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

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.

24993550_10215113923942864_2467380109397389220_n

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

 

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.

81095074_10221552302498304_8401281293144293376_n