Down syndrome

Slippery Rocks Ahead!

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“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.

I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.

The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.

When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.

“Hmm, sounds like a teenager to me,” Matt said.

That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”

“Actually Wil, it’s Thursday.” I replied.

“No, it’s Friday, Friday, Friday!” He continued singing.

“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”

On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.

“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”

“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.

Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!

When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.

When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.

At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.

As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.

I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.

The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.

The Morning Wash

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This morning was a full-on 30 minute morning to get Wil out of bed and into the kitchen for breakfast. This is how it went:

“Wil, time to get up.”

“Hi Mom.”

“Good morning, Wil.”

“Good night, Mom.” He giggled and pulled the covers over his head.

“No, it’s good morning Wil.” I said as I pulled the covers back down.

“Good night, Mom.” He giggled and pulled the covers back over his head.

“Good morning, Wil.” I pulled the covers down. I gave him a hug while I lifted him up. “Do you want me to help you get dressed?”

“No, I do it.”

“Ok, it’s time to get dressed then. I’ll go make you breakfast.”

“Ok, Mom.” Then he plopped back down and pulled the covers over his head.

“Dude, you have to get up now. Chop chop!” I clapped my hands and he laughed.

“Oh, Mom. You are silly.” I did fast little claps near his face. He grabbed my hands, pulled me down and gave me a hug.

“You are sillier,” I said, hugging him back. I lifted him up to a seated position. “Ok, let’s go. So you don’t have a rushed breakfast.”

“Ok, Mom.”

“Here, I’ll get your underwear out for you, then you pick out your pants and shirt.” I set his underwear down on the bed next to him then headed to the doorway. I turned around and he was sitting there watching me. I knew he would lay right back down when I left.

“Dude, please, let’s go. You won’t have time for breakfast if you keep up this pace.”

“Ok, ok, ok.” He said. Convinced he would truly get up this time, I left the room and came back a few minutes later to check on him.

“Look, mom, I put my underwear on.” Wil was standing in the middle of his room, his pajama bottoms and top still on, but he had his fresh pair of underwear pulled up over his pajama bottoms. I knew laughing would slow things down even more but I couldn’t help it. I started cracking up then he started cracking up. Wil then danced around the room in his over-underwear.

“Wil, you are just too cute. That is funny. Ok, I’m sorry to end the party, but we are down to the wire here. Pretty please, let’s get dressed. With your underwear under your clothes.”

He danced around some more, then said, “Ok, Mom, go.” That meant he wanted privacy to get dressed. Progress.

Soon after, he walked into the kitchen. He had on pants and hoodie, with his underwear under. He sat down, and got right to business eating his breakfast. No need for convincing or coaxing there.

Some minutes are under, some are over, but it all evens out in the wash.

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Time

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I sat at the kitchen table, my chair turned slightly outward, toward the kitchen sink, where Matt stood, washing dishes. Miraculously, Katherine, Elizabeth and Wil were all in one of the bedrooms playing together. This is the time, I thought.

“Matt, what is it that you need?” I asked him. He stopped, holding a plate, the water running over it. He looked at me, then looked back to the plate, the water continuing to run down its surface.

I said to myself, “shut up shut up shut up. Let him think. Don’t interrupt his train of thoughts with words.” The exaggerated pause went on, and I willed myself to stay quiet. I knew the wheels were turning in his head. We had been married long enough for me to know how his mind worked.

When I was growing up, if you paused what you were saying, the person you were talking to assumed you were done with that thought, and filled the space with their words. If you weren’t done with your thought, you’d circle it back around to it, if you felt it important enough to do so. With Matt, there are a lot of pauses. He thinks through his words carefully–a phrase, a thought, and another phrase. When Matt and I were first married I didn’t understand his pauses. I assumed he was done with his thought and it was my turn to respond, and so I did. I soon learned that when I did that, Matt would not circle back and I never fully heard his full view on a subject. So now, thus understanding over the years, I reminded myself to remain quiet. I really, really wanted to hear his thoughts on what I was asking.
Though, at that the moment, as much as I wanted to hear him talk, I wasn’t exactly appreciating waiting. I was tired of waiting. I had moved on and I wanted him to move on too. But he was on one side and I was on another.

