In many ways, writing has been a saving grace for me. I started to blog here on Finding Ninee when my son Tucker was just three years old and a new attendee in a preschool autism classroom (PAC). Back then, I was overwhelmed, navigating the new waters of transitioning from Early Intervention to a special education school, putting away my dreams of a co-op montessori, and feeling pretty lonely. None of my friends had special needs children, and hearing that Tucker would catch up was ringing less true with each passing month and unmet milestone.
I started writing to share my experience of feeling like I was navigating “The Middle World” – one where the spectrum exists but an autism diagnosis does not. I figured that there were other parents out there who were also unsure where they fit in. I know now that they – you – are out there. That we are all, at times, looking for connections.
Today, I am grateful to be able to type the words that not only have I found in-real-life friends who accept my little boy exactly as he is, but an incredible community of writers, bloggers, parents of special needs kids, special needs adults, and well, all of you. This awe-inspiring global internets that we’re a part of. It’s pretty incredible, this WWW place.
Does that mean that I never feel alone? No.
But, part of me wonders if that’s part of the deal. One thing I’ve figured out is that all of us are frightened, worried, hopeful, and also incredibly brave and powerful.
Sharing my experiences as a special needs mom has been cathartic. Healing. It’s helped me to know that none of us are ever truly alone in what we feel. That no matter how isolating staring at the ceiling in the middle of the night feels, wondering and worrying while trying to focus on the simple act of breathing, another person has been there. Somebody gets it.
So far, for me, this process has been accomplished through sharing my little boy. Sharing his differences, his challenges, and his smiles and triumphs.
When I started writing publicly two years ago, I didn’t give much thought to sharing Tucker’s face online. If anything, I felt like it was important to show people that life with developmental delays looks as happy and magical and as messy and crappy and frustrating and imperfectly perfect as life lived typically looks.
When I write about Tucker’s challenges and celebrations, you get a sense of Tucker’s Tuckerness.
But, sharing his delight through photos brings both tenderness and truth to what I type. It’s a reminder that all of us – every one of us – are more the same than we are not. It’s a reminder that parenting looks mostly the same.
It’s a reminder that life just is.
Photos are a reminder that the layers of life are the same while also as different as we are.
They’re a reminder that Tucker, like Michael Jordan, sticks his tongue out while concentrating:
That he’s just a little kid who thinks wearing a too-small dog mask is funny:
That he can’t draw carrots worth a shit:
And that he’s just a cool little boy, who thinks bubbles are awesome.
So far, sharing and advocating has been good, beautiful at times. It’s been working. And I don’t want to change anything about that.
But, as I talked a bit about in my post after attending BlogHer 14, and how much the special needs breakout session sucked, I’ve been wondering, more and more, what the between part is. The place between advocating for special needs – reminding people that we’re more alike than different – and Tucker’s privacy.
I have to confess something: I’m not sure that I want the parents of Tucker’s classmates to hear the word “autism” associated with his name.
No, I am not embarrassed, or trying to “hide” anything. Tucker is who he is. The fact that he is behind his peers and jogs laps around the room every night to relax while making kinda a weird noise is our normal. And I’m cool with that. What I’m struggling with though, is whether it’s fair to Tucker.
While it’s obvious to people who attempt to have a conversation with him that he’s very speech and language delayed, I want the parents who hear about him from their children to know him from their kindergarten stories of unshared crayons and recess friends. I want them to meet him at our field trip tomorrow and meet Labelfree Tucker.
Which is where this whole thing gets a little bit tricky.
If I want to raise awareness that special needs and autism is not scary, then people need to be surprised out of their preconceived prejudices. Which, so far, has meant sharing. I know that the photos are not necessary, but I do think that they help.
I also want to be fair to my little boy. I want to be fair to the him that he is today, and the boy that he will become. I want for the people who meet him in this life to meet him without having a label in their minds.
I also want them to have a label in their minds and I want for them to redefine what they thought that they knew.
I’m still working out how to have both. How to have empathy, wonder, acceptance, privacy, respect, and have it all be okay. Have it all be just one more imperfectly perfect part of this crazy messy beautiful WWW we’re in.
I also want to offer a reminder that life with special needs will be just fine. It will contain surprises and heartache. It will contain uncontainable joy. It will contain hope.
Always hope. Maybe, only really old photos, though…