Two Steps Back Is One Step Forward

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.

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5 Things You Need To Know About Individuals With Down Syndrome Before You Spend Time Together

5 Things You Need To Know About Individuals With Down Syndrome Before You Spend Time Together:

1. Brace yourself for the best hug you have ever gotten. Truly.

2. “Appreciating the little things in life” will no longer be a saying. Little things will be pointed out to you and time will stand still for an instant. You will be enveloped in the beauty and simplicity of a moment. What once felt little to you will now become big and the big things you are hurrying after will now reduce their size in importance.

3. Even if you believe you have a lot of time to get ready to go somewhere, still add a 15 to 30-minute buffer on top of that. When you are losing your patience, take a deep breath and refer back to #2.

4. Lest you are lulled into the belief that all of life moves at a relaxed pace, fasten your seat belts! When our friends feel uncomfortable or need a change of pace, without a word, they will zero in on the nearest exit before you have even processed what is happening, and zip out the door in a time that would make Jesse Owens’ head spin. It’s go time!

5. Cruel words and actions hurt. They are not forgotten. And yet, they are bravely forgiven. Grudges are not held, and an infinite supply of love is freely and openly extended.

Keep on rocking those 47 chromosomes! We need your kind of love in this world! 💙💛💙💛

#DownSyndromeAwareness

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Savoring and Surviving

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Last night I was well reminded of the time back when the kids were little…
I brought home 2 leftover Yahoo chocolate milk drink boxes from a meeting. I gave one to Katherine and one to Wil (Elizabeth declined). Elizabeth likes to help me make dinner so we set out to do that. Elizabeth got out a large pot, filled it with water, added a pinch of sea salt and got it to a boil, while I put a frypan on the stove, and put on some chicken sausages. All was under control so I told Elizabeth I was going to run downstairs to the laundry room to switch the wash while she took care of the noodles we had just put in the pot.
When I entered the laundry room I stopped in my tracks. There was spattered Yahoo chocolate milk everywhere. I mean everywhere. It was spattered high up on the cabinets almost to our ceiling (which is 9 feet high). It was spattered across the top of the wash machine and the dryer. It was spattered across the neatly folded clean clothes that now would need to be re-washed. And when I looked down I saw small puddles of Yahoo chocolate milk in the laundry sink. I was mesmerized both by the trajectory of this little drink box as well as it’s quantity. And I immediately knew the culprit. Wil. I could see what Wil had tried to do. He tried to squirt the box empty into the laundry sink and clearly it had gone awry. Actually, awry for me who would be on clean up duty. Wil likely had tons of fun when he realized what this little box could do. I called him downstairs to the laundry room. “What happened, Wil? Did you try to empty your drink in the sink?”
“Humpf,” he replied with shrugged shoulders.
“Wil, come on. It’s ok if you didn’t want it. But you need to ask me if you need help. This is everywhere. Even on the clean clothes. Here’s a cloth, let’s clean this up.”
I wet our washcloths and started wiping everything down. Once the top of the dryer was clean, I grabbed the laundry from the dryer in a heap, threw it on top of the dryer, then pulled all of the wash out and put that in the dryer. Katherine came down to see if we needed help and I asked her to check on Elizabeth to see if she needed help. She ran upstairs, then Wil and I loaded the no-longer-clean folded clothes in the wash machine. What seemed like seconds later, Katherine yelled down the stairs that Elizabeth needed help NOW. I ran up the stairs two at a time, and found the cheese tortellini had over-expanded the pot and Elizabeth was holding a bowl full of half-cooked tortellini she pulled from the pot while other escape artist tortellini slid down the side of the pot and stuck sizzling on the stove top. The chicken sausage I had started was developing a char. I gave the sausage a quick turn, drained the tortellini, and by now Wil had made it up the stairs and pulled out his chair at the kitchen table. He must have grabbed it crookedly, because the maplewood chair had somehow caught an angle and it banged to the ground making a decent-sized scratch in the hardwood floor on it’s descent. Wil not liking big, sudden noises stood there in shock, hands clamped over his ears, tears welling in his eyes.
The tortellini taken care of, the chicken sausage turned, and the chair righted, all three of us instantly went to work on calming Wil because he doesn’t always come back from these loud noise experiences easily. Elizabeth had the magic antidote: she promised she was going to make brownies after dinner and give him the first one. Tears instantly replaced with a big smile, “thanks Lizabefth.”
We all sat down, the girls and I looked at each other, took a deep breath and started laughing. “Phew, now that was a whirlwind! Thanks for all of your help! Do you know, when you guys were little, every day was like this. You three were always going in three different directions. It’s strange. I remember that so much, but I forgot how it really feels. You make life so easy now, you are so independent.” Then we went on to share stories about when they were little.
It’s kind of ironic, now that my kids are older, this time is when I truly savor those earlier days. I look back with a smile on my face at the craziness of it all. Of the cuteness, the sweetness, the pureness. But, the true feel of that whirlwind has faded over time and every once in a while is brought back in moments like tonight. How living in that time, it’s more about survival than it is about savoring. It is a living minute to minute. It is full of unpredictability and constant movement. It’s kind of backwards from how we are told to perceive it. When our kids are little, we hear time and again, “Savor these moments, they go by so fast.” As the twins are only 20 months older than Wil, this whirlwind of activity was my only constant. I enjoyed my kids so much, but savoring that time is just not the right word. It sounds much too zen, too reflective. Heck, if I had any time to sit back and reflect, I would instantly fall asleep. I remember my husband waking me up when I would sit down in the Lazy-boy and immediately fall asleep sitting up!
It is with good intentions that we are told to savor this time because it goes so fast. It really does. But, my goodness, when you are in the middle of it, it’s hard to look past the next minute let alone contemplating the notion of stepping back to savor anything. As time goes on, and the true feeling of the whirlwind starts to fade, and we actually have time to take a step back and observe, savor and soak it all in, it’s good every once in awhile to be reminded of just exactly how that whirlwind felt. So that when I see a fellow mother or father with their little multiple ones trying to hold on for dear life, I won’t wistfully say, Oh savor this moment it goes so fast. Rather, I will give them one heck of a knowing smile and say, “You are doing a fantastic job! Keep it up!”