The pause went on, the water still running. I couldn’t take it anymore. “Matt?”

He looked at me. “Time,” he said.

Katherine and Elizabeth were born in June 2005 and Wil followed about 20 months later in February 2007. In the 20-month span before Wil was born, I carefully laid out Katherine and Elizabeth’s first words in their baby books. I delicately inserted their first locks of cut hair with details on their experience. I wrote out their sleeping habits, what their favorite toys were, how I enjoyed the fact that their astrological sign was also that of twins (Gemini) and what was happening in the world at large—who the president was (George double-ya), the current weather, the fashion and popular songs of the time. A detail was hardly missed—I filled in every pause. Today, Katherine and Elizabeth circle back to read the memories of their early lives.

Though those 20 months spanned an eventful time, the 72 hours after Wil’s birth threatened to hang above my head like a stagnant cloud. How could I wait the eternity of 3 days to confirm a diagnosis?

I was told it would take 72 hours for a Genetics test to confirm the suspicions that Wil had Down syndrome. This 3-day pause in time was more than I could bear. I pleaded for an answer. I desperately needed to move on and know what our situation was. The 72-hour cloud hung heavy above me–the answer was on one side of it, and I was on the other. It was a pause I could not wait out.

Finally, after much pleading on my part, one doctor confirmed that Wil had all the signs of having Down syndrome. I was given folders about Down syndrome the very afternoon after Wil’s birth. A social worker also came to visit me that very afternoon. Family members came in and cried. Though the cloud had shifted forward, it still hung heavy in front of me, blocking my view of the future. In fact, I could hardly see past today. But at least I had a definition to look at.

By the time the 72 hours came and we received official confirmation, it was simply a formality. However, I did learn that Wil had Trisomy 21– the most common form of Down syndrome. In a strange way, even though I was struggling with the diagnosis, learning of the commonality of Wil’s type of Down syndrome that day was a stroke of relief in a sea of bewilderment. Though I felt as if I was standing on an unknown island at the time, now, with this knowledge of Trisomy 21, I discovered this island was well populated. I may have been lost, but I no longer felt alone.

I tried to nurse Wil, but with his low muscle tone, he needed lots of time and attention to get the nutrition he needed. With Katherine and Elizabeth not even 2-years-old yet, I didn’t have the luxury of time to sit still, let alone to take the hours needed to help Wil nurse properly. Wil’s weight was dropping as he wasn’t getting the nutrition he needed. He would only accept bottles with the disposable nipples from the hospital. Would not nursing Wil set him back? He was already born with cognitive and physical delays. His immune system was already compromised. I asked his pediatrician how I would be setting him back if I changed to bottles and formula (A kind nurse, on explaining my situation on Wil only accepting the hospital bottles, gave me a large garbage bag full of individually packaged disposable nipples). Of course, the pediatrician said that nursing was best, but so was getting Wil the nutrition he needed. He asked me to hang on for 6 weeks if I could. That’s what I did then went to bottles with the disposable nipples and formula. I knew exactly the nutrition Wil had, and I didn’t have to spend hours trying to nurse him and keep Katherine and Elizabeth occupied at the same time. Wil was gaining weight and growing. That six-weeks of time I nursed Wil was both an eternity of patience and a blur of activity. When it was over, and I changed him to 100% bottles and formula, I didn’t realize how stressed I had been over that decision. I let out a deep breath and reveled in the pause in time, then moved on fully from one side to the other.

