We Are All IN This Together
Written by Maria S. Crawford
We have all heard the saying, "it takes a village to raise a child.” Well, that saying could not be more relevant or important to a family with a child who has special needs. Especially as that child turns into an “adult.”
Most special needs parents feel very isolated, even when surrounded by friends. The depths of isolation can be paralyzing at times. It is like being on an island watching the boats go by, filled with people laughing, playing, and having fun. You want to get on the boat, you really do. But you are stuck on the island. And even if you could swim to the boat, you are just too exhausted to even try.
But, regardless of how isolated or how tired you feel, if you are a special needs parent I am here to encourage you to get off your island and start swimming to that boat. And if you are not a special needs parent but know someone who is, then I encourage you to throw them a life vest when you see them swimming.
You see, true inclusion is not just for the kids we are raising, and it is not just for the classroom. The truth is parents and siblings need to feel included and accepted too.
My “mom” friend group has dwindled significantly over the years. As my son, Zane, who has autism, got older his friend groups got smaller. Sadly, so did mine.
It was a harsh realization and at times was even more isolating than in the early days of his diagnosis. It is truly jarring to look around and realize just how small your village has become.
However, that does not mean you have to stay isolated.
Create your own community of strong, capable people—much like those of us who belong to WABT, but do not limit it to just special needs parents. Educate strangers and friends. Accept help when offered. Build the village that both you and your child need.
Awareness is more than wearing blue puzzle piece. Acceptance is more than changing your FB profile page to support a disability. When we say “it takes more than a village” we mean it takes EVERYONE to be educated and compassionate.
Having “more than a village” means that others not only accept, but embrace, a special needs family—and all that comes with it. It is about making a sincere effort to build an authentic relationship that will stand the test of time.
Having Zane go from the “cute little boy with autism” to a “teenager with autism” has been very eye opening to me as a parent. I worry about how the world will perceive him—not only whether they will accept him, but whether they will truly embrace him as he becomes an “odd” adult male.
The other day on the NextDoor App a young lady posted about an adult man on a bike who had approached her to become “friends,” and it made her feel extremely uncomfortable. I knew who she was referring to and this particular young man is on the spectrum and well known in the community. However, the woman did not know him and felt very uneasy. The judgmental comments that I read coming from grown adults expressing their “advice” and “opinions” regarding someone they did not even know were absolutely appalling.
If you ever wonder why kids still bully other kids, you do not have to look very far.
It made me think about how much Zane loves jogging and riding his bike around the neighborhood. How he also loves to stop and talk to people (including women) to make “friends.” As he gets older, will this community protect him while he is out trying to live his best life and make new friends?
Will strangers see him and assume he is dangerous?
Will people feel uneasy around him?
Or will people take the time to learn about his disabilities?
We need to have more than a village come together and help us continue “raising him” and other special needs children as they become adult members of our community.
These are important issues to address, even if it makes us uncomfortable... as uncomfortable as the young lady on NextDoor was when she encountered a harmless young man on the spectrum who simply wanted to be friends.
Zane is a senior in high school. He is well liked, enjoys school and is never really harassed or teased because he knows everyone so well and everyone knows him.
School is Zane’s village right now. But when he graduates, that village will be gone.
After graduation, many of our kids do not go to college. I can only hope that our community as a whole will embrace all our kids as adults and accept them as they are, because they will be an integral part of this community for a very long time.
So, yes, it takes a village to raise a child.
But it takes a whole lot more to raise a child with special needs.
I am so grateful for the special village we have found through We Are Brave Together. And I remain hopeful that more parents of typical kids will join us along the way, or at the very least, throw us a life jacket when they see us swimming towards the boat.
Because after all, we really are all IN this together!
Maria is a choreographer, wife to husband Fred, and mom to two amazing boys; Daniels, 25, who lives in Kauai, and Zane, 18, who is a high school senior. Zane was diagnosed with autism at 17 months old and has been successfully mainstreamed in general education since kindergarten. Maria is also an active volunteer for PTA, an advocate for special needs students and parents and very involved in creating peer-mentoring situations for students at all levels. Last year Maria took part in organizing an adaptive sports program in TUSD and was successful in creating and leading an adaptive cheer squad to participate.
