Author: Christie Taylor

As you know, acceptance with any change in life be it birth, diagnosis, gender, death, is very personal. Everyone arrives to their place of acceptance in their own way and time. If you think the process of acceptance does not change the dynamic of your thinking and extend to your family and the friends you surround yourself with, you would be sadly mistaken.

Be patient with one another. This process is not easy. Surround yourself with supportive and understanding friends, even if you have to seek out an entirely new peer group. Find your tribe, they will get you through anything. You will know them because they have the best listening ears and administer tough love when you feel you can’t find the strength on your own.

When you are knee deep in this path of acceptance, suggestions will be made that look beautiful on paper but do not translate well in real life. You will experience multiple bumps in the road that are hard to explain but are keenly felt. This is a very confusing and challenging place to be. This is again where you need your tribe. They know your struggle by the look in your eyes without ever having to say a word. Their presence and understanding will get you through not only these bumps but over multiple mountains.

You will fall and you will fail in this new path you traverse. There will always be the judges and negaters there to look down on you and tell you “I told you so.” They have the luxury of judgement while you have a life path to keep forging forward on. Some of their words will be easy to dismiss, while others will bite deep. That is exactly the time you need to revisit the reason you started on this new path. Everyone has their own agenda they will pull you into if you are not strong on yours.

Your biggest influence on anyone, including to yourself, is being the best you can possibly be every day no matter how many times you fall. It’s in the falling, in fact, that we learn to help others back up.

Acceptance to any new change is uncharted territory. Many have walked similar paths but no one has walked yours. Share your joy and share your pain along the way, you never know who you may be lifting from a recent fall. Keep on, my friends, together we got this.

Wil has an incredibly infectious belly laugh. He’s all in and before you know it, you are all in with him. It’s a beautiful thing. The only hitch is, he’s so all in that he can quickly and easily lose his bladder. As Wil can find the hilarious in a paper bag, I typically have an extra pair of undies and pants stashed in the car for such frequent occasions.

Last night, the kids and I were headed to Katherine’s Taekwondo lesson. As I had just cleaned out the car from a recent vacation, I had no spares for Wil.

When we arrived at the studio, Katherine headed into her class and Elizabeth, Wil and I hung out in the lobby. Wil does not like the loud noises in the Taekwondo classroom. It was a beautiful late summer evening so Wil and I decided to play outside on the sidewalk while Elizabeth chose to read inside. The sun shone bright and Wil took note of our shadows on the outside wall of the Taekwondo studio. We decided to start shadow dancing. We raised our arms, kicked our legs to the side, hopped, twirled, and gave each other bunny ears. And we laughed. We laughed hard.
In our twirling, Wil decided to add Ring Around the Rosie to our shadow dance. We spun around, and sat down on the concrete sidewalk. As we stood up again, I saw Wil had left a wet imprint on the sidewalk. And there I was with no spares.

Wil was not about to stop our game, but I convinced him that a bathroom break was required and we’d get right back to it. We walked into the studio and into the bathroom. I took off his shorts and undies, rinsed them in the sink with soap and water, rung them out as much as I could, and put them back on him.

“Mom, they are wet!”

“Yes, they are. They were wet before. Now they are clean and wet.”

“Ok. Shadow dancing now?”

“You bet, Buddy!”

We went back outside to our shadow dancing/Ring Around the Rose game until it was time to play knock-knock jokes. We sat on the concrete ground.

“Knock-Knock,” Wil said.

“Who’s there?” I asked.

“Interrupting cow.”

“Interrupting cow who?”

“Moo!” It’s even funnier to me that he doesn’t interrupt but still finds the joke hilarious. We laughed hard. Elizabeth came out and joined us.

“Knock-Knock,” Elizabeth said.

“Who’s there?” Wil and I asked.

“Boo.” Elizabeth said.

“Boo-hoo?” Wil and I asked.

“Why are you crying? It’s just a joke!” And we all busted out laughing.

Soon after Katherine was done with her lesson, she came out to meet us. Wil, Elizabeth and I stood up to walk with her to the car and behind us was a wet seat imprint on the sidewalk. I believe it was a clean mark, but I can’t be entirely sure.

The imprint we leave may not always be clean and the cows may be slow to interrupt, but as long as our imprint speaks of belly laughs and shadow dancing on a summer night, then we can be assured we are leaving behind something good.

 

Hi All!!! I’m very excited to announce I have written an e-book called WILingness.

WILingness is a compilation of my blogs with additions and expansions to spread Down syndrome awareness and inspiration. You may order your e-book today and also lend it to a friend for 14 days!

Please be sure to leave a review on Amazon.com for WILingness!! Thank you for all your support for Wil and Down syndrome awareness!

Click here to order today: WILingness

 

It has been quite some time since Wil has had a meltdown. His meltdowns were due mainly to a breakdown in communication. Now that his communication skills have vastly expanded and continue to improve his meltdowns have become very infrequent. He still has stubborn, dig his heels in the sand moments. I anticipate those stubborn times as they are quite common amongst kids with Down syndrome and a hot topic in our Ds support group. When these infrequent meltdowns do come, I don’t know how to handle them very well now. Wil is bigger, and they usually arrive unexpectedly. The crux of every meltdown, though, has to do with a barrier in communication.

