Slippery Rocks Ahead!

20952965_10214159855691754_5527280911352524737_n

“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

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.

IMG_5896

Time

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.

IMG_8172

Exhale

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

A Question of When

When. That was my favorite question in the beginning. Even if it is not always specifically answerable, the question of when held a note of hope. When promises it will happen, it is only the timeline that is unclear.

On one occasion I asked the question, Will he? I was met with a long pause. Will, like when, is also not specifically answerable. But, unlike the question of when, will promises no hope. The question of will hangs on the edge of a cliff, it is random, free falling. To start with, there are already too many unanswered questions. Even the slightest flash of light, a word of hope, is strength to step forward to, even if blindly at first.

There may be no such thing as a bad question. But there is such a thing as better questions. I learned that quickly. When you are living in a place of question marks, don’t ask for more question marks. Ask questions that have a hint of hope. You don’t have to see the light, only to know that it is there. That there is a chance. That there is an opportunity. That there is something to step toward to. That is enough.

I didn’t know if Wil would talk. Nobody knew. At first I asked will he talk. No one can say, was the answer. Then I quickly learned to rephrase that as When. No one could answer either, but the latter moved us in a forward direction. When is progressive. When looks ahead. Will just wonders.

Wil’s first words were a thrill. Like any baby, he babbled. Like any mother, I heard decipherable words in his babble. The question was, when would two words come? Two words were much greater than one. Two words meant comprehension. Two words meant that three words would come. Three words meant that sentences would come. Three words meant that he could communicate with others. Three words meant four and five word sentences to come. Four and five words meant a complete sentence. Complete sentences meant he could make conversation. Making conversation meant making friends. Making friends meant the ability to have a social life. Having a social life meant having an enriching life. Having an enriching and full life meant the ability to have a job and succeed in adulthood. Not if, but when. Hope. Forward progress.

“Goldfish, Mom.” Not just “Goldfish” but “Goldfish, Mom.” Then, “Goldfish, Mom,” expanded to “I want Goldfish, Mom.” I couldn’t wait to share with Matt, “Wil said, I WANT Goldfish. Not just Goldfish, but I WANT Goldfish.” The flash of light was so bright I could hardly see. Not if, but when. Hope. Forward progress.

Soon, “Light” turned into “Turn off the light.” “Go to the store” turned into “I go to the store” and then into “I am going to the store.”

Wil talks in complete sentences now, but I continue to thrill at the formation of any new addition of a word. I have new questions of whens now, but the present whens continue to hold their hope, their strength and their promise of forward progress. Our first questions of when are our building blocks for the promise of new hopes and dreams.

Wil looked up at the sunset and pointed, “Mom, look! The sunset is beautiful.”

“Yes it is, Wil.” Almost as beautiful as your words used to show it to me. I will never forget to be thankful for those words, because I remember when.

Beautiful Wil

Overwhelmed: Discovering a New Landscape with Down Syndrome

We walked down the hallway of the church, where the meeting was being held. Matt held the baby carrier, swaying slightly with the gait of his walk. It was somewhat dim in the hallway, Matt and my footfalls echoing off the walls. It was evening and the congregation had long returned home from the morning’s service. Though this was the first time we had set foot inside this church, I imagined the vibration of the organ’s music under my feet, the choir in white robes—a bright satin sash of solid color draped diagonally across their chests. White candles being lit, the rise of the preacher behind the pulpit, singing along heartily with his choir–-his flock forgiving his tone deafness for his heart for his Lord.

The sound of voices ahead broke the reverie of the imaginary church service in my mind. The mind is a master of distraction. For that brief moment of choir-filled distraction, I was thankful. My mind had been a swirl of unanswered questions since our son was born just over a month ago. I felt I was living in some kind of surreal dream. Thoughts swirling like Picasso clouds above my head. A cloud is a cloud, and yet, different.

Matt and I followed the sound of voices and found ourselves in a very typical church classroom. Spacious, rectangular, utilitarian. An oblong table had been constructed with two or three long tables pushed next to each other on each side of the room, with one long table connecting the ends of both sides. The tables were lined with chairs. No one was sitting. Women stood around the outskirts of the table, and a few men (I was relieved to see for Matt). The women, and men, were clustered in small groups of four or five. But they didn’t stay in their groups. They would mingle and move around from group to group. There was a sense of ease about them—they all knew one another.

