My Middle Man

Henry WandThe Red Couch has been quiet this summer. While I have 5 or 6 posts that I started, and then for some reason, had to step away from for a whole host of reasons – perhaps dealing with a crises of some sort (lack of the proper shade of blue crayon or a missing iPod), serving as a taxi service to take someone somewhere or pick someone up, or more likely, dealing with a lack of harmony between siblings who are spending a lot of time together this summer. Then, by the time I revisit the idea, I’m either too exhausted to complete it or have lost my creative spirit in lieu of a moment on the hammock or a handful of Pringles. But, if I had completed any one of them – there would have been a focus on Henry, because this has been a summer of change and growth for him, and because in a family of squeaky wheels, he remains the quiet guy in the middle.

In just a few short days, the middle guy of our trio, Henry (aka Agent HK, Snuggles, Hen, H man), will turn 11. Double hockey sticks, double digit pre-teen, soon to be 5th grader and so far, an optimistic trombone player (I say this as when he actually has to start arriving by 7 a.m. one day a week once band practice starts, he may be a reluctant trombone player).

Henry arrived late (allow me to add this has remained a constant theme throughout his life) by almost a week. Both his siblings were C-section babies, but he arrived in a more traditional fashion – with prompting by way of Pitocin, of course. After the surprise at Elliott’s arrival of learning we had a boy rather than a girl when the doctor had shared with us at an ultrasound “90% girl – paint the room pink”, I remember asking the ultrasound tech when I was pregnant with Henry not to tell us if there was any shadow of a doubt because not knowing is better than thinking you know and being wrong. Ultrasound technology advanced during that brief space between E & H, and this time, she printed a photo with his gender clearly indicated. Tom asked what the red color was, and she said “he’s peeing”. When Henry made his grand debut a few months later, he came out peeing, and nailed the doctor squarely in the face. And of all 3 of our babies, he nailed us during diaper changes by far the most. Henry is the reason we had to paint our room – twice, in his first year.

I remember that he got his nickname “Snuggles” right away because he loved to be held. He was sweet and cozy and very easy going from the beginning. He was perfectly made to follow in the footsteps of someone who is anything but easy-going, and that, my friends, is where it gets hard. Here comes the Mom guilt . . .

Henry and Elliott are 21 months apart, so Henry arrived squarely in the middle of our first concerns about Elliott’s development. Elliott was in the midst of doing language assessments, and just starting to exhibit some aggressive behaviors which would eventually lead to his diagnosis with autism.

Many parents can confirm that going from 1 child to 2 is an adjustment. Unlike with baby #1, there is no more napping when the baby naps because you need to be there for baby #1 who, in many cases, has a very different schedule than baby #2. We had all that and more as Elliott’s challenges, needs, and behavior spiraled out of control, and eventually led us to an autism diagnosis. It is a time that I still struggle to allow myself to revisit because of the pain and the darkness we faced.

There is some really ugly stuff – I’ve never written about this time because I have so much regret for basically missing Henry’s first 2-3 years of life. Sure, there are blips I recall – I remember taking our tiny newborn to the state fair in the new double stroller our extended family had given us, standing in line for lemonade, and looking down to see blood running down the back of his tiny fuzzy head and realizing that his older brother was hurting him. This was the moment I had one of those realizations that something truly was not as it should be, and that we were dealing with more than just a speech delay. This may have also been the time that I had it out with our pediatrician who rolled her eyes every time I came in concerned about something with Elliott and said I was just an anxious Mom – we switched providers, and have never looked back (thanks, Gretchen).

But most of all, it feels like Henry’s first few years were like a movie that I missed most of – and I find myself trying to piece it all together even now because I wish I could have been more present for it. Bottom line – he got a raw deal. He got parents who were completely overwhelmed by the emergence of autism, lost in their own grief and overcome by the enormity of what seemed to be an insurmountable mountain of challenges faced by his older brother. Every now and then, I remember waking early and holding baby Henry while he ate a bottle and just looked at me. He would squeeze my finger, smile at me, and commence to pee on me when I changed his diaper. I cherish those memories, even though they didn’t happen nearly enough. And frankly, I deserved to be peed on.

I also remember that both of our Mothers’ gave us heat for keeping Henry in the bassinet much, much longer than we should have. He was so long that his feet (which were on the large side to begin with) would hang over the bottom edge, while he comfortably lifted his arms over his head like a guy on a sofa during football season and showed the world an overbite that we thought for certain would mean early dental work. But what our Mom’s didn’t know because we were not ready to share with them was that he needed to be with us in order to keep him safe. Elliott was able to exit his crib, even with the added safety features we continued to add, and was drawn to his baby brother. These were the earliest and darkest days of autism, and while they were not pretty, I’m happy to say that Henry did eventually learn to roll over, sit and even walk. But for a time, I loved walking into my room and seeing his giant toes hanging over the edge, his comfortable looking overbite in full view and his favorite fuzzy green jammies as he snored in a bassinet way too small for him.

