A few months ago, I wrote a post about my son Graham. I was blown away by the response I got and the lovely supportive comments and emails that followed. At the end of that post, I mentioned that we were waiting on the Seattle school system, waiting to see whether a) doing the right thing for our children or b) bureaucracy would win out. I’m happy to tell you that this one went to the good guys (and gals).
About a week before the developmental preschool program was set to start, I got a call from a woman who told me she would be Graham’s teacher. We set up a meeting at his new school and were introduced to his teacher, the room assistant, the speech therapist, and the director of the entire program. We agreed on an IEP (Individualized Education Plan) for him with goals for the next few months. We were assured that the (now updated) results of his testing will follow him for the next three years, so his status as a student with special needs does not change as we approach next fall and the utter confusion that is kindergarten in North Seattle. We were assured that they would help us navigate those waters.
Graham’s new schedule started on September 21st. He goes to school from 1-3:30 four days a week and also continues to go to his old prechool 9-12:30 three mornings a week. On Monday and Tuesday, he is essentially in school from 9am-4pm. This is a lot of a yet-to-be five year old who was still taking a 2-3 hour nap almost everyday up until the schedule change. The first few days, when I got on the little school bus to help him off, he was totally passed out. Evenings became really tough for him as the exhaustion set in. We re-organized. We set his bedtime much earlier – the same as his younger brother – and things improved. Now he seems to be adapting to his new schedule. And he is very happy at his new school.
Graham comes home singing songs I have never heard before and talking about parts of his day without prompting from me. He brings home art projects he is extremely proud of and he finally – finally – potty trained. I was starting to wonder if he was going to go off to college in diapers when his new teacher suggested that we tell him the rule at the new school was underwear only. Within four days he was completely trained with not an accident since. It was yet another lesson for me in not underestimating the wonder that is Graham. When the light switch turns on it is on.
Our new routine is as follows. I pick up the boys at morning preschool, drive to the “new school” which is, thankfully, only a few blocks away. I park the car, gather up the boys, and then we begin one of the sweetest 1 block walks I will ever know in my life. Yes, it involves shivering and/or getting soaked these days, but to hold two little boys’ hands – one of them wearing a backpack almost as big as he is – as we approach a real live big boy school… It’s almost more than I can handle. Nostalgia for what will not be someday overtakes me and I sometimes just have to stop and watch them. I know it’s just the blink of an eye before they will stop holding my hand and then just another blink before they don’t want to talk to me at all.
Graham turns five years old at the end of this month. I had thought about writing this post in honor of his birthday but I had an experience while at Jen’s yoga retreat a couple of weeks ago. Not to sound too woo-woo on you here, but I always dedicate my yoga practice to Graham. Some yoga teachers will invite you to set an intention at the beginning of a class and it is always his beautiful face I see at that time. No thoughts, just his face, and the hope that my practice will send some extra energy his way. He is my intention, my dedication. Just like every time I catch the clock at 11:11 or I throw a penny into a fountain, I think of him – wish something for him.
In Jen’s peaceful serene yoga room, I poured out stress and toxins with my breath and my sweat. At the end of two hours, I felt utterly spent and exhausted in the best kind of cleansing way and laid happily on my mat for shivansana. In the first few moments of that rest, Jen turned on some of the music from The Mission – that glorious, heart-stirringly beautiful piece of music that can bring tears to my eyes even when I am not feeling overly emotional or exhausted. And in a moment, I had tears streaming down my face, mingling with the already drying sweat from the class. In that moment, the following thought came to my mind – almost as if someone had whispered it in my ear or I had seen it written on a blackboard – “Why Can’t It Be Enough?”
The day before I had spent the morning with Graham. He had a very low grade fever, with no other symptoms, and I decided to keep him home from school. I still had errands to run and he happily came along with me. Before we went to pick up his brother, I took him to lunch at one of his favorite spots. We were sitting there, waiting for our lunch, and I was over-conscious of the fact that we weren’t talking. It’s not as though we were silent, but there was very little back and forth conversation as there would be with a typical child of his age. I wanted that, the flow of conversation, so badly. I asked him questions on topics where answers could come easily for him, and I would get my one or two word answer, then – quiet. I just kept running my hands along the baby-soft skin of his cheek, or bringing my face to the top of his head for a kiss and inhaling the intoxicating smell of clean little boy hair. I told him I loved him. I told him I was proud of him. He kept looking at me and smiling, unaware that I was longing for more.
In my shivasana moment, I saw that scene again with new eyes. And therein lies the question – “Why Can’t It Be Enough?“ Why can’t who and where he is right now be enough? Why must I always notice who and where he is not? This is not new territory – it is my biggest challenge with him. And what I really mean by that is the challenge with myself. Choosing to celebrate all the many varied things that makes him wonderful instead of pointing out (in my own mind) all the ways he is not like his friends is just that. A choice. And here is where a mom in a movie would suddenly change her entire her attitude and embrace her child wholeheartedly. Everything would change and happiness would prevail until the credits rolled.
Obviously, this is not a movie and life is more complicated. I am not one of those people who can wish something and just make it so. I wish I was more peaceful about having a child with special needs and I work hard at it every day. Sometimes I am so thankful for him that I can hardly believe my luck. I watch a child on his preschool playground haul off and hit another child and I wonder, “Is that what I want? A typically developing bully?” Of course not. I’ll take my speech and cognitively delayed sweetheart any day of the week. My baby who thinks life is nothing but fun and happiness – as every almost-five-year-old should. My baby who who touches people’s lives. When he leaves morning preschool, there is a chorus of “Goodbye Graham!” from kids and teachers alike. Sometimes I can’t help but wonder what lesson I am being taught by the challenges he brings. I struggle. But lately I keep coming back to that big question and it makes my vision blur every time.
(I love this picture of him. It is pure Graham. Smiling and in motion.)
I don’t have an answer here and I certainly don’t have any advice. This will be my journey with my older son. My journey with Spencer will be different. Randy asked me if I ever make a wish for Spencer or dedicate my practice to him. Nope. That boy will present other challenges but he does not need my yoga energy right now. Every parent travels down a path with a child. Sometimes that path is clear and easy and sometimes it is twisted and complicated.
When we first settled into speech and classroom therapy with Graham, about three years ago, his teacher handed out an essay that a woman with a special needs child had written. It’s called Welcome to Holland and it compares awaiting the birth of a child to planning a trip to Italy. You buy your tickets, you book your hotel, you anticipate the food you are going to eat, the sights you will see, the people you will meet. On the flight to your long-awaited destination, the flight attendants tell you to prepare for the landing in Holland. Holland? Windmills, canals, wooden shoes – what? At first you are floored by this change in your itinerary – your entire world is thrown off. Your arrival takes a huge adjustment. This is not at all what you signed up for. And then, slowly but surely, you do learn to adjust. There are wonders to behold in Holland. It is different than Italy but it isn’t any less special.
I never thought I had expectations for my children. I would be fine with them being a railroad engineer or a physicist. They could go Ivy League or state school, or no college at all. They could be an athelete like their dad or a thespian like their mom. I guess I just always assumed they would be “normal” and I think that is why I got Graham. My favorite comment from my last post about him actually came from the director of his morning preschool, herself the mother of a child with special needs. I’m paraphrasing here, but she said that these children come to us not necessarily to teach us a lesson or because we can handle them or we “deserve” them. They come to us because we as parents are strong and we can advocate for them. They need us to fight for them. I hold onto that thought everyday because it is such a strong and powerful way to think about life with Graham. I got him because he needs me and because I am lucky.
