when daily living is so strenuous and there is no end in sight.
Exhaustion with a side of stress breeds discouragement. There is a tangible sense of hopelessness when daily living is so strenuous and there is no end in sight.
It's in these moments that we most need someone to reach into the crevasse that threatens to swallow us, and snatch us back.
My neighbors Fred and Shirley are really good at this. They seem to have a knack for bumping into me or calling me up just as I'm on the brink of a nuclear meltdown.
They periodically call to check in with our family, just to see what's up. One evening in October, when I was recovering from a long and heinous virus, I noticed people bumping around on my porch. Fred and Shirley were arranging pumpkins, artfully decorated with black duct tape, on our steps. When I opened the door, they handed me a homemade chicken pot pie.
Simple acts of friendship subdue hopelessness.
It's isolating
The lives of special needs families follow a different trajectory than other families.
Syndi Knowlton, a Utah County mom of special needs kids, knows this firsthand. She started the Utah Kids Foundation with the mission of emotionally supporting parents of special needs kids.
Related:
Sometimes we 'amazing' parents of special-needs kids are just muddling through
Is there a word out there that always makes you cringe? For some parents of kids with special needs, that word is "amazing." Being called an "amazing" parent is a generous compliment, but it can chafe because such parents rarely feel amazing."I think that one of the greatest challenges of raising a special needs child is the isolation," she said. "For most of us, this will be a life-long journey. Our dreams of what we hoped to do in life have now been tempered by our new reality."
Syndi recently added the 700th parent to the Utah Kids online support group, a virtual gathering place where parents interact and know they aren't alone. Her mission is to help special needs parents "find their place of peace and acceptance so that their lives will bloom" in their new roles.
An understanding support system is priceless. The good news is that support can be manifested in small ways.
I learned this from my neighbor Karleen.
Karleen has a perfect garden, replete with topiaries, raked decorative rocks and burgeoning color bowls. Last summer she asked me if I would let her weed my flower beds.
"It's not that I think they need it. You always keep your yard looking nice," she said. "I just know you've got your hands full, and this is something I can do to help. It'll be a snap."
She was right. She was like Mary Poppins: In a snap she tidied up our landscaping and made the job a game.
It's full of misunderstandings
The most important thing you can give a parent of a child with special needs is your understanding.
Understand that we can't do everything that other families can. Know that we are limited in how we can participate or volunteer.
It doesn't take superhuman gestures to make a meaningful difference to a family with special needs. ...It doesn't require any particular experience or knowledge of disabilities. It doesn't take more than simple gestures.
Understand that if we say "no" to something, it isn't because we don't want to help. It's because we are struggling to keep our heads above water.
Understand that we are trying our hardest, and sometimes it just isn't enough.
A few years back I had a scheduling problem that was causing a huge amount of stress in my life. I had to pick up my son from his private autism preschool 40 minutes away. At the same time, I needed to retrieve my kindergartener from his class back in our neighborhood.
Four of my neighbors learned of my logistical dilemma and volunteered to take turns picking up my eldest son from kindergarten. They fed him lunch and watched him until I returned.
My friends did this every day for an entire school year, insisting that it was no trouble at all. In fact, they claimed their children looked forward to their designated day because it guaranteed them a play date.
They thought it was no big deal; but to me, it was.
It doesn't take superhuman gestures to make a meaningful difference to a family with special needs. It doesn't have to take large amounts of time. It doesn't require any particular experience or knowledge of disabilities. It doesn't take more than simple gestures.
Megan Goates is a Westminster College and USU alumnus, a mother, and a blogger at tooursurvival.com.
