This summer has been an unbelievable roller coaster of change for Nate, an amount so great that most adults would have melted under its weight. Nate has managed these changes incredibly well, all things considered, and we’ve learned a few things along the way, most importantly that Nate understands more than we thought about what’s going on around him.
The summer started with a farewell to Nate’s beloved Birth to Three therapists, whose tenure expired the day before Nate turned three. He started public school on May 21 with a host of new therapists in a massive (to him) school with lots of kids and sights and sounds. As public school ended about three weeks after Nate started, and one of those weeks was spent at Disney World (Chad had a conference), Ms. Susie used the time to help Nate acclimate to new friends, a new schedule, and a new environment. Then Nate had a 2.5 week break, the longest he’d ever been out of therapy since he started at 18 months. He spent part of it at home with me and part of it at his old day care so I could keep up with my freelance work. In July, Nate started Extended School Year (ESY) – same school, same friends, same classroom – all different teachers! Only one consistent teacher remained – Ms. Mollie, Nate’s speech pathologist, who he sees briefly almost every day. All of the other adults were new. He had another 2.5 week break (part time at home and at day care) and, finally, started the academic year last week with two of his best buddies (his other classmates graduated to kindergarten) and his academic year teachers — but in a new classroom. Seriously.
Add to this mix Chad’s return to school. Chad is in an executive MBA program at Yale that requires him to be on campus every other Friday and Saturday for 22 months. (The students stay in a hotel.) The program began in late July with a two week immersion during which they completed four full courses. That meant that Chad was gone for two weeks and by gone, I mean gone. The coursework was so rigorous that he barely had time to call and say hello. The boot camp was during Nate’s last two weeks of ESY and I foolishly thought that Nate wouldn’t notice. I didn’t think Nate had any sense of time and there are many days where he just sees Chad for 10 – 15 minutes in the morning for breakfast and is asleep before Chad gets home – so maybe this experience would blur all together. Well, guess what, people? Nate knew. And without the words to express, “Where’s Dad?” or “I miss Dad!” or “GET ME DAD!,” self-injurious behavior was back in full force. Nate repeatedly fell to the floor in a backwards-W sit; the insides of his knees were black and blue. He couldn’t sleep through the night, often starting the day between 1am and 4am (you didn’t read wrong) and when he woke up, he cried rather than his usual “ABADAH!” morning rally cry.
After the first week of Yale program, the students got some time off for Family Weekend and Nate got to see Chad for a night. You never did see a happier boy – Dad came back! We packed as much fun as we could into our time together and, on Sunday, went to the Family Weekend party at a country club on the water to meet Chad’s classmates and their families. It was a really hot, really muggy day. The country club had no air conditioning and Nate didn’t enjoy the feeling of his shirt sticking to his body or his sweaty hair. They didn’t have much Nate-friendly food and all Nate wanted to do was jump in the ocean. Though we brought swimsuits, it was high tide; the waters were rough and filled with ooky seaweed. We left the party quickly in a full-blown autism meltdown (way different than a neurotypical toddler meltdown) and, after fifteen minutes of trying, managed to wrestle Nate into his car seat where he promptly fell asleep. I dropped Chad off at his hotel and, when Nate woke up, Dad was gone again. No bueno. But that second week went better. Somehow, Nate gained a sense that Dad was going to come back. He didn’t understand when but knew that he was going to come back — so Nate had a bit more patience during that final week. We also managed to get Skype to work. While Nate didn’t understand it, he did get to see a moving Dad picture so that helped bit, too.
As if all of this wasn’t enough, enter a family crisis. My mother-in-law had a routine surgery a week and a half ago, which had post-surgery complications. She needed additional surgery last week near her home in upstate Maine. When surgeons were unable to successfully complete the needed work, my mother-in-law was flown by medical helicopter to Boston for additional surgery. The family rallied. Though Maine family was racing the helicopter, it would take them 5+ hours to get to Boston. We live 2.5 hours away, so Chad left work and raced up the highway. He stayed in Boston all weekend with his brother and two aunts, seeing his mom through a third surgery. With an anticipated week-long stay in ICU, Chad came home yesterday to be with us and returned to Boston today to let his Maine family go home. He’ll stay through Thursday when other family members will arrive. Chad has school on Friday and Saturday and then will be home. (We’re in the process of figuring out coverage for the following week.)
Again, Nate knew something wasn’t right. He knew Dad ran out of here quickly, with a suitcase no less, and noticed that I was on my cell phone, home phone, and using his iPad to keep up with all of the communications between family and the hospital. Again Nate couldn’t sleep. Again Nate started to hurt himself. And, again Dad returned home and all was right in the world.
This morning when Chad had left again, we planned it out a bit better. I told Nate the story of where Dad was going a million times. I explained Chad was going to bring Mam the awesome helicopter picture that Nate made and Dad will be coming home on Thursday. While Nate’s in school today, I’m going to make a countdown chart with PECS that he can put in an “all done” pocket to help Nate visualize when Chad will be home. I’ve been emailing with his teacher Ms. Susie all weekend so she’s aware of what behavior problems might be coming her way this morning. In short, we’re trying to cover every single angle we can think of.
After the oft-repeated speech, Nate and I went to the door with Chad and we had a tearless goodbye. Nate said, “BUHBYE!” to Chad and waved. We closed the door and went in the living room to watch our ol’ pal Curious George. Hopefully we’re on a path for understanding for Nate — and for my mother-in-law’s recovery.
To celebrate Nate’s stellar management of change (and, yes, to distract him), Nate is now the proud owner of an ImagiNext Castle. It’s a line of pretend play toys for boys by Fisher Price. Nate’s never taken to any pretend play toys before but this one is the golden ticket. He spent an hour playing castle with Chad last night and, when he woke up at 5 this morning, Sir Nate ran to set up a battle. Nate is appropriately playing with this toy, imitates our actions when characters (including Curious George…he lives there, too, you know) climb up and down the ladders, and shoots round disks through the air with the catapult. In short, it’s a playtime miracle. When Nate started Birth to Three at 18 months, we had to literally teach him how to play. And now, at 3 and a quarter, Nate’s starting to get the hang of it. Complete and total awesomeness.
PS I haven’t been able to blog as much as I’d like to but am posting regular updates on Nate’s Facebook page – so come on over and be his friend!