It's a scene from one of Simon's favorite movies "Finding Nemo". Nemo is newly relocated to the dentist's fish tank. It's the first night and Gill and the gang are about to initiate him into the bonds of tankhood. He has to swim through the ring of fire and hasn't yet discovered it's just bubbles. The drums are building, Mount Wannahackaloogie is looking ominous and Peaches, the starfish, cries out "Isn't there another way? He's just a boy!"
I feel like Peaches. I know that it's just some bubbles and it's not really as scary as it looks but all I want right now is for Simon to just be a little boy.
I'm ahead of myself. Let me back up.
On Tuesday I was sitting among my fellow chaplaincy students trying to figure out lunch plans. We had just broken in the middle of a long day and even before I could put my $.02 in about where we should eat, my phone rang. It was Dr W's office (Simon's pediatrician) and I had to answer, given all of the red tape we are going through to get Simon authorized for a special feeding therapy program (more about the denial, appeal, new authorization, major fight later). Dr. W does have some news on the feeding front but at the end of the conversation throws out "Have you ever thought about getting Simon assessed for some of his behavioral issues? I think maybe we should look at that and think about getting him assessed to see if he falls on the autism spectrum."
It's kind of out of nowhere and kind of been sitting there with the shortstop ever since Simon turned three and had his final assessments done with the Regional Center. At the time, they assessed him for Autism just to see if he might qualify for additional services. He did not. It's not that we were relieved, we weren't phased really. A little bummed about not getting free diapers or other services through the regional center, but at that point, Autism didn't seem to be a possibility. We were just beginning to see parallel play with his peers, eye contact with him had been a religious experience since birth, and his language was just starting to explode.
That's not to say it hasn't come up since then. It's been batted around by different folk at different times with mostly a "I don't think that's a concern, look at how he..." and to be honest, was not something that Jaime or I thought we needed to pursue given our ease and abundance with services received through the district. Simon has had two wonderful special day classes since he turned three. In my opinion, both have been just perfect for him. He's had Speech therapy and occupational therapy through them, both at what we think is just the right frequency and he's had physical therapy and Hippotherapy (horse) through our private insurance. He has grown and changed so much in the last two years.
There are quirks. There are delays. There are signs.
There are signs that we don't have all the answers and it's not just a series of delays that are separate and distinct from each other. There is more than just a fine motor, pragmatic and expressive language issue. There are social issues, echolalia (repeating over and over a phrase that he's heard before), and his limited interest in varied activities. So maybe there is something there. I don't know. We're going to pursue testing. It's been five days since my conversation with Dr W and I'm feeling calmer about it.
At the time though, the only thing I could think of was "I just want him to get to be a little boy. He's just a little boy." I was Peaches and there was the ominous cloud covered, about to explode, mount Wannahackaloogie. It was about to erupt with yet another label to be burned indefinitely on to my boy. Cardiomyopathy, tube-fed, special needs, developmentally delayed. He's fucking 4!
Yes, he loves dinosaurs, racetracks, dragons and Jewish holidays and blessings. But when we talk about Simon we talk about all those things plus the aforementioned. Those pieces of his identity follow him where ever he goes. Some of them will follow him for the rest of his life.
How many of us have things from when we were 4 that we can say are still part of our identity? Sure, there are the things that we can say people saw budding in us as four year olds but I think that our sense of self, and the way in which the worlds sees us, really doesn't form until adolescence. I know there may be some holes my developmental thinking. Still, for those of us that have had major pieces of our identity show up that early, it's not always a pleasurable thing. Especially if it's a piece of identity that is not popular or easily integrated into the larger institutions that make up our culture or society. People of color, poor people, people with significant physical differences, medical issues and developmental differences have an additional daily practice of working harder to make it work. It may not be true every moment but it is true. It's the way our schools, government, military, media,economic and medical institutions are set up.
It's political and shit. It speaks to a larger history of oppression, exclusion, and fear of 'other'. It's something I've felt passionate about ever since I was 9 years old and felt the flint spark a fire about justice. AND
I'm his FUCKING MOTHER AND I WANT HIM TO JUST GET TO BE A LITTLE BOY!!!!
I'm tired of thinking about therapies and services and developmental milestones. This is in addition to life saving medications and heart functions and insurance authorizations. 'Tired' isn't the right word. These last few days I've been closer to furious and it's not just because his IEP meeting is tomorrow and we'll find out the results of all of his assessments (not for Autism but for Kindergarten) and what extra services he may or may not qualify for. Of course it is. But to be honest, that's just one marker of how my son doesn't just get to be a little boy. He is a patient. He is a score on a measure. He is a series of markers that may or may not qualify him for an additional lifelong diagnosis. He is a heart function percentage. He is a case to be reviewed. He is a weight and height ratio that determines his caloric intake and medication dosage.
In those quiet moments when I can sit outside myself and my life...I see all of it that make up the whole of who he is. The labels, the quirks, the sweet parts, the frustrating four soon-to-be five parts...and I know him to be a whole, perfect little boy. One perfect little boy that is walking his path in just the right way.
...and when I'm not that evolved and get a call like I did last Tuesday, I grieve. I grieve for the little boy that has so much to carry with him. I grieve for the Moms that don't ever get to have the carefree parenting experience that only involved stressing about the million and one things you thought you knew about parenting. I grieve for the boy that will (hopefully) grow into a man that will have to manage his own medications and regular doctor visits when his friends are worrying about saving up enough for their own car.
Peaches asked if there was another way. There isn't. It's not that this way contains only grief. Simon is a loved, lovable, loving little man. He's hysterical and frustrating and generous and a kooky little boy. He is gorgeous and messy and smart as fuck. He's Jewish and has two moms and mess of grandparents and aunties and uncles. He's short. He has blue eyes and a birthmark on the bottom of one of his feet (and I am not a terrible mom that i can't tell you which one). He has a heart condition.
Some of those things might change. Some of them won't. He has so much more to be. As his mom I just want the world to be ready and celebratory for the so much more that he has to become.
Poof! It is now so.
Shark Bait Hooo Ha Ha!!
Yeah I'm still working on eating, what of it?!
Simon with his buddy Nathan. The swoon factor is off the charts.
Overall series Simon and his G'paw at Fairyland in Oakland Simon is rockin' his little boydom'. Mommy is still workin' it out.
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