Everything I've learned about autism & special needs I've learned from a book: that's why you need to listen to me

I don’t have an autistic child. I don’t have a child with special needs. I have a niece with autism and CHARGE, a nephew with autism, and several friends with kids on the autism spectrum.  I used to watch Parenthood; I’ve read The Curious Incident of the Dog in the Night-Time.

Unfortunately, none of that matters. There is no six degrees of parenting a child with special needs.

We all “know someone.” According to a 2015 National Health Interview Survey, 1 in 45 US children has been diagnosed with autism. According to the CDC, 1 in 6 US children has developmental disabilities.

cof4Approximately 15% of our US kids. Let that sink in for a minute.

I can empathize, sympathize, maybe even babysit for a few hours, but I will not understand.

I won’t know the stress of an IEP meeting, and I can’t comprehend the multitude of therapists involved in their child’s life.

But, I can make a small difference.

In the United States, 6.5 million children receive special education services. In the state of Illinois, kids can receive in-home Early Intervention therapies for developmental delays. After their third birthday, classes begin at the public school.

After that, there’s a whole bunch of technical/educational/medical jargon that you almost need a degree in each to understand. Life becomes filled with 504’s, IEP’s (individual education program), new diagnoses, and endless reevaluations and specialized services to best suit each child’s needs: speech therapy, occupational therapy, fine motor skills therapy, sensory integration.

These cycles continue until the child graduates high school.

Then what? Not much.

Parents are left to find services- that essentially don’t exist- to help their kids find communities of friendships, to maintain skills and develop new ones  to prepare them for life as an adult.

About five years ago, Ginny and Terry Klein wondered what lie ahead for their grandson and granddaughter- each with special needs. Their research for local vocational and life-skills programs led to a grim realization…there wasn’t much offered.

Instead of saying “Damn. That sucks.” These kick-ass grandparents Kevin Costner’d it and said “Hey! If WE build it, maybe they will come.”

cof1Thus, Connection of Friends was born.

It’s an opportunity for individuals ages 16 through adulthood to connect through workshops, science, yoga, music, cooking, and volunteering to build life-skills and friendships.

Autism…developmental delays…special needs…we all know someone.

I will never presume to understand what is like to parent a special needs child.

But I can help ensure programs like Connection of Friends are available for those who need it.

Of course, as a non-profit, they’re always happy for more donations and volunteers.

cof tapOr, you can join me (and them) on September 17th and Raise a Glass for COF: 5 craft beers, 5 courses, and the opportunity to purchase artwork, soaps, and dog treats all made by the Connection of Friends community. Though get there early if you want the dog treats, they’re seriously every dog’s favorite and the sell-out quickly! Ticket sales end Monday, September 12th.

Even if your child isn’t a teenager, Connection of Friends is a wealth of information. They know first hand the things I’m only reading about in books.

 

Photo credits: Connection of Friends and CoF facebook

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