Autism Awareness Month

Even though April is in its waning days, and a million things have prevented me from writing this post, I need to share my thoughts on Autism Awareness Month.

This precious boy is my nephew, Ethan Lee. He's been my Buddy from nearly the moment of his birth. I remember holding him for the first time (all 11 pounds of him!) and feeling a mutual comfort pass between us; he was content to be held in my arms and I was only too happy to finally have a baby in the family to play with! As the first grandchild in my family, this boy achieved a special status just by being born. Then during his first night of life, when he was diagnosed with double pneumonia and whisked away to NICU, he became that much more special to us. As he recovered, we realized what a fighter we had on our hands! Then during his second year of life, when his mama and daddy began to realize Ethan had communication issues and we finally got the diagnosis of autism spectrum disorder, he achieved a whole new echelon of special in our hearts, because we knew that our Ethan was in for the fight of his life.

Getting a special hug on my wedding day

I can't even put into words how much I love this boy. My sister Katie (his "Aunt Modey") and I often comment to each other how privileged we feel to be included in this little man's inner circle of trust and love. You see, kids with autism sometimes have challenges expressing and accepting affection. Not our Ethan! Yes, he is very wary of strangers (which is always a good thing), and it takes quite a while for "outsiders" to earn their place in his world. My Marty has made careful attempts to reach out to Ethan, not wanting to overstep his boundaries and wanting Ethan to feel comfortable accepting him as an uncle when he felt like it, and not before. Just a couple months ago, Marty finally "got the nod," so to speak. He was standing in my sister's kitchen, getting a refill of ice water from the fridge, when he felt a little hand on his waist. He looked down to see Ethan just touching him for a brief moment, and Marty says he knew he was "in." What a great moment! As for me, I've always been the recipient of special hugs and kisses. Sometimes, Ethan will be watching one of his beloved Thomas videos (there's nothing this kid likes more than Thomas!) and he'll pat the sofa cushion next to him and beckon to me. I'll sit down next to him and my Buddy snuggles right up into my body and puts his hand rather possessively on my leg. This never fails to make me smile, and more often than not, I'll even shed a couple of tears. I've even been known to lift my 60+-pound nephew in my arms and carry him around (not while I've been pregnant, I promise!) because I still feel that feeling of mutual comfort pass between us.

As for Ethan's fight with autism? Still ongoing, of course, but he keeps making new strides. Even though he struggles, it's such a huge joy to see him jump new hurdles. I remember when he wrote his name for the first time, how we cried and cried. And even though they're somewhat limited, we have actual conversations now. A million praises go to my hard-working sister, who pursues every therapy and every curriculum and every learning tool she can get her hands on. Sarah is such an inspiration to me, and I've learned so much about the passionate love of a mother from her experiences fighting for the best of everything for Ethan. Right now, she and my brother-in-law are working to save money for a special dog who's trained to help kids with autism. There will be a couple types of fundraisers later this summer toward this effort, and I'll be sure to post about those here.

So why "autism awareness"? Before Ethan Lee came along, I had no idea of the struggles that autistic kids face. I had no idea how the parents of these kids have to challenge school boards for proper education, how they have to transport these kids from therapy session to doctor's appointment to kindergarten to home, sometimes in a single day (and how some of these parents have 3 other kids!). I never knew the emotional rollercoaster you take when you love a kid with autism. How you would do anything to fix it, but how there's very little you can do but love and cuddle and play with and comfort. And pray...and help in any way you can. If you know a family with an autistic kid, just know that the parents and grandparents and yes, even the aunts and uncles, face all kinds of challenges in nurturing and raising their very special gift. If nothing else, be aware enough to say a prayer for these families, but mostly for the kids who have to fight their disorder every day.

I'm sending you lots of special hugs today, my sweet Buddy! Auntie B loves you!!!