Jamie has autism.
I’m not sure I’ve ever come out and just said those three words, only those three words. If I do feel the need to mention it, mention his diagnosis, it’s always followed up by a long-winded explanation. Usually because it’s met with a look of shock or surprise; a silent dare for me to prove it. I’ll explain how he’s really smart but not socially at all and, yeah, he plays with others. And how, no, he doesn’t stim like some kids who flap their hands or snap, but he stims in other ways. How no, in these 10 minutes you’ve observed him he hasn’t melted down but I know a meltdown is only minutes or if I’m lucky, hours away.
My family lives autism. We live with screaming and crying and refusing to eat anything that isn’t the exact-right temperature or texture. Mornings are hell and so are mealtimes. Communication is a nightmare and some behaviors are disturbing and weird and just not right for a nine year old.
My friend Suzanne and her family live autism, too. The more I got to know Suzanne, the more obvious it was that we were meant to do something, together, to help families who “live” autism. After months and months of talking and planning and THOUSANDS of texts (because we don’t speak on the phone, that’d be too easy) we are ready to launch our non-profit organization:
We’ve submitted paperwork and gotten approved. We have formed a board of directors and are well-versed in the ins and outs of articles of incorporation and by-laws. We are ready to make a difference and make life easier and more manageable for so many families.
It’s estimated that roughly 1 in 80 children have autism (the number is higher for boys, and this estimate is just that…an estimate). Think of all the children you know. The odds are pretty good that one of those children has autism. If you know me and my family, boom. Jamie is it. What you might not know is that having a child with autism is lonely. It is frustrating and sad and can make you so angry that you cry. And when you try and explain it to your friends, explain why life is so hard every single day and that it can feel like it’s getting better with a great day only to be shot down by a really hard day in the blink of an eye, they just don’t get it. And families who don’t live autism also don’t understand that you wouldn’t change who your child is for the world. Without autism, Jamie might not have the curiosity he has for so many things. He might not have that passion for reading, his hysterical (yet dry) sense of humor and his soft and gentle way with his sisters. He might be too cool to hug me goodbye as he walks into 4th grade and it’s likely he wouldn’t wave until I drove off, yelling, “I love you , mom!!!” He wouldn’t wear his heart (and opinions) on his sleeve. I love his quirks and I love his personality. And while it might be difficult sometimes, I honestly wouldn’t change him. But having support and knowing others who live this life, too, would be really nice.
And now, it’s here.
Suzanne and I couldn’t be more excited. We are starting out very small: monthly support groups for families, an ever-growing resource library for people seeking more insight and information and guest speakers for small groups.
Our dream is to one day be able to actually provide services for children with autism in addition to all of the above. We want to someday run a center in which children with autism can play and work and receive whatever care they need in whatever capacity that might be. I have no doubt that will one day be a reality.
If you are a parent, sibling, spouse, grandparent, cousin, aunt, uncle or friend of someone with autism and want to utilize The Green Apple Project’s resources and services, please send us a note.