In April 2011, I had been a Lauren’s Hope customer for a while already, and I was excited to share my family’s story on the LH blog. Jenna White interviewed me about my little family, my son’s autism, and why I believe so strongly that children with autism need to wear medical ID jewelry at all times.
In April 2012, my relationship with Lauren’s Hope had grown, and in my first freelance piece writing for the company, I shared why Every Day is Autism Awareness Day when your child has autism.
In April 2013, and on many occasions since moving to Kansas City and becoming the Marketing Manager here at Lauren’s Hope, I’ve blogged and posted and tweeted and generally shouted from the rooftops about autism. To me, getting to help raise awareness of this complicated condition is a serious job perk. It’s something I enjoy helping others do when I interview people for the Lauren’s Hope blog and they tell me about the conditions impacting their lives so we can share those stories here (Tell us yours!) and help raise awareness of the many, many other reasons people wear Lauren’s Hope medical ID jewelry.
Today, as we head into Autism Awareness Month, my mind is not on raising awareness, though. It’s on my son. Because he is not autism. He is not a diagnosis. He is not a condition or a label or an awareness ribbon to stick on my SUV. He is a person. He is my son. And because everyone with autism is someone’s son, someone’s daughter, someone’s precious baby, I’m not going to throw out statistics and warning signs and PC awareness jargon. I’m not going to tell you how to spot autism. I’m not going to tell you what autism is.
I’m going to tell you what autism means.
Autism means that Will is nine years old and yet, my six-year-old daughter, Julia, keeps referring to him as her “little brother” lately, as his differences have become clearer to her, especially now that she is in school and sees that most kids are more like her than they are like him.
Autism means that Will cannot function without an iPod in his hand in 90% of situations. It also means he has no concept of money, a skewed concept of cause and effect, a heavy dose of Obsessive Compulsive Disorder (OCD), and all the frustration that goes along with being mostly non-verbal. So he bangs those iPods on hard surfaces daily, but that’s just what autism means for us.
Autism means that Will experiences and expresses emotion differently. So when my nine-year-old curled up in my lap in December, said, “Moe-mee,” and put his open mouth on my face, I cried joyous tears that he had said, “Mommy” and kissed me. And then sometimes I cry because it hasn’t happened since. But that moment is fixed in my mind, and I will live on it, cling to it, and dream about it in the hopes of it happening again.
Autism means that when my husband and I divorced, people overwhelmingly assumed it was because of Will’s autism when, in truth, his autism kept us together longer as we banded together to support our son. It means that when my son could not handle living apart from his father, I had to let him go live with Daddy, even though it means walking around every moment with a hole in my heart. It means that every day, I Skype or call my son who doesn’t speak and have a one-sided conversation just so he knows that I love him all the time, every moment.
Autism means that I will probably never retire, because while he’s living with his dad at the moment, odds are that Will is (hopefully) going to live with me again, next month, next year, or in a decade, and I will be caring for him his whole life. It means his dad and I have to plan for his long-term care instead of planning for college.
Autism means constant planning, explaining, educating, hoping, advocating, meeting, and working, all toward the goal of making the Will’s world safer and more secure, both in the present and throughout his life.
Autism means cheering when my third grader uses the potty, because even at 9, accidents still happen. It means getting hit and kicked and pinched sometimes when his frustration is just too great...and wondering how we'll deal with that when he's 15 or 20. It means flooded bathrooms due to his water fixation. It means replacing broken iPods and windows and TVs. It means never quite knowing what we are going to be able to do in a given hour or day …or life.
Autism means childcare costs twice as much and is seemingly one tenth as available. It means having to pack special foods even for a trip to Target. It means knowing he can never, ever tell us if someone hurts him...and letting him go to school and camp anyway.
Autism means belly laughs that resonate in my soul. It means smiles that light us both up inside with a warmth that carries me through the dark days. It means bedtime snuggles and lots of tickles. It means looking at everything and everyone in a more compassionate, more caring, more open-minded way.
This is what autism means for me. For us. But there’s a saying in the autism community that goes, “If you’ve met one person with autism, you’ve met ONE person with autism.” People with autism are all individuals, all different from one another, all unique and yet all somehow similar in how they are different from neurotypical people. But it's important to remember, they are, as Eustacia Cutler, mother of the esteemed Temple Grandin, has often said, "Different, not less."
So this is what autism means for my family. What does it mean for yours?
April is Autism Awareness Month, and Wednesday, April 2nd is World Autism Awareness Day. We’ll be joining the Light It Up Blue movement here at Lauren’s Hope by wearing blue in the office on Wednesday to support Will and all of the countless children and families impacted by autism every day. We will also be sharing more information on our social media channels all month long. How are you helping support families with autism this month?