I began to grow a village around me. The first was Early On—an early intervention program for children birth to three years of age. I met the therapists who came to our home and worked with Wil–speech, occupational and physical therapists. These therapists showed me exercises to do with Wil. They also included Katherine and Elizabeth in these exercises. Katherine and Elizabeth were very intrigued with their brother’s therapies and liked to help out. The therapists in those early days gave me hope, even if they couldn’t give me concrete answers. I asked the physical therapist if Wil would walk. She answered that he would, but could not say when. Maybe he would be 2 years old, maybe he would be five. I sat there again, the stagnant cloud heavy above me. I was on one side of that question, the answer on the other. Though this time, there was no test that would give me a black and white answer. Time would tell. I was desperate to fill the pause. I willed myself to be patient. Finally, I could take no more. I asked the therapist again, in different ways. She could give me no concrete answer, but what she did is tell me this: “See how Wil walks on a balance beam?” He was assisted, she holding his hand on one side, me holding his hand on the other. “See how he can put one foot in front of the other, even though he’s not able to walk on his own yet?”

“Yes,” I responded.

“Well, he’s not supposed to be able to do that. But he is. Sometimes kids are expected to be able to do A and B before they can do C. But Wil, well, he does A then C. Eventually he will circle back to B. That’s just how he does things.”

So I learned to be patient in the pauses. To not fill in the spaces, but wait for Wil to do that on his own, in his own time. I delighted in celebrating that he achieved the “C” activity, even if we would have to circle back to achieve the “B” activity. Progress was progress, no matter how many times we had to circle back to move forward.

A lot of time has passed since those early years. Wil just had his 13th birthday. Wil still puts “C” before “B.” Some days make sense and some days we can’t make sense out of them. The days we are deciphering a certain behavior he is communicating can be an eternity, while the breakthrough on the other side is a clear celebration. It’s easy to step into a situation, point fingers and say, she should have done this, or he could have done that. But though what is deemed as “right” is not always what is right for our situation. That is exactly why I love my special island of Trisomy 21 families. We know what works today has a really good chance of not working tomorrow. Progress is progress, no many how many deep breaths you have to let out, or how many times you have to circle back to go forward.

This journey takes willing yourself to shut up to open the door to hear where someone else is coming from. No matter how long it takes. It also takes pleading your case so your view is heard. This journey takes filling in the pauses with all the proactive energy you have. It also takes patience and allowing time to unfold in its own time. This journey is about jumping ahead. It also is about circling back. This journey is about letting go of guilt when what is right is not always right for you. It’s also about forging forward for what is right, and stepping back when you need to. This journey is about celebrating one step at a time, as jagged and zig-zaggy as the road may be. I can’t promise that this journey will be pretty. But I can promise that this journey will be worth every second of your time.

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Exhale

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I emerged from the ladies’ locker room into the pool area, and as always, held my breath. I made a quick scan of the pool. I exhaled in relief to see an open lane. I wouldn’t have to share. Over 2 yards of width and 25 yards of length lined off to my very own self. A swimmer’s heaven. I claimed my lane by setting down my gear, took a seat on the edge of the pool, and dangled my legs in the water. As I pulled on my cap and goggles, I saw a man walk in–I may have to share now.

He walked by me, smiled and said, “I like your suit.” That gave me a twinge of guilt over my selfishness.

“Thank you,” I said. He moved on and walked up to the lifeguard in his tall chair. He struck up a conversation with the lifeguard, who seemed to already know him. Clearly, this man was a regular here.

My times at the pool, while consistent in the number of days, are erratic in the time of day. Sometimes it’s the early afternoon, sometimes the late afternoon or even evening. My days fluctuate with my work and kids’ schedules. It was about 9AM and I had not yet been to the pool at this time on this day of the week.

The man was still chatting it up with the lifeguard when I hopped in. I didn’t know if he was just talking until a lane opened up, or this was the natural length of their conversation each time he visited the pool. Either way, it didn’t seem he’d approach me soon to share. I hopped in, planted both feet on the wall and pushed off. The conversation above me instantly muted and my view became clear water edged by rounded white concrete walls. A dark blue tiled line imbedded in the bottom of the pool guided my way. The familiar tingle of chlorinated water hit the bridge of my nose and I stretched into the rhythm of the swim.

