Yesterday, something kind of crazy happened. E man slept in, and we had to wake him in order to get to school on time. Let me be candid – this is unheard of. Unless there is an illness – & I’m not talking head cold – this just doesn’t happen. Since around the age of 5, E has been consistently rising at 5:30-6 a.m. Yes, it’s a bit crazy early, but it’s kind of his deal, so we’ve just come to accept it, and have found ways to work with it.
This morning, he told us he woke at 3:50, and has been up since. He had that look on his face that immediately tells me something is not ok. I don’t know how else to describe it except to say that he looks kind of drunk – laughing inappropriately, clapping, taking his sister’s pink blanket from her room and taunting her with it until she screams, etc. It’s just something that has popped up here and there over the years, and it’s a little like a temporary loss of about 10 years of development. Additionally – let me add that all this fun occurred before coffee, fyi.
I don’t know why, but the poor guy has been all over the board lately – in general, throughout his 13 years, we’ve sort of come to expect a variety of phases. While some are not so easy to help him work through, we’ve learned that often the ugly stuff leads to really awesome periods of progress. This doesn’t necessarily make it any easier during the tough stuff, but we can often look back and realize a pattern. That said, typically the phases last weeks or months – not crazy random days of amazingness followed by visits from stims and behaviors we haven’t seen in years. Usually, March is fairly unpleasant in our little corner of the world, but for some reason, it wasn’t this year, and May seems to be the funky month. Poor E’s spirit seems a bit tattered right now and I have to wonder if he’s as confused by everything as we are.
There could be a million reasons for this. It could be seasonal allergies – which he struggles with on and off during the spring months every year. Maybe it’s a growth spurt and he’s just feeling funky in general. It could be that his first year of middle school is coming to a close, and he’s processing in his own unique way the many triumphs and struggles he’s experienced this year. Maybe it’s none of the above and there is no explanation – which sucks, but happens in the world of autism – maybe to keep us on our toes. No matter what, it kind of tears me up inside. I know – I get that every kid goes through peaks and valleys and that E is no different in that respect. But his peaks and valleys are quite a bit steeper than most, and he’s unable to communicate with us in a meaningful back and forth way what’s going on. It’s just such a hard thing to see my kid struggle, not know why, and not know how to help him. It would be so helpful if we could just find a way to add a few tools to his toolbox at times like this.
He’s not alone. While E’s challenging phases are usually a bit more visible than for his siblings, Henry & Ada are dealing with their own funkiness right now as well.
Case in point – last week, as we were going about our regular morning routines, I was jolted back into autism reality by a braid. It started so innocently – I asked Ada if I could try braiding her hair, as I’m a bit of a loser in the creative hair department. A pinch of background here – Ada previously struggled a great deal with adapting to change especially when it came to varying her clothing choices, and wearing anything but a ponytail – and I mean a ponytail directly in the center of her head – not too high, not too low (yes, this matters). It got serious enough that we had a therapy program in place to help her work through these challenges – this involved multiple wardrobe changes and a variety of hair styles several times a day. At first, there was a great deal of hissing and scowling, but before long, she wanted her own triple barrel curling iron and was posing as her sassy self for pics. It’s been over a year since we worked on that program, but suffice it to say, I’m realizing my lack of practicing creative hair techniques has not been helpful for the 1st grader.
After an hour long melt-down complete with both of us in tears, I finally got her to school. We were late, so I did my best to give Mrs. E the 1-minute version of events, and assured her that I don’t typically take my offspring out and about with ½ braided hair that looked as if she’d been through Hurricane Katrina. It just hurt to see her struggle with something I really felt was in her past, and reminded me not to take all her hard work and progress for granted because it was a long, sometimes difficult but amazing journey to get her to where she is now.
And then there’s the middle man – Henry. Growing up between a brother and a sister with autism has given him a unique prospective, and me constant guilt. Does he get enough attention? When his siblings are struggling, do we do right by him? Is he destined to hate us and move as far away as he can get at 18? Are we allowing him too much screen time? Suffice it to say if for some reason I’m not feeling guilt and angst about a myriad of things – then without a doubt I am when it comes to Henry. On top of that he’s quiet, shy and introverted. He’d rather avoid the limelight whenever possible, and now that he’s edging closer to his teenage years, he doesn’t want his sensitive side to show through. He does, however, watch “Frozen” with Ada and tell us he’s just doing her a favor – but I digress.
Over the years, he’s connected with a great group of guys from school, and because his life has always been a bit more sheltered than most, this has been a terrific outlet for him. Their current passion is playing Minecraft together, and unfortunately, as almost middle-school-guys do, they are experiencing a bit of drama of late. I sensed something was off when he didn’t want to immediately get on-line with the guys after completing his homework last week – this is highly unusual. I don’t know the full extent of this saga, but I did have margarita’s with a fellow group members Mom. She filled in some of the blanks, and Henry is starting to share bits and pieces with us as well.
This is a tough one to navigate. Henry does not have autism, but I do believe that growing up alongside siblings who struggle with social interactions and relationships has not given him as much practice & experience in these situations as his peers. He’s just not as socially savvy as most, and frankly, these are not easy lessons to learn – especially for adolescents. It’s a fine line balancing his need for independence and privacy while still supporting him through the difficult stuff. I tried connecting with him by sharing that Tom & I had some similar experiences in middle school. Ok – not with Minecraft – but I distinctly remember an argument about whether Shaun Cassidy or Rick Springfield was more awesome, and believe me, it was U-G-L-Y! Henry was completely unimpressed.
Just as it is with his siblings – it’s hard to see him hurting, even as he learns some valuable lessons.
So – there you have it. This is not earth shattering stuff, but everyone has just been “off” around here. Even if it’s a necessary and natural part of development, watching your kids stumble, fall and have to get back up again is never easy – autism or otherwise. I’d prefer they would work through these things one at a time rather than the trifecta approach, but it is what it is, and no matter what, we’re in this together.
Still – there is hope. Even though E was up crazy early today, he didn’t wake anyone else up, watched the morning news, and shared what he had learned about a tornado story that had aired. Holy crazy awesome! That he was listening to news reports and recalling them on his own is beyond fabulous & entirely new. Then, just a few minutes ago, he came down to get a book about states that he wanted to read. Honestly – who is this guy? Glad to have the drunk-like guy gone, and the E man back!
Ada had that horrible braid day, and then came home and told me that even though she thought having the braid at school would be really hard, it actually wasn’t. She also asked to try a side braid next. Either she is fascinated with the 1980’s or remembered that she in fact can work through difficult changes, and come out stronger for having tried.
And H man has been agreeing to side leaning hugs (kind of like the Duggar’s, but way more awesome) despite his adolescent coolness. He chatted with me about how to forgive friends who make mistakes and how to figure out who is a true friend. Kind of heady stuff for 11. After all that, we shared some cheez-its and he showed me lots of fascinating clips of “vintage” video games that he is currently passionate about.
There is always hope . . .