Autism has been a part of my life since my son, Ben, was diagnosed when he was 2 1/2. I believe autism is just a part of who Ben is. And while I would do anything in my power to help him manage his autism, I don’t think I would change it – I really don’t. It's my goal to give him the tools to do whatever he wants to do in life. It's my goal to make things less hard for him. And it's most certainly my goal for him to experience life, relationships, joy and love as fully as his neuro-typical counterparts. But do I want him to stop making endless playlists? No. Do I want him to stop alphabetizing my CDs? Good lord, no. Do I wish he didn't remember every joke he’s ever heard and bust them out with less-than-stellar comedic timing at the oddest moments? Not really. Do I wish he wouldn’t memorize the order of every song on every Now! CD ever made, quote completely out of context from a movie and try to pass it off as conversation or tirelessly arrange and rearrange Lego Guys in his bedroom? No – I really don’t. It's all part of the package that is Ben Heagler - part of his truly wonderful "Ben-ness."
And while I wouldn't want to change my Ben, I do dream of a more tolerant world for him. During Autism Awareness month, and always, I dream of a world where kids like Ben - and kids with differences of all types - are embraced and bullying them is unthinkable. A world where the strengths of the quirky kid are celebrated like those of the star athlete. When I sometimes post "I believe intolerance is intolerable" as a Facebook status, I am speaking globally about race relations, religious freedoms and genocide, but I am also speaking very personally about my own quirky kid and thousands of others like him. Kids who "flap" when they're excited or "scootch" on the floor like an inchworm to calm themselves, or who sit at a computer for hours on end typing a 610-song playlist entitled ZZ Top (which inexplicably contains not even one ZZ Top song).
When Ben, Lucy and I gave away blue lightbulbs to our friends last week, Ben thanked them for participating in Light It Up Blue for Autism Awareness. And I know he’d want me to express our thanks here as well. The Heaglers thank those of you who shined a light on autism by putting a blue bulb in your outdoor fixture this weekend. We thank those of you who donate to autism causes and who read this blog to learn more about life in a family living with autism.
And I, personally, thank those who offer an understanding heart, kind word or encouraging smile. Thank you for sharing a cup of coffee, glass of wine (or the occasional shot of tequila) with me. For laughing and crying with me. And for offering a hug… to me and thousands of other parents just like me. All of us doing our best every day to give our kids the tools they need to live the lives they want while preserving that which makes them "them." Doing our best to raise our kids with grace, dignity and the respect they deserve.
Thank you, Lori, for allowing us into your world and educating us on a world we would otherwise, be clueless.
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Lori, you have given me so much more than you will ever know. I have several close friends who have children like Ben. However, you have given me this look inside Ben's world which has made me a better person. YOU are such an incredible mom and Ben is simply FABULOUS!!
ReplyDeleteWhat a blessing your eloquent words are to people like me who never really knew what it was like to raise an autistic child. And how lucky am I that have had the chance to meet Ben and find out for myself what an incredible kid he is.
ReplyDeleteBRAVO! Thank you, Lori.
ReplyDeleteA wonderful read Lori.
ReplyDeleteAgain, I wish I had your gift for words. God has gifted you with amazing abilities to empower Ben to reach out to the world and make it a better place for all of us.
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