About 5 minutes into my swim, I saw the talkative man’s legs enter the water. Someone must have gotten out and he took over their lane at the furthest edge of the pool. I could see him start to swim 3 lanes over from mine. Now all the lanes were full. We swimmers were lined up, one by one, with our own thoughts on our own course. Some side stroking, some easily back stroking, and some knocking out intervals.

It wasn’t much later while taking a breath I saw multiple feet making their way across the pool deck. When I stopped at the end of my interval, the pool area echoed with noise. Men and women, it appeared mainly in their twenties, were ready to enter the pool. Some jumped into the open area, about 3 lanes wide, while others walked tentatively with floatation devices down the ramp. I heard a woman, who must have been the teacher in the group say, “Ok <she rattled off a few names>, it looks like you will have to share a lane.”

One woman, who had Down syndrome, appeared to be upset by the thought of sharing a lane. She seemed very serious about her swimming time. The 3 men she was with that the teacher also addressed about sharing didn’t seem to mind. When a lane opened up, the 3 men bounded in and started either swimming, or bouncing off the bottom of the pool. The woman waited, scanning the pool, for a lane to open up to herself.

The talkative man who had taken the end lane, also saw what was happening. He said to the woman, “You can swim with me if you want. I’ll take one side, and you take the other. Which side do you want?” She seemed happy enough with this situation, but I could tell, like I did when I entered that pool area, she wanted her own 2 yards by 25 yards to herself.

The woman in the lane directly next to mine came to a stop. We both looked at each other and knew the situation.

“I think we need to share,” she said. Her lane was in the open area where the rest of the group was entering. The big group needed that space.

“Yep,” I said, “Come on over.”

She ducked under the lane line and popped up in my lane and said, “Do you want to rotate, or stay on one side?”

“How about I take this side, you take that side?” I proposed.

“Sounds good to me. Thanks.” She replied. And we went off on our way.

As we made our way up and down the pool, my quiet view had changed. As I made my way up and down the pool, I now watched out to make sure I didn’t’ get kicked in the gut when my lane partner and the 3 young men in the lane next to me had their frog kicks going on. I breathed a sigh of relief each time I passed and they were doing a flutter kick. The rounded white concrete walls now were fanned with legs treading water or jumping up and down in the shallower end. I saw, from under water, a trepid fellow with a floatation device around his waist inching his way up and down the length of the pool hugging the edge.

Ten minutes hadn’t gone by when I saw the talkative man exit the pool. He said to the young woman, “It’s all yours now. Have a great swim!” He walked up to the lifeguard and had another conversation, then left.

I don’t know if he surrendered his lane out of kindness, or if he was tired of looking out for an errant frog kick, or because he had plenty of time on his hands and a shorter swim today didn’t matter much in the grand scheme of things–that giving the woman the lane to herself was more important. Whatever his reasons, he left a feeling of goodwill in his wake.

After about another 20 minutes, the group exited the pool. I was swimming so I didn’t immediately see where they dispersed to. I just noticed that the rounded white concrete walls were back to their quiet state.

When I finished my current interval I took a look around. I saw two lanes were now open. I ducked under the lane line then slid my gear over. Then got right back to swimming. I saw the woman I shared the lane with, now in the lane next to me, come to a stop. So I stopped. I felt rude just switching without saying anything.

“I wondered where you disappeared to,” she said.

“Haha, yes, I saw a lane open up so I took it. I wanted to let you know.”

“Ok, well thank you for sharing with me.” She said.

“Of course. Have a great rest of your swim.” I replied.

I then saw about 10 young men from the group of swimmers exit the hot tub and walk together to the men’s locker room. I felt a pang of sadness.

I pushed off the wall, got back to swimming, and wondered at my sadness. They were all conversational, having a good time, and clearly knew one another very well. And that was just it. That was the reason for my sadness. They were together, but would they be, if they did not have the differing needs they did?

If this group of men was more accepted and integrated into our current society, would they be friends? My guess is some would, but some would not. They were brought together as they all fall under the category of young adults with special needs, even though they are completely their own individuals.

