April is here again. For autism families, it means a month of blue lights to raise autism awareness and to celebrate neurological diversity. And to many of us, it feels like a slap in the face – the rate of autism continues to skyrocket while families are left struggling. With over 1% of children affected, you have to be living under a rock to not be “aware” of autism. A blue light seems like a hollow gesture and a glowing reminder that the other 11 months of the year our kids are left behind.
I’m not trying to be negative. In fact, I work very hard to be positive just to get through each day. I am blessed to have an amazing support system and I am touched by the kindness of both friends and strangers. But, while everyone is aware that autism exists and affects 1 in 68 children, you might not be aware that:
- Autism for most families is not the autism you see on TV. It is not a kid who is a little quirky who is a computer whiz or some other savant. It is not that socially awkward teenage who probably won’t get asked to the prom but blossoms in college. It is certainly not Jerry Seinfeld or some other successful celebrity who announces their self-diagnosis. It is often a nonverbal child who spins in the corner flapping her hands. A teenage in diapers who suffers multiple seizures every day. A boy who is up all night screaming and bashing his head into the wall. A family who can never leave the house together as a family because they fear wandering, tantrums, or worse. Parents who haven’t had a good night’s sleep in years. Autism can be debilitating.
- Autism is not just a different way of thinking that has always been with us, and it is not something to celebrate. There are people who will say that this means I don’t love, accept, or celebrate my child. Nothing could be further from the truth. The families I know love their children dearly and celebrate every little accomplishment; they just have no desire to celebrate the suffering of our kids. Saying that children with autism are just wired differently minimizes their daily struggles and comorbid medical conditions. These kids have real medical needs that deserve to be taken seriously.
- There IS hope for those affected by autism. You’ve probably also heard that autism is a lifelong condition with no chance of recovery. While most people on the spectrum will always be affected, many many children can improve dramatically with the right support and interventions. Some children even lose their diagnosis and recover from autism completely.
The Real Autism
In honor of Autism Awareness Month, I want to make everyone aware of the real autism. I’ll be sharing personal stories about my family’s autism journey. And because our journey alone is not enough to effectively convey the autism experience (as the saying goes, if you’ve met one child with autism, you’ve met … one child with autism), I’m thrilled to let you know that I’ll be featuring a number of guest bloggers – real autism experts. Who better to tell autism’s story than parents in the trenches living it every day? I can’t wait for you to meet these amazing families and I am so grateful to them for allowing me to share their stories.
TACA Friends & Family
I’ll also be sharing our annual video for TACA’s Friends & Family campaign (tomorrow on April 2nd – World Autism Awareness Day). Talk About Curing Autism (TACA) is a national nonprofit organization dedicated to helping families with autism, and I am a volunteer and parent mentor for the Pennsylvania Chapter. It’s no secret that I HATE asking for money. I am not a good fundraiser in any way. But, TACA has helped so many families including my own that it is a pleasure to share their message of hope.
A Fun Giveaway!
A few years ago, I wrote You Are My Star, a children’s book to support TACA (all proceeds go directly to TACA) in honor of Christopher that is illustrated by kids on the autism spectrum. You can see the entire book and read more about it here. At the end of April, I’ll be giving away a hard cover copy to one lucky person. All you have to do is comment on any blog post this month with a message of support for families affected by autism. A winner will be chosen at random via random.org and announced on my Facebook Page the first week of May.
I hope that you check in this month to read more. If you really want to show your support for those affected by autism, show kindness. Refrain from judgement of that struggling mom or seemingly bratty kid. Be more than tolerant – be accepting, welcoming, and compassionate. Offer to help a family in need (even if it something simple – the simplest tasks are often difficult if you have to do them while keeping a 100lb child in check with one hand). Share our video and TACA’s message of hope. Give financially if you are able (to TACA or to another organization that will really make a difference). And put a blue light in your window if you want – just realize that’s not what families will remember.
My autism journey has changed the way I live and care for my family. I am passionate about nontoxic products, natural remedies, grain-free nutrition, essential oils, and healing the symptoms known as autism. This is a space for anyone aspiring toward cleaner, healthier living.
XO Joanna
