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.

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You Don’t Need to be Special to Raise a Child with Special Needs

“To raise someone with special needs—it really takes someone special to do that.”

What does that mean exactly? Did I need a certain number of qualifications to be certified as special? Or was there some checklist I filled out? Who does the interviews anyway? I’m really confused as to how I qualified. I mean, I didn’t ask for this. But I do have a son, and I love him. Does that make me qualified? We might take a different route sometimes. So is that it? But don’t you take the routes that you need to when you love somebody?

If only those of us who have passed some invisible test raise a child with special needs, when will there be acceptance? I won’t deny the challenges are there. I won’t deny that many need to rise to an entire new level of dedication. And I do revel in the inspiration I derive from other parents who do rise to such levels. But when it comes down to it, are any of us qualified as more special, because we are doing what we need to for the love of our children? Isn’t that what any parent would do? Would I do less for my child with special needs just because that journey looks different?

I was talking to a mother who has adopted multiple children with special needs. She gets asked all the time how she does it. Her answer is: “We just do it. Anyone could do it.”

There is a teenaged girl on our Challenger baseball team. She is in a wheelchair and has very little function of her arms and none of her legs. Her mother stands over her daughter’s wheelchair at home plate, wraps her daughter’s hands around the bat, and they both hit the ball as it’s pitched to them. Her mother then grabs the back handles of her daughter’s wheelchair and makes an all-out sprint to first base. The mother and daughter both laugh on their way. (you can’t help but laugh with them) When the next batter comes up, while the mother and daughter wait at first base, the mother will make conversation with her daughter. Her daughter, who is non-verbal, will make head nods or noises in response. They talk back and forth this way until the batter hits the ball. As this is Challenger baseball, and the kids all have varying levels of abilities, it may take some time before the ball is hit. Once the ball is hit, the mother once again makes a mad dash with her daughter, both laughing, to second base. This goes on until they make it to home plate. It’s a joy to watch.

Do I find this situation inspiring? Absolutely. Do I think this mother is someone special? You betcha. But, here’s the thing: this is their normal. This mother did not pass some kind of test or interview to be qualified as special. This mother is doing what she does because she loves her daughter. Her journey quite likely looks different than yours and mine. Her journey may be more challenging than yours and mine. But she loves her daughter just like you love yours. This is the way they have fun and connect with all of the capabilities she and her daughter have. Isn’t that what we all do in our own way?

The challenges may be higher, and the situations may look different, but when it comes down to it, we are all parents who love our kids. The love for our kids is special, and it lives inside of all of us. Not just a select few. We are all doing the best we can, with the capabilities we have, in the villages we surround ourselves with.

We just do it. Anyone could do it.

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Life with Down Syndrome: Never a Dull Moment

Last night, Katherine had Crossfit at 5:30pm, and during her hour there, Elizabeth, Wil and I grocery shopped. I wasn’t feeling that well (some winter bug), so wanted to make it a quick visit. We picked up the necessary items for dinner, then got into the grocery line. The line was quite long. As we waited in the grocery line, Wil spied a Sprite in the cooler.

“Look, Mom, Sprite!”

“Yes, Wil, you love Sprite.”

He started to walk toward the cooler. I put my hand on his shoulder to stop him.

“Not tonight, buddy. Remember, Sprite is your reward for riding the bus. If you want a water, I’ll buy you one. Would you like a water?”

“No, Sprite.” <of course>

“Wil, if you’d like a drink, water is your choice. We are saving Sprite as your reward for riding the bus after school.”

“Yes, mom, I ride the bus.” He said this very seriously. We’ve had instances where Wil refuses to ride the bus. It’s typically when he is having a tough day for any number of reasons. It’s a way for him to have control of the situation. But his teachers and I want to develop this independent habit of getting on the bus and riding it home every day. When he does ride the bus, he feels great pride in his independence. Though I’m not a fan of soft drinks, right now I’m going with the “whatever works” policy. And what works is his knowledge of a Sprite waiting for him in the fridge when he gets off the bus.

“Yes, you do ride the bus, Wil, and I’m very proud of you for doing that. Sprite is for after the bus. Tonight, your choice is water.”