Don’t get me wrong, I’m extremely thankful this program for young adults with varying needs exists. This program exists to integrate these young adults into society. It’s the “typical” society that struggles to integrate these young adults. That is the source of my sadness. They are not looked upon as the individuals they are. In our current society, It takes too much patience on our part to understand their needs and we miss out on their great value and contribution to society. So these individuals are brought together through no true choice of their own. They are brought together under a category.

The current society does not want to understand someone categorized as different than us. We don’t want to work side by side unless we find ourselves face to face in this position.

What happens when we are face to face? Patience we never thought we had happens. Compassion deeper than we thought possible happens. Understanding beyond what we even understand ourselves happens.

Raising a child with special needs is no walk in the park. On any given morning, it can take 10 minutes on a good day, to over 30 minutes on a more challenging day, to wake Wil and get him up and and out of bed. You learn to anticipate moments. What happens when. What happened the night before that may have made him upset. What was happening that day that he may be anticipating. Or was it just a plain hard day we all have sometimes.

I can’t force Wil. I can’t control Wil. But I can redirect and direct Wil to new behaviors. His behavior is his communication, as he is not yet able to communicate to me fully his emotions and the details of his day. He was having a particularly hard time last week. His teachers and I were trying our best to understand the triggers. On one day, his teacher texted me that Wil getting on the bus that day did not look good. He was refusing to work all afternoon. A buildup of this behavior had me upset. I was ready to lay down some strict rules. But again, you can’t force Wil. You can’t control Wil. Whatever you enforce will show up in a different behavior. You need to work to solve the puzzle of what he’s trying to communicate.

When I arrived at school to pick him up, his resource room teacher had good news. Together, they made a break through. She asked Wil what was he going to do? And he yelled out, “Talk!” and started to smile. She repeated her question and he again yelled out, “Talk!”

I let out a deep breath I hadn’t even realized I was holding in. My eyes welled with tears. We have not cracked the proverbial code. But she found a way to get through that day. And that will lead to a better tomorrow. We will build on that momentum. Wil made another advancement in his communication. Last week he may have not been ready for that chant, but his resource room met him where he was at the right time. She did that with patience, with understanding and with compassion. She did that because they come together every day face to face.

With Wil I need to slow down no matter what. I need to go at his pace. I need to work at understanding what his behaviors are telling me. I give him his hugs, as many as he needs, and we go on from there. I never quite now where there is, but we figure it out as we go. We are comrades. We have been brought together and we are going to stick together and integrate our ways to make this work. Ways that work for Wil and the individual that he is.

This life raising a child with special needs is both complicated and also the simplest thing in the world. Our kids, though they are lumped together in a category, are very much their own individuals. The talkative man at the pool understood that. Whatever his motives, he wasn’t giving charity, he was giving a lane to another woman who was intent and serious about her swimming. We all want to cherish the rounded white walls of the pool whether we scale the edges or knock out intervals—and every one of us is trying to avoid kicks in the gut. We just express it in different ways. There is no true code to crack. It’s simply a matter of time and patience and trying over and again—and that’s also exactly what’s complicated. But once you dive in face to face, you will always be thankful you did. Exhale.

Crystal Mountain pool

Step One is One Step

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After coaching an early morning class, I was talking to one of the members and asked her what her occupation was. She told me she was a social worker. I never knew much about social workers until Wil was born.

“You do good work,” I said, “but my guess is a lot of people don’t see it that way. They probably don’t want to see you at all.” A social worker came into my hospital room the afternoon after Wil was born and she was the last person I wanted to see.

“Yes, I can walk into some very challenging situations.” She told me a little about her work, of course keeping confidentiality.

When people are struggling, they typically don’t appreciate someone who has only learned of their situation via a file, to walk in uninvited and try to fix them or their situation. “Don’t walk in and say every little thing is going to be ok.” “Don’t try to fix me.” “I can hardly see past the next minute let alone think about how to overturn this entire situation for the better.” These were at least my thoughts when I first met the social worker that walked into my room. It’s not that I didn’t believe things would get better or that I didn’t want help. Its more that I couldn’t think that big at the time. I couldn’t think out that far in the future. When you are struggling, it’s hard to see past the fog you are in in that particular moment. For someone to walk into your story at that point and say, “You got this!” “You are awesome!” “I believe in you!” while kind, is hollow. It’s much too vague and has no real meaning attached to it. It doesn’t connect specifically with your situation.

