I arrived at the seminar last night, just after it had begun. I spied an empty seat and as I made my way there, I recognized faces of some of the attendants.
The seminar was, “Transition: Overview and High School Graduation Requirements.” This seminar focused on children with special needs who have IEPs and their transition process.
The speaker, who I saw once before in a seminar on IEP’s, is top notch in these subjects. So when I saw she was conducting this seminar, I immediately registered. She has 4 children of her own, 2 with special needs. She is funny, she is engaging, and most importantly, she is knowledgeable of the logistics of navigating this system and has walked the walk. She understands the emotions that encompass this journey. It’s one thing to “know.” It’s another thing altogether to understand. She got both in spades.
I took lots of notes during this seminar and the speaker did not disappoint. She was full of knowledge, anecdotes, and relatable personal stories; my favorite part about live seminars are the bits and pieces you pick up from a speaker that has “been there done that.” They all hold lessons, tools of the trade, and the emotions attached to these that a black and white book could hardly hope to match.
And her personal stories; those are what got me as I went from copiously taking notes, listening to the neat and organized bullet points of the presentation, to hearing about Susan, Jon or Jack’s experience.
There’s always a small, but meaningful trigger that reaches down and pulls our emotions immediately up, front and center before we even knew what hit us!
Now, in this type of seminar, that is expected. I mean, this is a big deal. I knew that going in. That’s why I was there. But, like so many things, it’s our day-to-day life that consumes until the big pieces are brought front and center. Life changes so much with Wil. Some days a certain technique will work and we are three steps forward, then the next day it’s a complete shut-down and we are five steps back. Certain subjects in school will appear to make zero sense to him for months, so in his IEP goal-setting we will give Wil a generous amount of time to achieve this goal with various steps to get there, then one day, a light bulb will turn on, he’ll skip all the steps and we are at goal before you can say IEP addendum!
So while these big pieces like high school transition loom out there and always stand at the back of my mind, what begs to stay forefront is the day-to-day as Wil makes his way toward middle school. However, as he is entering middle school, we are at the beginnings of needing to make decisions on his high school path. This big unknown is moving up closer and is begging to be seen.
The big unknown, that big future picture with so many of those squiggly question marks hits hardest when we receive our child’s diagnosis. No parent forgets that time. Just as with any major life event, we parents remember where we were, what we were doing, at that exact moment we received the news. When someone asks when I found out Wil had Down syndrome, it’s like this zoom lens camera takes me right back to the hospital room. That moment is frozen in my mind for all of eternity.
But then time goes on, and I learned a little more about Wil’s diagnosis, and I found the services available, and met some amazing friends on this same journey, and learned more, and met more people, and learned about more services and options along the way. So while there will always be big, unanswered questions that loom, they start to fall behind the day-to-day. There are all these beautiful qualities about your child you discover, that zoom to the forefront. And many of these beautiful qualities about life you discover, are because of this diagnosis. You only discover these by living the day-to-day with your child. Why, just yesterday morning walking Wil to the school’s front door, he started catching snow flakes on his tongue. “Mom, do it with me!” So there we are, walking toward the school together, heads up toward the sky sticking our tongues out and laughing.
Sitting in the seminar, when I felt that big, old weight again, like I did when Wil was born, I was both surprised and not surprised. I’ve learned to handle this weight, but it is also not to be ignored. Back when Wil was born, there were many people who supported me, and some close to me who could not accept this diagnosis. It was a great time of growth for me. I had to gather a lot of strength and courage to have conversations that needed to be had, but I didn’t feel I had it in me. It took a lot of time, but I did get there. I read a lot of books, I talked to a lot of my strong friends, and one day, almost spontaneously, though I had been building for this strength for some time, I felt all that strength and motivation well up in me, and I broke down that wall. I had the conversations I needed to have. Not with anger, but with love. With resolve. With passion for a life I believed in. I didn’t know what was on the other side, but at that point I knew staying where I was was not where I wanted to be. I had to go forward. And, as scary as it was, I found it exhilarating! Now looking back, it’s hard for me to believe I didn’t have the strength to do what I did. But that’s what strength is. Doing what we don’t think we can do, but the pain is too great to stay where we are.
The weight that was sitting on me now, descended heavily and immediately, like one of those big cartoon pianos that fall from the second story right on top of the unsuspecting pedestrian. They look up to see it coming, but there is nothing they can do to stop it.
This fear is real, and it is heavy. And, there is no real escaping it. But I don’t have to stay stuck so long under it like I did before. Wil does have Down syndrome, we are going to have challenges, and times are going to get bumpy. But, there is no reason to feel trapped by that like I did so many years before.
I lifted the weight of the piano over my head, and looked around the room. All of the women sitting here, are exactly the women that won’t just sit still and let life happen to them or their children. They are out looking for the resources that exist, how they may access them, or how create them.
I saw not only the strength of the women around me, but the strength of the parents before me. The speaker talked of the organizations created to help our kids. What they provide and also the hoops to jump through to gain access. Yet, as imperfect as some of these organizations may be, they do exist. Someone fought for their existence before me. They broke down a wall so that individuals like Wil can walk right through.
So when the weight of my fears threatened to build during those moments in the seminar, I did not deny them. I acknowledged them. I felt their their reason for being. But I did not allow them to hold me down, but used them as motivation to spur me forward. As energy to kick out another wall that I can look back on, and wonder how I thought it was so hard to knock out in the first place. I gather more energy as I fill myself with gratitude for the parents that kicked down all those walls before me, and paved paths for Wil and his friends. And, those women I knew in the room…so strong, and at the ready for any battle; only the sight of snowflakes falling on our child’s upturned face that will bring us to our knees.
As we left the room, I heard the crunch of scattered, broken piano pieces under our forward-marching feet.