What I’ve Learned From the ‘Village’ That Supports My Special Needs Family

There’s an African proverb you may have heard: “It takes a village to raise a child.” Hillary Clinton wrote a book in the 1990’s using that concept, and in 2014, Pope Francis had Italian students and teachers chanting the mantra.

I’m sure many of you can probably agree this is true with any child. Many parents with children who have special needs may live this reality. It can take a village, several specialists, therapists and maybe sometimes the next village over.

The amount of people who are within my daughter 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 (who make her braces), not to mention her priest, hairdresser and multiple acquaintances who 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” comes into our home. We have welcomed them not only into our home, but into 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. You might be able to imagine the difficulty that posed for the primary caregiver to a child who is typically lifted multiple times daily and weighs about 50 pounds.

Her physical and occupational therapists trained my son, Matthew, 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 it in the van and then reassemble it.

We also proved that some 16-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 to me 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 after all.

Being a mother, father, brother or grandparent of a child with special needs can also have its challenges 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?”

women performing puppet show for girl in wheelchair
Michelle’s daughter, Campbell, and her friends.

“We are fine, thank you,” is a frequent reply, although it can be far from the truth. Sometimes when the needs are so great, it can be 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. Whether it’s 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 I’ve learned (and am still learning to accept) is that it is OK to ask for and receive help. Sometimes allowing someone to help can be the greatest gift you can give. It can show 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?” consider eating a slice of humble pie and smiling 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.

Follow this journey on Chasing the Cleavers.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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