That’s why I’m not particularly fond of the posts on social media proclaiming, “You are awesome!” “I believe in you!” “You can do it!” While there is nothing wrong with a positive message, and it’s certainly worlds above low-dwelling negativity, the words, while positive, are empty. They are much too broad to connect with any substantial meaning. If the social worker walked into my hospital room and said, “You are awesome! I believe in you! You can do it!” I would have looked at her with wide eyes, like who do you think you are? Will you get out now please? Don’t puff me up with your empty positivity. It gives me indigestion. I couldn’t see past the next minute, let alone see how awesome my future was and that I could do it! Do what exactly? What does that mean? How about you tell me how I can get through the next minute because I can’t see beyond this fog. If she said, today you will shower and that’s all you have to think about, I would have jumped out of bed and given her the biggest hug ever. I was too overwhelmed to be awesome. I was too overwhelmed to be believed in. I was too overwhelmed to do it! whatever that was. But to be given one specific action to take just one step forward would validate where I was. It would make a connection with me—we could meet at a place of understanding. Eventually I could find my way to awesome. Eventually I could do it! (whatever that is). But right now, that was much, much too vague. Much too broad. Much too rah rah rah. When you are living in a fog of overwhelm, you need one specific direction to be pointed in. And just one. That is enough.

The social worker that walked into my hospital room, though, broke my preconceived notions. She did not tell me I was awesome. She did not tell me I could do it! She didn’t try to fix me or tell me about some future I was incapable of seeing at the moment. She was much smarter than that. She didn’t say anything. Instead, she held up a folder. A royal blue folder. You could only see the royal blue on the periphery of the folder, because the majority of its surface was overcome by a very close-up picture of a blond girl with Down syndrome.

“Isn’t she beautiful?” The social worker asked me.

I have written in detail about this moment on a number of occasions because it was so impactful to me. This occurred over 12 years ago, and when I recounted this story to the member at the gym that morning, I was surprised by the tears that welled in my eyes so many years later. Impactful moments do not lose their emotion easily.

No one told me my baby was beautiful the morning when he was born. Rather, it was a flurry of activity. He was born “floppy.” Those were the first words after, “It’s a boy!” Elation to confusion in a matter of seconds. What does floppy mean, I asked. I was told it means low muscle tone. And low muscle tone usually means Down syndrome. And yes, look at his short stubby fingers, and the separation in his toes, and the small nasal passages. And these are the words and the conversations that happened seconds after Wil was born.

Tears appeared in visitor’s eyes. Consoling words said. But by afternoon, when I lay alone in the hospital bed while Wil was being examined, the words I most needed to hear came from the person I least wanted to see. The social worker who walked, uninvited by me, into my room. My preconceived notions of her purpose there were shattered. Thank goodness. She was the first person who helped me see past the moment I was in. The fog that surrounded me lit around the periphery. She gifted me one forward step.

After I brought Wil home and we got settled into our first months, I began to seek out support groups. I went to a number of meetings with various different groups. All of the support groups did validate the pain of the initial shock. They all knew the fog I was walking in. However, some stayed there. They told their sad stories, and everyone listened. But what was missing was how to get out of that story. I didn’t want empty promises of positivity. But I also didn’t want to stay where I was. I walked out the door of those groups, thanked them for their time, and never went back.

A few years ago, Matt and I went to marriage counseling. On our first visit, when the counselor was navigating our situation, she asked me if I felt to blame for birthing a child with Down syndrome. I was flabbergasted. That never once crossed my mind. Down syndrome is random, and in any case, what good is blame to do? I had learned over the years, that I was the center of my story. That no matter what anyone did to me, I was still the center. That I had the choice to make a decision to make my life better or wallow in pain. She ended up being a very helpful counselor, but her question always stuck with me. It was a reminder to never get stuck in useless blame. She gifted me one forward step.

