Like many of you, I sit here tonight in disbelief that another summer has flown by. At the beginning of the summer, Joe said, “This is the summer you are going to look back on. This is the one that you’ll want to get back.”
I only half believed him.
Joe is an adventurer. He has the heart of Henry David Thoreau and the wanderlust of Jack Kerouac. He dreams of cross-country road trips in a RV and wistful hikes through uncharted terrain. I dream of a secluded beach and a margarita on the rocks. Salted. Heck, I’ll just take sitting in a beach chair for more than five minutes before having to chase a baby or dodge a seagull or dig a moat or referee the boys’ fights.
Our summer involved none of the above. We have four kids ages 7, 5 and 19 months. Our adventures involve ample time for naps, diaper changes, sensory breaks and temper tantrums!
Which isn’t to say we don’t know how to have fun. We had a bucket list and some lofty plans. “Make smoothies from fresh fruit.” “Go to Knoebel’s.” “Catch fireflies.” “Sleepover at Mom Mom’s.” “Go blueberry picking.” “Watch Mary Poppins.” “Go to Build a Bear.” “Go to Sesame Street.” “Ride bikes without training wheels.” “Play with the hose.” “Camp out in the living room with Christine.” “Go to New York with Mommy and get on the Today Show.”
My personal bucket list included: “Read books that aren’t about Autism.” “Go to the beach.” “Have an overnight date with Joe in Philadelphia.”
Ok, so they weren’t that lofty. Except for maybe the Today Show. But I’m sure you can guess which ones we checked off.
Luckily for us, the kids’ bucket list was pretty easy to attain. The kids are easy to please and can find fun in anything as long as we are together. We took some small road trips, but for the most part we stayed home. The babies, who I always say are “my easy ones,” have started to demand their fair share of the attention. At 19 months, they are really getting into everything! Henry started walking this month, which is an amazing accomplishment for him and should not go without noting that we are humbled and overjoyed by this milestone. But, with two walking toddlers, we are also now in full-fledged chaos mode. Between Henry’s and Finn’s therapies, we had five appointments to maintain every week. And then there was the whole part-time job I took as a lawyer…
I don’t have the energy to explain it in detail right now, but I am sure it will be a future blog post I have already envisioned, “PTSD and the IEP.” To say the least, I didn’t spend my summer reading Autism books, I spent my summer researching state and federal Special Education laws. I realized how much we didn’t know. I realized how much we needed to know in order to help Finn.
So, by day I was “playing in the hose, making fresh fruit smoothies and catching fireflies” and by night I was researching, collating and preparing. My constant inner-dialogue was silenced by IDEA law and its litigious jargon.
One weekend, we were driving from the shore to the Poconos and I brought “Finn’s file.” It’s a four-inch, three-ring binder containing his entire educational and medical file. I talked to Joe, researched and wrote the entire ride. At one point, Joe said, “Are you going to do this the whole weekend?” I didn’t mean to. I couldn’t help it. I was completely and utterly consumed. I had to be. I needed to know that if Finn didn’t get something he needed it wasn’t going to be my fault!
That same weekend, as I stood at Knoebel’s and watched the kids enjoy time on the rides with their cousins, my inner-dialogue said, “I am always berating myself for not ‘living in the moment.’ The stress that consumes me because of Finn’s situation is a constant struggle to overcome. But, after the summer’s over and I look back, I know I’ll remember the good parts and forget about the bad.”
That’s the good thing about being an optimist (or having a really bad memory), the negative will never overshadow the positive. As long as we were all together, it will be a happy memory.
In the end, my research was worth it. I would never say that we “won” because any time you have to fight like we did, no one really wins. We broke an already fractured relationship, but we helped our boy get the help he needs. I will pick up the pieces and repair the relationship, but my priority will always be with Finn. He is worth it. I hope he never knows the lengths we went to (and will continue to go to) to be a voice for him.
But for now, I’m happy to sit on the other side of a happy (albeit sometimes arduous) summer and feel satisfied. In addition to our bucket list: Henry took his first steps, Finn lost his first (and second) tooth, Charlie got his training wheels off, Tallulah mastered the art of the “diva face,” Daddy and the boys went camping, Henry and Tallulah rode their first rides, Charlie had his first lemonade stand and Mommy got a night out with the girls! We have squeezed every last drop from summer and it is with full hearts and a full bucket list that we now move on to the school year. Kindergarten and Second Grade, here we come!
If only I can get myself on the Today Show tomorrow morning…