To the far right of the room was an open area. About ten children ran around laughing and playing. Tears started streaming down my face. I couldn’t even place emotions to what I was feeling, it was all jumbled up inside of me. If I had to scoop it all up in my arms and label it, I’d call it “overwhelm.” I was “overwhelmed.”

There were a few adults in this area too, chatting with one another, playing with the kids, or redirecting a child from taking off to a door. It all seemed so normal, but it wasn’t.

“Hi, have we met before?” A woman was standing in front of me.

“Oh! Um, I’m sorry, I just…um, we are the Taylors. I’m Christie. This is my husband, Matt, and um, this is our little guy, Wil. He’s just over a month old now. We have twin girls too. They are home with my mother-in-law right now.”

“Very nice to meet you, I’m so glad you came,” she said, and put her arm on my shoulder. “Let me introduce you to some parents.” When things don’t feel normal inside, the simplest normal responses are breathed in deep like the fresh air they are.

I don’t remember all of the people Matt and I met, but we met almost everyone in that room. The common theme, over and over was, “yes, this is a challenging journey, but a very joyful and gratifying one. Though you may not see it now, you will. I promise, I promise.”

I didn’t see as far into the journey as they did, but their promises were my beacon. Though I didn’t grasp the full meaning of their statements, I could now see beyond the blur surreal clouds I was living in, heavy with question marks.

Soon, the meeting began and we all sat down in one of the chairs that lined the oblong table. The majority of the meeting was about learning styles for our kids. Before Wil had even reached 2 months old, I discovered that day that our kids with Down syndrome are mainly visual learners and math tended to be the most challenging subject. I don’t remember many other details about the sit-down portion of that meeting.

However, I did take home one key element–questions are good, but you can also get too far ahead of yourself. I wanted to know everything, right now. I wanted those funky, surreal clouds to disappear and the answers to make themselves known. And they would, in time. In time I would learn about Wil’s math skills. In time I would learn about Wil’s visual learning. But right then, I realized that what I most needed was having my feelings validated. For someone to say, you know what, I was there too. For someone to say, yes, you have a beautiful baby, but it’s also ok to feel sad, to feel scared, to feel like you don’t know what is happening. For someone to say, we have tried to decipher the same Picasso clouds too, and we have walked through them, and we promise, and promise again, the sun is shining on the other side. It may be a Picasso sun, and you will appreciate this type of sun more for having known the Picasso clouds.

Time is hugely discomforting as you wait for answers. And that is exactly why time is also a healer. Some things must happen with time. With experience. With day-to-day learning. Living in the unknown is an unsettling place to be. I thought knowing the answers would heal my pain. But it was the time with my son, and experiences with my son, that opened my eyes to the beauty of our new landscape.

On the last Sunday of September each year, I walk into a big park. Some years there is sunshine. Some years there are clouds. And some years there is rain. But every year, you will find multiple volunteers assembling long rows of tables lined with chairs. A big truck will pull up and unpack banners, balloons, t-shirts, food trays and such. Another big truck will arrive with a stage and band equipment. Once the stage, instruments and speakers are set up, the music begins to play. There are many spare instruments laid out for anyone who would like to play with the band.It doesn’t take long before a huge group of kids and adults with and without Down syndrome are dancing and playing with the band. There are multiple families and friends clustered around the stage. They mingle and move around and talk with one another. There is a sense of ease about them—even if they don’t know one another, they all have a common bond that brings them together.

This is a surreal dream. One that I now can’t imagine not living in. Those funky Picasso clouds and sun I once wondered at, are our normal. The promises I held so tightly to those years ago did come true. Time, experience, and support truly are healers. If I had to scoop it all up in my arms and label it, I’d still call it “overwhelm.” Overwhelm of joy, gratitude, fortitude and community.

Wil and me (2).jpg

Special Needs, Peers & Boundaries

Many schools have a peer-to-peer program in the middle and/or high schools. These peer-to-peer programs are where a typically developing student is linked with a student with special needs. At our school this program is called Connect. Wil, who is in 7th grade, has been linked with two high school students, a male and a female.