The reason Matt and I went to marriage counseling is because we came to acceptance of Wil’s Down syndrome at a different rate. No one person comes to acceptance in the same way at the same time. Acceptance is a journey of experiences. A journey that is helpful to walk along with others, but you also must do your own work. Matt and I had our own separate work to do so that we could come together in acceptance. We are each different people with different backstories. We work well together, but we often see and approach things in different ways. We needed help in bringing our acceptance together for the sake of our marriage, for the sake of Wil, and for the sake of Katherine and Elizabeth. We are their role models in how to value acceptance in differences. It’s not something that can be answered with empty positive promises. It’s not a big, blanket you can do it! type of thing. It’s validating each other’s concerns. Some days it’s a high-five and other days it’s a kick in the pants. It’s a one step at a time kind of process.

In the early days after Wil’s birth, many helpful family members and friends gave me phone numbers of acquaintences who had a child with Down syndrome. “Here, call them!” they said. The thought behind these passed on phone numbers was out of kindness. And the meaning behind these passed on phone numbers was out of wanting to help. And yet, here you are feeling overly emotional, and there is so much information being thrown at you at once you don’t even know where to start. Calling a complete stranger can feel absolutely monumental at the moment. Today, I now get asked if I can talk to a mother who just birthed a child with Down syndrome. I love nothing more than to be approached to talk to their friend or family member. I too want to help and be of support. But I remember those early days well. I always accept that my contact information be passed on. But I also add,” let them know they can email me or text if that’s easier. It’s never too early or too late to reach out to me. Sometimes one phone call can feel absolutely overwhelming. I’m here when they are ready.” One step at a time.

Sometimes making one single phone call to a stranger is all you have in you. One step. Sometimes taking a shower that day is downright heroic. One step. Sometimes working up the courage to approach your spouse about the accruing months of difference in acceptance is the most monumental thing you can do. One step.

You are awesome! You can do it! is too big, broad, and vague when life already feels that way. When you can’t see further than today, committing to one, specific step is the bravest thing you can do. One step. One step. One step. Is that royal blue on the periphery of the fog? One step. One step. One step. More colors are coming into view. One step. One step. One step. I can see the larger picture now. It is a different one than I expected. One step. One step. One step. Would you look at that! Now that I’ve stepped up, so I may now see clearly in close-up view, I must say, the beauty is spectacular.

Wil Calendar 2008 003

When She Watches Him Play

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When she watches him play, she sees not only him, but the distance they have covered together. The places they have been, the people they have met–and those yet to come. Willing the first forward steps–halting, unfamiliar. Then, with time, more fluid. Momentum building. Lessons learned. Villages created. Paths made, step-by-step-by-step. When she watches him play, she takes time to appreciate the sunshine on her shoulders. When the clouds fade back in, she knows they will cover the distance into the sunshine together again.

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Happy is as Happy Does

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I wasn’t feeling very well yesterday. Wil had just gotten over the flu, and I believe a lesser degree of his illness hit my system yesterday. Other than going to work in the morning, and taking Katherine and Elizabeth on a few errands, I laid low and got as much sleep as I could. I decided to sleep in this morning, and Matt had long left before I woke up.

I could smell the coffee in the kitchen when I woke up. It smelled good, so that was a good sign. I could hardly drink any yesterday with the nausea.

It was still dark in our house, as I padded from my bedroom toward the kitchen. Katherine, Elizabeth and Wil were still sleeping. I walked by Woody, curled up in his bed on the living room floor. He didn’t lift his head, but his tail, extending the outskirts of his round bed, gently and rhythmically tapped the hardwood floor. I bent down and gave him a pet.

I made my way into the kitchen, and poured myself a cup of coffee, then turned the desk light on just above the Lazy boy chair. I nestled in the chair with a book. My New Year’s resolution has been to stay off of any media first thing in the morning and read something that will improve my life. Twenty days in, just one more day to cement the habit.