He pondered this for a moment. Right now I could tell he was on edge. In these situations it was very possible that he would decide to dig his heels in about the Sprite. Which means he would go for the cooler against my protest. If I held him back he would sit on the floor on the spot and refuse to move. If I tried to move him he would kick or push me away. He’s getting too big to pick up, but if I did that, he’d get extremely upset and cry. It’s a very sad cry. A sobbing, body shaking kind of cry. It’s more than not getting what he wants. It’s about feeling out of control of his situation.

I leaned into Elizabeth and said quietly, “If this starts to blow up, I’ll give you my keys to walk Wil to the car.” She nodded knowingly.

“Wil, how about we take a walk and see what kinds of water they have? Elizabeth, would you mind waiting in line while Wil and I pick out a water?”

“Sure,” she said.

Wi agreed, so we walked across the numbered aisles and their accompanying coolers until we found one with bottles of water. He chose the bottle of water that appealed to him and we walked back and met up with Elizabeth in line. It was all gloriously uneventful.

If Wil refused and it turned into a full blown plop-on-the-floor-on-the-spot-and-not-move situation, our best choice is to wait it out. The last time we went to the grocery store, I gave him a choice of whether he wanted to go or not. It was the weekend, so Matt was home. Wil said he wanted to go. However, when we arrived, he refused to get out of the car. Elizabeth offered to wait with him in the car while Katherine and I went in to shop. I don’t always know the reasoning behind his refusal. Sometimes he’s simply tired. Sometimes there is something about the situation that overwhelms him. Sometimes it’s a matter of exerting his independence. A friend gave me a technique where Wil and I would count back from 10 together and then make a new choice. That worked at one point, but does not work now. Sometimes I can reason with him. Sometimes I can’t. We live a life of “sometimes” and “whatever works” with Wil. Yet, even though it sounds contradictory, consistency is a must when responding to Wil. I can’t say yes to a Sprite one time for Wil, and then not another. That’s extremely confusing for him. So though I live in a “sometimes” and “whatever works” with Wil, I must reply in consistency the best I know how.

It’s important to give him the time to make a choice– whether he makes that choice by sitting on the floor, staying in the car, or walking to the coolers in the grocery store. Wil requires extra time to process what his next step will be, and every single one of us has the need to feel we have choices. Rush him and you are asking to set yourself back even further.

Last night, I found his decision to walk with me to the various coolers looking for water to be a sign of maturity. He was thinking beyond immediate gratification. He reasoned through his choices and valued the meaning of a reward in the future.

Milestones with Wil are rarely smooth to emerge. They take a lot of patience, thought and trial and error. So when they arrive like last night, they are never overlooked or taken for granted.

I was recently told by someone that they enjoy my zest for life. Situations like last night are exactly the reason. I was standing in line at a grocery store when all this happened, for goodness sakes. How mundane can you get? Yet, in this grocery line, a piece of magic happened. A milestone emerged. Life can never be mundane for me, thanks for the eye-opening life with Wil.

I know Elizabeth and Katherine see this too. I have no doubt it’s hard for either of them to have the patience they do with their brother. This level of patience with his “sometimes” behavior applies to everywhere we go. But it’s also their norm. It’s just what they do. Elizabeth has said to me on a number of occasions, “I just don’t understand why people can’t accept people just as they are.” Because that’s what she does, every single day.

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Shades of a Smile

There is something about people with Down syndrome that make strangers smile.

There are the warm, friendly smiles. These are those who have an acquaintance with Ds or have a positive image of people with Ds.

Then there are the he’s-so-darn-adorable smiles—just because he is and it makes you smile.

There are smiles of sympathy (those are where they look at Wil with concern, then the smile appears when they look up at me and there’s a sadness in their eyes).

Then, my absolute favorite, is the knowing smile. They look at Wil a little longer, and this far off smile appears on their face. You can feel the connection. Then they look up at me like we know each other—their smile says “I know you even though we haven’t met yet.” Sometimes they will share with me about the person they love with Ds. Sometimes they won’t. Either way I know they love somebody with Down syndrome. It’s a beautiful connection, if only through a smile.

