Wil woudn’t leave the playground, and it was time to go. Katherine and I reasoned with him, gave him extra time, offered a piggy-back ride, even walked away to let it be his own decision. But alas, there he remained. Seated on the play structure. Grounded. Unmoving. Unwilling.
But it was time to go, darn it. Doesn’t he get that? Doesn’t he know we have a schedule to keep? After 11 years with this kid, I know the answer to those questions. At times like this, there is no schedule. There is only Wil time. And I’m not always sure how to enter Wil time with him. But I can hear the clock in my time ticking. We have places to go, kids to pick up. Specifically at that moment, Elizabeth needed to be picked up. She thoughtfully texted me ahead of time, because her phone She was to text me when she was done helping at the track meet. Instead, I received a text earlier. Her phone was down to the last 3% battery life: “Mom, my phone is down to 3%, so it will probably be dead by the time I need to be picked up. So can you pick me up at the track at 5:40pm?” That was plenty of time when I received the text. “Sure thing!” I responded.
I had given Wil the “leeway time” I figured he would need before picking up Elizabeth. We had a very full day previous to this moment, so I predicted he would need some coaxing when it was time to go. When we have very active days like this one, I always tack on another 15 minutes of time just in case. But this was taking longer. With the time we had left, we were already going to be late to pick up Elizabeth. I texted a friend Elizabeth was helping at the track with in hopes she would get the message. I told Katherine we were going to have to carry Wil off the play ground. He is 86 pounds and was very unwilling, so I needed her help. We carried a very unwilling Wil to the car. It was trying both physically and emotionally on all of us. Once in the car Wil changed gears. As soon as I started the engine, he rolled down the window, let the wind blow in his hair. He started singing like he always does. He seemed fine, but I wasn’t. Was carrying him to the car against his will the right solution? And I brought Katherine into the scenario to help me. When Katherine and Wil butt heads, I ask her to meet Wil at his level. Reason with him. Don’t force him because that just makes him dig his heels in further. But wasn’t that just what I had done? When I couldn’t find a way to meet Wil at his level, then I forced the issue and so he dug his heels, literally, all the way back to the car. These are the times I feel just as stuck as Wil does.
In hindsight, I would have given Wil as much time as he needed to think it through. To give him the space to feel back in control of the situation. And to give myself time to think more creatively. Katherine and I could have walked around the playground. Or sat down and talked. When Wil has homework he does not want to do, I give him time. I give him space. If he gets frustrated, I ask him to go to his room, take a little quiet time, then come back when he is ready. Works every time. Sometimes he takes 5 minutes to himself, sometimes it’s 45 minutes before he emerges from his room. But when he does, he always bursts out of his room saying, “Mom, I’m ready!” And he is. We float through his homework with full smiles. When he gets stuck on a problem, he is open to reasoning. If I rush homework with him, or tell him he has to sit there and do it, all I accomplish is adding on extra hours, along with high levels of frustration on both of our parts.
With Wil, I’ve learned to plan ahead. It just is. It’s how we roll. Most days, when we have a full plate, I know he will get overtired and at some point hit a wall. He’ll either sit unmoving, or will decide to take a sprint to parts unknown. One time, he’d had enough right in the middle of the post office parking lot. That was it, not one more step. Elizabeth offered a piggy-back ride in the middle of the parking lot and thankfully he accepted. His sisters are amazing. They get Wil. They understand him well. They have been through many “walls” before and we just keep in rolling, making adjustments as necessary. It just is. It’s how we roll.
I went to a behavior seminar last week. It was for kids on the autism spectrum, but was also relevant to people with varying special needs. The speaker had a brother with autism, and shared many of her experiences. Though she was older than me, she reminded me of Katherine and Elizabeth. How she would laugh about the things her brother would do, and also how she was patient and very creative in her approaches. Her brother was her brother. The way he did things just was. It’s how they rolled.
This speaker has worked extensively with people with special needs over the years. As she shared multiple helpful experiences, I started to see an underlying theme: Patience and creativity. When a behavior is happening, it’s time to step back and assess. Behaviors always have an underlying reason. People aren’t just defiant to be defiant. There is always a reason. Many times the person exhibiting the behavior may not be able to verbally express it or even process it, but they feel it.
That’s really not news to any of us. We all act the way we do for a reason, whether understood by us or not. But the thing is, this speaker stopped to listen. She stepped back to assess and in so doing was able to get creative in her approaches. It’s one thing to understand that. To observe or hear a story, and then say, “Why of course!” But when you are in the middle of a situation, the decision to actually step back and understand behavior is a toughy. Most especially when people are limited in their verbal skills. We want a quick fix. We want the answer now so we can move on. The speaker gave an example of an adult woman in a group home who was non-verbal. This adult woman suddenly developed a habit of running outside on a seeming whim. If she couldn’t get outside, she would immediately strip off her clothes on the spot. Not understanding her behavior, this woman was restrained. Which of course, made her extremely upset and so they increased restraints. A downward spiral. They said it was for her safety. But no one understood her behavior or tried to understand her behavior. Fortunately, our behavior speaker was called in to assess the situation. Our speaker being of a certain age, immediately saw what was happening. This woman was going through menopause! When she had an onset of a hot flash, she would feel the urgent need to cool herself off! This woman did not have the verbal skills to express her needs, and likely didn’t even know what menopause was. She knew she was instantly unbearably hot and wanted to cool herself off. Instead, she was being restrained from doing so. How incredibly degrading and frustrating!
Sometimes, life moves too fast for me, too. Sometimes, like Wil, I am forced to do more than I feel capable of. Sometimes I feel pulled from the place I feel comfortable in against my will when what I really need is some time to reflect. Time to understand what is happening and feel a sense of grounding. I don’t always know the right thing to do. But I do know one thing: I always want to do better. I always want to know better. And making mistakes is what pushes me in that direction.
It leads me to places like the behavior seminar. Where I can hear stories I can relate to and learn from. To surround myself with proactive people. Strong people. Unrestraining people. The upward spiral way of doing things.
As challenging as it can be, raising a child with special needs really is a magical experience. Raising Wil has stretched me beyond my pre-conceived abilities. I am not wired to be patient. I am wired to be efficient, to get things done. And the latter really helps. But it can also hinder. I need to be stopped here and there to take notice of what is around me. That life is not always about getting from Point A to Point B the fastest way possible. Sometimes to take a step back is to take two steps forward. I don’t want to restrain that fact, or stop that fact simply because at the time I don’t understand it.
There are always more choices than I may realize at the time. Hindsight is 20/20 and all of that. But each time I hit a wall with Wil, I do learn something new. I am forced out of my comfort zone to seek out new choices. New options. I can’t live in judgement of myself but what I can do is learn. What I can do is grow. What I can do is learn new ways to connect. What I can do is share my experiences so someone else finding themselves in a similar situation can also learn, grow, and help lift another up when they have hit their own wall. There is no end to learning. There is no endpoint to expansion and growth. When I think about it, the woman in the group home who was going through menopause is beautifully metaphoric. In the way she threw open the door and ran outside to freedom leaving those who thought they knew all the answers dumbfounded, while one woman who stood back and observed, found herself nodding in great understanding.
Stories of Wil, my son, who has Down syndrome 