Soon I heard Wil rustling in his bed. He got up and must have seen the desk light in the living room. He walked toward the doorway in his room, and leaned to peer out of it. As soon as he saw me, he quickly stood back upright and shut his door. Privacy has been a big deal lately.

A few minutes later, he emerged fully dressed in a button-up collared shirt and pants.

“Going somewhere special today, Wil?” I asked.

“Hi, Mom.”

“Hi, Buddy.”

He walked over and climbed up in the chair with me.

“You are squishing me, Mom.”

“Hey, I was here first, you stinker. I think it’s you that is squishing me.”

“Ohhh, Mom. You are being silly.”

Hearing his string of words must be how an elementary music teacher feels when the choir comes together in harmony. Hours of practice, working for the notes to come together–to click. Wil used to say “you be silly Mom.” Now, the combination of “You are being silly” strung together in perfect harmony to this mother’s ears.

“Breakfast now, Mom.”

“Ok, let’s have your pill first.”

Wil takes a thyroid pill every morning in a spoonful of peanut butter. 

He has since he was six months old. He first took his pill in applesauce. Then at some point, he decided peanut butter was a better choice.

“Do you want to get out the peanut butter this morning, or me?” I asked him. Along with privacy, his independence was flourishing.

“I get the peanut butter.”

After I scooped up peanut butter on his spoon, and sunk the pill into it, I held it up to his mouth. His independence may be growing, but with his pill he still loves the game of “open the tunnel.”

He took the spoon, and I said open the tunnel, and he swallowed down his pill.

“Mom, guess what. I’m a choo-choo train!” And he started taking straight-legged, tiny steps around the kitchen island. His arms were bent at 90 degrees, making short, choppy swings.

“Mom, you do it with me!” I fell in straight-legged, tiny steps behind Wil and we choo-chooed around the kitchen island.

Once we made it full circle he laughed then said, “Ok, done now.”

He helped me make his breakfast sandwiches. Then he grabbed his plate and walked downstairs to watch Sofia the First on Netflix. I don’t know why, but he only watches that show while he eats. When he’s done eating, he’s done watching and moves on to something else to play with. I went back to reading in the Lazy Boy.

When Wil came upstairs after eating his breakfast, the sun was rising and warm on the window in the living room. He leaned his back up against the glass and said, “Ahhhh warm. It’s a beautiful day, Mom.”

“Yes, it is. Elizabeth has basketball practice this morning, but when she gets back, let’s go outside.”

“Ok, Mom.”

Wil walked off to his room, and put his favorite Luke Bryan CD in his CD player. He started singing at the top of his lungs. I started singing with him.

“No, Mom! Just me this time!” (I again heard the harmony with the addition of “this time” when he used to say, “Just me!” )

“Oh, geez, fine whatever. You never let me have any fun.”

“Oh, Mom, you are being silly.”

I gave him a hug and went back to my book. He restarted the song because clearly I messed up his groove. But I still belted out the choir with him from my chair in the living room because I just couldn’t help myself.

Yesterday, I did not feel well, and you never appreciate feeling good more than when you don’t. I was also living up to my resolution, and well on my way to forming a habit. My dog greeted me with the whap of his tail to start the day, and my son and I had already choo-chooed around the kitchen. When Katherine and Elizabeth woke up, I would surely annoy them with my great enthusiasm for the day (it’s so fun to annoy teenagers).

I don’t believe happiness is this big, elusive thing that we wait for to come to us. I don’t believe happiness is merely positive thinking. Happiness is positively doing. Happiness is positively seeking. Happiness is found and taken in lots of small doses that add up. Happiness is choo-chooing around the island rather than grumbling over a daily pill. Happiness is taking note of the sun through the window, leaning into its warmth and soaking it in. Happiness is hearing a harmony in a string of words. Happiness is singing at the top of your lungs because your son’s joy is downright contagious. Happiness doesn’t find us, we find it – in what we do, see, say, sing, and feel.

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