Wil adores his Connect friends. They visit him during his Independent Life Skills time in the resource room. They work with him on projects, crafts and cooking. He most especially enjoys cooking with his Connect friends. It’s been an enriching experience for Wil to work with his Connect friends, and I believe for his Connect friends to work with him. On days when Wil is feeling unmotivated, his teachers will remind him he is seeing his Connect friends, and that will–on most days–perk him up.

Being in 7th grade is an interesting time for most students. Their bodies are changing, their hormones are firing, and their independence is sought. Wil is no different. His assertion for independence has him taking a few liberties with his Connect friends. He may pick up one of their spoons and throw it on the floor. Or give them a hug then mess up their hair. He’s pushing the boundaries, and also looking for attention. If he were a typical student throwing a friend’s spoon on the floor, or messing their hair, he’d get a “Hey, what did you do that for?” However, kids with special needs tend to get some extra latitude. Wil may get a laugh, rather than a reprimand. Or his behavior will go ignored as the kids simply do not know what to say. His typical peers want to be kind, and fear upsetting him.

I completely understand this, it can be complicated with the communication differences. Wil is not in elementary school anymore. Kids talk a lot faster, there is lightening back and forth processing, and Wil can feel lost in the sea of back and forth communication. A toss of a spoon, or a mess of the hair takes all of that back-and-forth and draws it to a halt. He gets the reaction he was looking for, everyone is kind and thinks, “Oh that’s just Wil,” and moves on.

If you decide to have a dialogue with Wil about why this is wrong and not respectful to friends, you will see his attention wander and probably before you are done talking, he’ll have tossed your spoon again. If you get upset with Wil, he may cry or shut down. He hears and feels the anger and takes this as an attack on his person rather than a correction of the act. A straightforward and firm, “Please do not do that. That’s my spoon, I was eating with it.” Or “Please do not mess my hair. I don’t like it.” He’ll understand that you don’t like it and why in just a few short words. I can’t promise he won’t do it again, but it will come to a halt the more that is said with each instance. And most importantly, he is being treated and respected like a peer.

This is why Wil’s relationship with his sisters is very beneficial. Basically, they don’t put up with his crap. If he does something like talking with his mouth full, Katherine will say, “Wil, that is gross. Babies do that.”

“I’m not a baby!” He will yell back. And that’s the end of that.

Or if he is badgering his sisters for attention, they will change gears with the power of distraction. “Hey Wil, let’s go walk Woody.” They will remind him to get his boots on, that it’s muddy. On the walk, Wil will find every big stick he can and show it to them. His sisters will ooooh and ahhhh at first, then growing tired of it, they will tell him that’s enough.

In that way, he learns boundaries just as naturally as anyone else does.

In many ways Wil is like any typical peer. When he is misbehaving, that misbehavior should be commented on and corrected. When he’s getting annoying by repeating an action over and over, he should be told, ok, dude, that was cool at first but now that’s enough.

Sounds simple, right? So why doesn’t it happen? Wil acts younger in many ways, so it’s easy to treat him younger. Wil is very sweet, he loves unconditionally, so his friends don’t want to hurt his feelings. All of those reasons are completely understandable. Back when I was that age, I would have done the same thing. That is also what makes these situations excellent learning opportunities. Just this morning Wil gave me a hug and started messing with my hair. I pulled out of his hug, looked at him and said, “Wil, I love your hugs. But please do not mess with my hair, or anyone’s hair. People don’t like that.”

“Ok, Mom.” He stopped messing with my hair and gave me another hug. He will likely mess with my hair again on another occasion, when he is feeling feisty. I will again say the same thing in the same way. Eventually he will stop doing it. It can take multiple reminders before he decides to respect those boundaries. Sometimes it takes just one. But the important point is the boundaries need to be set.

Wil’s Connect friends are learning how to set boundaries with Wil and Wil is learning how to respect their boundaries. What it comes down to is mutual respect amongst peers, no matter what the similarities or differences are among them. This Connect program carries with it the essential life skills of working with varying abilities and personalities with care, firmness, kindness and respect. And this crew is proving what a great time you can have doing just that.

79864123_2542951742595152_8994715820626018304_n.jpg