Guest Post: It's About Learning To Dance In The Rain!

Please welcome my friend, Jennifer Butler Modaff, whom I convinced to be our Guest Blogger on Nathan's Voice!  We encourage you to check out her blog and follow Caden's Tale. Please leave a comment below to share how much you enjoyed Jennifer's post.
                                                                                                                                  Lorrie

Born August 15, 2006 Caden was a beautiful little boy who loved to be held; actually he only liked to be held so we did a lot of it. I have never been as thankful for recliners as I was in those early months of his life. He also wasn’t a fan of bright lights, and we often joked that maybe I had read one too many vampire books while pregnant. 

By a year old, Caden was well on his way to talking, and he could easily identify mommy, daddy, his big sister Ry Ry, cat, dog, and several dozen other words. We would play a game in the car where I would ask him to say “mommy” and he would say “daddy.”  I’d say, “no, Caden, say mommy,” and inevitably he would say “daddy” again.  I’d smile and say “oh, okay, Caden, just say daddy,” and he would crack up laughing while he said “oh mommy.”  It was a game that we played dozens of times, and one that I have since relived, a million times in my dreams.

Around 15 months of age, Caden started losing some of his words. By the time he was 18 months old, he had lost all but two words if we count “uh-oh” as a word.  I would casually mention to our pediatrician at each appointment (due to an immune deficiency there were a lot of appointments) that I thought something was wrong, and each time he would pacify me with a story of how his little boy had lost some words too, or how another child he cared for was also extremely shy.  Each time he reassured me that this was just a phase and there was no need to overreact.  You know how we mothers can be sometimes.

Finally, one night, I emotionally broke down in the shower, and had a nice long cry over the fact that I hadn’t heard my precious beautiful boy say “mommy” in weeks.  Later that night, as my husband and I talked, we realized that the word “mommy,” and so many more, were just gone.  Our little boy no longer verbalized requests or demands; he instead relied on a gesturing system.  Shyness was replaced with the complete inability to tolerate people in his space, to the point that anyone who dared walk down the same grocery store isle as us was treated to a banshee-type scream.  Caden could no longer recognize anyone out of their context, and everything in our house was either lined-up or stacked by size and color.  And every single door in our house had to be closed as did curtains or blinds. 

Honestly, I think the pediatrician eventually gave us a referral because he was tired to hearing me ask about Caden’s developments.  I was thrilled that we were being referred for evaluation, but that joy soon turned to despair when we learned that the wait was 6-9 months at our local Children’s Hospital.  Thankfully, our speech referral moved much faster.  During that evaluation, the speech language pathologist came back in the room and asked me if I had ever considered autism.  This wasn’t one of those unexpected oh-my-goodness where did this come from moments; instead it was relief.  The relief lay in the fact that someone else saw what we saw and was confirming what I had been reading. Then, she asked me if I was interested in the new interdisciplinary autism evaluation clinic that the university was getting ready to start.  With a verbal confirmation and a signature, the evaluation could take place two weeks from that day. 

The speech pathologist confirmed the language loss wasn’t typical, and without a lot of fanfare the evaluation team would confirm that Caden was on the autism spectrum.  At the end of the evaluation day, we asked if our suspicions were on track and the therapists said yes.  Then during a one hour meeting shortly after Caden’s 2^nd birthday, they reaffirmed his diagnosis, handed us packets of papers and brochures, told us there was no cure, resources were limited, and then wished us luck, as the next family was waiting to hear  what their future looked like.

For a few moments, my husband and I just sat in the car in silence.  Then we quickly we realized we loved our son before the meeting, and we had already been dealing with the behaviors; nothing had changed other than the fact that we now had a label for which we could pursue services.  And although it seemed like the world should stand still, life marched on.

We quickly learned the autism lingo: ABA, SLP, PT, OT, SPD and so on.  We realized we were no longer just parents but, also advocates for our son and others on the autism spectrum.  Suddenly, we were living billboards and public service announcements for myths and facts about autism.  We were fortunate that we saw eye-to-eye relationally on what we wanted to try and what we wanted to avoid for Caden.  Caden, like most children, hasn’t read the autism “manual” so many of our “great” ideas have failed. We joke that we have the black hole closet for therapy items that failed to pass the Caden test.

When Caden was 3, we made the decision to enroll him part time in our local Head Start educational program.  It was quickly apparent though that while he didn’t engage the other children, he loved the routine and ritual of school, and we switched his enrollment to full time.  It was during this year that he started to regain some language and we realized how precious every mispronounced word really was. 

We celebrated Caden’s 5^th birthday on our way home from service dog training.  I can honestly say, Elf, our autism service dog, is a doggy angel who has truly changed our lives.  He has helped Caden overcome some of his anxiety and helps him work through meltdowns and sensory challenges in remarkable ways.  He certainly isn’t the answer, or cure for autism, but he has been a furry and amazing addition to our toolbox.

Life isn’t easy for a kid with an autism spectrum disorder. At the tender age of 6, he has been in school full-time for 4 years now.  Three days a week he leaves school early, in order to do in-home therapy and a 4^th day he completes his hours after the school day is finished for a total of 14 hours of therapy a week.  The therapy combines speech, occupational therapy, physical therapy, social skills, and life skills. He plays with a peer mentor from the university for a few hours each week in a variety of social settings and engages in adaptive sports at the local Y with karate, baseball, soccer, and swimming being particular favorites.  I’m sure we could be doing more, but we’re committed to allowing him to be a kid as much as possible.  Thankfully, his therapy is often play or craft-based so he enjoys the time that he puts in and he loves the adult attention. 

We are an autism family.  We live autism in our personal lives and have figured out how to incorporate it into our professional research lives.  Ironically, 6 years ago I doubt I could have defined autism for you, and never imagined that I would run an awareness page on Facebook and have my own blog dedicated to our experiences.  The road isn’t easy and it often contains unexpected twists and turns.  The thing though is that we’ve learned to truly savor the accomplishments and we know how special “special moments” really are.  For the first time in my life, I truly understand what it means to say "Life isn't about waiting for the storm to pass.... It's about learning to dance in the rain."