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Today was a Tail Feather Shaker

Driving home from work this morning I received a call from Katherine.

“Mom, Wil is in the shower and he won’t get out. We have to leave in 15 minutes.”

“Ok, see if you can urge him out. If not, keep getting yourself ready and I’ll be home in 5 minutes. Has he eaten yet?”

“No.”

“Ok, what does he want for breakfast?”

“Sandwiches.”

“Ok, good, thanks. See you soon.” 

This is no new scenerio. Some mornings Wil hops out of bed ready to go, and other mornings take more time. We all have those kinds of mornings for whatever reason. The challenging part is, where we all understand the need for urgency, Wil could care less about urgency. Any rushing sets you 10 steps back. 

Not too long ago Wil would not get out of bed. Would not, no, no, no. Even with the most patience, he was stuck in a funk. He was moving so slow, that there was no way that he and his sisters wouldn’t be late for school. I convinced him to at least get in the car so I could take his sisters to school on time, it wasn’t fair for them to be late, and that the two of us would go back and finish getting ready. Even with that extra time, he still had a challenging day. Those funks can be hard to break for all of us. Consider having verbal delays where you are unable to express in words how you are feeling–this makes it all the more frustrating. 

When these halting mornings are happening, there are typically 3 key questions that need to be answered to anticipate the outcome in this situation: Is he staying in the shower out of independence? Or is it an act of defiance? Or is he simply enjoying the shower and not ready to get out?

If it’s the first one, he’s generally in good spirits and it’s simply that he wants to determine his shower time like most tweens and teens. With a little pleasant urging, he’s usually more than happy to get out and get ready for school. But if he’s rushed, this situation can easily move into key question #2. If it’s obstinance, its hands down being late to school. It means there is something bigger brewing under the surface and I need to find a way to help him get through it. This always takes time. Any amount of rushing and his heels will find a way to dig into that slippery shower floor and they won’t be coming out anytime soon. Giving him time and allowing him to regroup his emotions is the best way to get through this bump in the road. Question #3 is my favorite. Don’t we all like to linger in the shower a little longer? 

When I arrived home, sure enough, Wil was still in the shower. I pulled back the shower curtain. 

“Hi Mommy! Watch this.” He did a pantomime dive down the the base of the tub and started to pretend to swim. 

<Phew, no obstinance. Clearly he just wasn’t ready to get out of the shower>

“That’s really good you little fish! Hey, it’s time to get to school. If we move fast enough, you’ll still have time to eat one of your two sandwiches. You can take the other one with you(he loves to take his unfinished breakfast into school).” 

“Ok!” How do you spell relief? O-K! 

He stepped out of the shower, picking up his towel, held it in front of him, and shook his bare little tail feather in a dance. I wrapped the towel around him and he ran off still dripping water to his room. 

When I followed him into his room, I saw he had already picked out his clothes. His shirt, pants and underwear were all neatly stacked on his bed. Can you spell Independence with a Capital I?!!! 

We had five minutes left. I slapped together his sandwiches and he ate one while I put on and tied his shoes. I put the other in a tupperware dish to carry to school. 

“You’ll be able to eat one and take the other with you.”

“Ok!” Did I just hear the sound of music? So many ok’s at once, my heart overflows. Clearly this morning, he was ready to hustle and get off to school. 

We only left the house 3 minutes later than usual and the kids arrived to school on time. 

When halting mornings happen, I typically start them with questions. And when they don’t work out well, I ask more and more questions. When you are raising a child with communication barriers, the questions are necessary for everyone’s success. Some questions will never be answered, but many will–those answers help us take the next step forward. After many halting mornings where there were seemingly no answers, today was a resounding success. 

When I pulled back the shower curtain I did not know what I was going to get. To hear Wil’s uplifted voice say, “Hi Mommy!” was music to my ears. That swift 18 minutes this morning was a life-winning race. Today it feels like Katherine, Elizabeth, Wil and I are all wearing medals around our necks. 

Shake your tail feather to big, little victories! Onward!