It Takes a Village (and then some) to Raise a Child with Special and Complex Needs

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Campbell enjoying a puppet show by a youth group during the building of a handicap ramp for our home by Red House Baptist Church
There’s an African proverb you may have heard, “it takes a village to raise a child.” Hillary Clinton wrote a book in the late 90s using that concept and in recent years, Pope Francis had Italian school children chanting the mantra.
I’m sure most of you can probably agree this is true with any child. Parents with children who have special needs live this reality daily and may even add to the list of villagers.
It takes a village, several specialists, therapists, maybe the next village over and having the National Guard on standby isn’t a bad idea to be honest.

The amount of people who are within Campbell’s support system is numerous. And we add to that list often.
Besides friends and family, she has therapists, teachers, doctors, nurses, equipment supply vendors, specialists, orthotists (makes her braces), not to mention her priest, hairdresser and multiple acquaintances that have become a part of her larger support circle.
Some of these people have been with us since her birth while others have only been around for a short while. Each person plays a role in her care and makes an impact.
Most days, one or more of these people or “villagers” come into our home. We have welcomed them not only into our home but our hearts.
We have learned to trust these select people to guide and support us as we travel along this sometimes-bumpy road.
For example, I recently had surgery that required no lifting for four weeks (that’s an entirely separate story). You can imagine the difficulty that posed for the primary caregiver to a child who has to be lifted multiple times daily and weighs about 50 pounds.
Her physical and occupational therapists trained my son, Matthew, how to lift and transfer her to the bed, wheelchair and car seat. They also instructed him on how to break down her wheelchair to load in the van and then reassemble it.
We also proved that sixteen-year-old boys listen a lot more to people who aren’t their parents.
Another example was her hairdresser gifting her haircut and demonstrating patience as she cuts her hair while her head is moving. It might take a few of us to hold her head but we get it accomplished.
Together we make things work and prove there is strength in numbers.
And that is what it means to be a part of a village of people, uniting to care for and support a little girl who gets through every day to the best of her ability, often with a smile.
Or maybe a smirk is a better description. She is a tween girl and that’s pretty typical.
Being a mother, father, brother and grandparent of a child with special needs can also be taxing at times. Not only the physical care that goes into taking care of Campbell, but emotionally watching her go through so many trials.
Our village not only supports Campbell, but they support our entire family.
People often ask, “What can I do to help?”
“We are fine, thank you” is a frequent reply although it’s many times far from the truth. Sometimes when the needs are so great, it’s hard to even know where to begin to ask for help.
We are lucky to have many people in our support system who help without asking. Bringing a meal by after a surgery or a care package during a long hospital stay, each act of kindness is appreciated.
And the greatest lesson that I’ve learned (and am still learning to accept) is that it is okay to ask for and receive help. Sometimes allowing someone to help is the greatest gift you can give. It shows that you trust them and welcome their graciousness.
That you appreciate them. And who doesn’t like to know that they have made a difference? It’s one of the best feelings in my opinion.
So the next time someone asks, “What can I do to help?” Eat a slice of humble pie and smile before answering them with something you really need. Or something you just really want.
Now that I think of it, a pedicure sounds wonderful and a cappuccino would be really nice while you’re at it.

 

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About the author

Michelle

Michelle is a writer based in Richmond, KY who is trying to navigate special needs parenthood and life in an imperfect world, all while keeping her sanity. She is on the board of the Bohring-Opitz Syndrome Foundation and is a contributor to The Mighty and The Today Show Parenting Team. She'd love to hear from you! Send her an email at michelle@chasingthecleavers.com.

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