As 2 and 3 whizzed by, Tom & I suddenly realized we may be living with a genius. Henry learned to talk right on schedule and without any real effort on our part. He instinctively knew how to play with toys, and could sit in his sand box making up characters and scenarios for hours (his favorite imaginary friends were Pachau, Larsson & Lollipop). We kind of thought we had one son with significant learning challenges, and another who was Mensa material. But, as time marched forward, we realized that Henry was just a typical guy – extraordinary to us, of course, but after watching a child struggle to learn each and every little thing as Elliott had to do, witnessing typical development was kind of overwhelmingly cool. Wow, kids just grow up instinctively knowing how to play with toys – who knew?

Henry grew up with a bevy of therapists (who we call “big friends”) in our home, and for the most part, has always been a willing participant in the process – helping to teach new skills, making video modeling segments, participating in group activities, etc. He learned sometime around 2nd grade that not every family has “big friends” at their house – which was kind of surprising for him. Best of all, he was able to showcase many of his creative, artistic skills with lots of fun big friends, and in several instances, I don’t really think he got that they were not really there on his behalf (which, of course, is a good thing!) It was a different, fun, inclusive way to grow up, and ultimately, I think it’s helped him to be around such a wide variety of personalities from an early age.

I remember at one point talking with my some of my Autism Mom friends about when they had a sit down with their kids who were siblings about autism. I worried about the right time to share with him his brothers’ diagnosis, and that perhaps we had not been upfront enough. So one day as he worked on an interesting art project that would undoubtedly end up on our refrigerator, I launched into my spiel about “you know how sometimes you feel like your brother is not listening to you, and you get frustrated that he always wants to be the first one to open the garage – well, guess what, there is a name for these things and it’s called autism. I paused – he looked up at me and said “I need a snack”. He was not ready, and that was ok. In time he was, and then he let us know in his own Henry like way.

Several years ago, as he was just starting to “get it”, Henry & I were designing t-shirts for our first ever Autism Speaks walk. I remember him really excited to be a part of it, and wanting to help choose colors and designs, etc. Suddenly, he got kind of sullen and I asked what was on his mind. He looked at me, concerned, and said “Mom, if Dr. Larsson (E’s Psychologist) gets all the autism out of Elliott’s brain, do I still get to keep this t-shirt”? Priorities . . .

He’s always had a sense of compassion about having a brother (and later, a sister) with autism that just occurred naturally for him. His easy-going nature likely helps, but he’s always been able to accept that some things are really easy for him that are not easy for his siblings, and there are some things his siblings are really good at that he’s not. Sure, they’ve had their days, and I can’t say I didn’t smile when sometime around 7 or 8, Henry spoke up after a giant Elliott meltdown and said “someone around here with autism is in a really bad mood”, but for the most part, this is the only family life Henry knows, and so far (gulp), he’s ok with it.

I worry about him, (come on, I’m a Mom – it’s my job!), but in ways that are different than for Elliott & Ada. On hard days, does he get enough attention? Do we give him time to explore who he is outside the autism bubble, and does our parental guilt allow him too much screen time because when 2 kids are in full-on melt-down, it’s easy to let it happen? When he is so shy that his social skills are ever so slightly off, should I conceal my panic better? Being a bit introverted and shy is his nature and his role models from home are not as sharp as some in this department as they could be (including his parents who need to stop praising people in public for having great friendship skills because it’s always on autopilot to acknowledge such things). He’s just a reserved guy, and would have been with or without siblings with autism.

Someday, Tom & I will no longer be here, and naturally, I hope that if we’ve done anything well at all in this crazy parenting journey, that we’ve instilled in Henry & his siblings a sense of togetherness through thick and thin, compassion for the struggles we all face, and an ability to laugh at our own dorkiness. Sure, there is always the chance that Henry will grow up to resent having grown up between two siblings with autism, and all that that entails, but whether it is just hope or even fear on my part, I don’t believe that will ultimately happen. I see glimpses of hope between the episodes of sibling ugliness (which includes Henry’s evil laugh), and I feel like they are in one another’s’ corner. This makes me smile.

Henry is wise beyond his years, having had to learn some tough life lessons much sooner than many, and while it is true that he wants too much screen time, is awful about keeping his room tidy, is a procrastinator like no other, and is always the last one ready to do anything, he is grounded in ways at 11 that I struggled with at 40, and I’m proud that he once lived in my uterus, (even when he peed on my walls).

This summer has been full of changes for Henry – he’s grown several inches, so much so that I need to get him all new jeans unless capris are suddenly in for 5th grade boys, he and his brother are eating me out of house and home, and in general, it feels like he’s gone from being a kid to a teenager overnight. He’s chatty, he’s expanded his circle of friends, he cares about what’s going on around him, and he likes to watch Dateline with me every Friday (I know this is short lived, but I’ll take it for now). And while I still feel a sense of guilt for having not been as present for him as I should have been during his younger years, I’m enjoying every moment of watching him evolve into the young man he is destined to become. While we are certain to have our share of ugly moments as adolescence looms, what I love about Henry is that he owns his awkwardness, and can spin any ugly family moment into a squirt gun fight. I see his slightly evil/off-center sense of humor emerging (my genetic gift to him), and ultimately, I know that no matter what life hurls at him – he will be ok. Bring it, 11!

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