These Smiles Are For Real

I wanted to look at some Buddy Walk t-shirt ideas so I googled Buddy Walk T-shirt images. Of course I saw multiple pics of individuals with Down syndrome; babies, toddlers, adolescents, teens, adults. Though the age range was large, I could see numerous similarities in mannerisms that I could relate to Wil. I couldn’t quite put my finger on it, and I’m not sure I even want to. I simply enjoyed feeling a connection with these individuals and their families. I cherished this life with Down syndrome even more.


Certainly, there are many unique and individual stories behind these pictures. Though I do not know these families individually, I can guess of the struggles. All of the bumpy places. Every life has bumpy places no matter how many chromosomes you have. But isn’t getting through them what makes the smiles more meaningful? Isn’t getting through them what provides the energy behind an enthusiastic thumbs up? To know we are stronger, better, smarter and hopefully gained more compassion along the way. I don’t know quite why, but many consider the hard places as what’s more “real” in life. Like if we post a happy picture that’s less “real” than the bumpy places. Oh, quite the contrary. My goodness, when the sunshine and rainbows appear, that’s what we need to let shine as bright as we can and not hold back for a single second. Because that is the deep down essence of this life. Isn’t what we all live for is to give love and be loved?


I don’t have to see every bumpy picture to know how real those places are. I already know them. And that is exactly why, when I looked at the photos of the triumphant smiles, the shared loving hugs, and enthusiastic thumbs up I can feel the strength of connection. And that my friends, is fully and deeply real.

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A “brief” moment of gratitude

When Wil was getting dressed the other morning, he let me know he was down to “2 underwears.” I told him I would take care of it. The next morning, he opened his drawer and literally started jumping up and down in excitement. “Mom, mom!! Look! My drawer is full of underwears!”

There is always something in our day to be grateful for. 🙂