This particular day Wil woke up on the wrong side of the bed. Nothing was making him happy and I asked him what was wrong. I received only a grunt in response. He was either unwilling or unable to communicate his feelings but thankfully his communication level has reached the point where I can now reason with him. I explained that this was his last day of summer school and didn’t he want to finish school on a high note? He thought about that for a moment then quickly agreed. He ate his eggs with gusto and went off to school in good spirits.

Later when I walked into the school to pick him up he was just finishing his occupational therapy session. The door to his classroom was propped open and I peeked through the opening. Wil was sitting at a table across from the occupational therapist, intently arranging blocks.

“Good,” the occupational therapist said. “Now let’s trace these words.”

She had him read the words then trace them. He was very focused and it was clear he enjoyed what he was doing. As a fun end to the session, Wil and the occupational therapist blew bubbles together. Bubbles are one of Wil’s favorite things to do and there were lots of laughs. When they both walked out the door into the hallway to meet me, the occupational therapist said, “Your son has the best manners. He is a pleasant boy to work with. Good job, mom.”  I thanked her for the compliment and felt very proud of Wil for turning around his early morning attitude for an enjoyable and effective last day of summer school.

Directly after Wil’s summer school session, Katherine, Wil and I left to pick up Katherine’s friend, Jayden, for a play date at our home. Wil was very excited to see Jayden. When we arrived home, Wil followed Katherine and Jayden everywhere they went. At first that worked well as they ran through the corn field next door getting lost then found again. Wil ran and got lost and found with them. It was a hot day so after a time they came in the house for glasses of ice water. They then decided to cool off in the basement with the board game of Life before heading back outside again.

I was upstairs making their lunch when I heard Katherine cry out from the basement, “Oh, no, Wil! Why did you do that? Mom!” I went downstairs to see that Wil had flipped over their game. Little colored cars and play money were scattered all over the carpet. Wil ran into the little closet under the stairs that is “his closet.” It contains hooks for all his hats and shelves for his toys. He has a blanket and pillow set up in there. It’s his favorite place to play. At this moment it was his hideaway.

I helped Katherine and Jayden pick little pink and blue stick pieces from the carpet, place them back in their little colored cars, and re-stack play money. I called out to Wil to come over and help.

“No!” He responded through the closed closet door. I walked over to the closet to open the door and he was holding the door shut tight from the other end.

“Wil, you need to help clean up this mess.”

“No!”

I pushed my way in, took his hand and walked him over to the game. He plopped on the carpet, crossed his arms and sat there unmoving. I took his hand as sometimes he will clean up in a hand-over-hand fashion. He pulled his hand out from under mine.

By this time the girls had the rest of the game cleaned up and started to play again. I asked Wil to come upstairs but he would not. I asked if he could play with them nicely but he didn’t answer. I sat with him for a bit, and when he seemed to be cooperative I went back upstairs to finish making their lunch.

Only a few minutes after I left I heard a repeat of what had happened earlier. I ran down the stairs and Wil again retreated to his closet. I was able to get him out but as soon as I did he ran right back to the game and started throwing pieces everywhere. I bear hugged him and gently talked to him as this usually calms him. This only angered him more and he started to kick. I let go and bent down to his level and he turned his head away. From previous experience the only way to calm him when he is like this is to remove him from the situation. He needs a few minutes of quiet time to himself to regroup his thoughts. At school they call it a “motor break” and take him for a walk down the hall. It works very well as he has time to calm down and typically returns in good spirits ready to work. The problem now was he was resisting going anywhere. We have a walkout basement so I took his hand and attempted to lead him outside. He took a few steps then plopped on the floor and crossed his arms and legs (this plopping on the floor is also a common thread among kids with Down syndrome). I could lift him when he was younger, but now he is over 70lbs and not so easy to move. I lifted him up under his armpits and carried him outside. He stayed rigid and kept his legs in a criss-cross position even as I carried him.  He looked like a levitating swami. I carried him this way up the hill in his levitating swami position to our back door. He finally dropped his legs and walked in hesitantly. By now I was tired emotionally and physically coaxing his resistant 70lbs up the hill. I plopped on our Lazy-boy pulling Wil on my lap with my arms still secure under his armpits. I rocked him and sang Frere Jacques (his favorite bedtime song) to soothe him.

I knew what was going on. Wil was having a great time playing in the corn with Katherine and Jayden. It was equal playing ground. When they played the board game, though Katherine and Jayden were including Wil in the game, he didn’t feel the same inclusion. They gave him a car, he was spinning for his turn, but it was clear when they played and read the cards that it was a level beyond his comprehension. He wanted to be playing fully with them like they had played in the corn. Though a negative form of attention, flipping the game gave him their full attention once again. These meltdowns have become less frequent as he has matured and his communication has grown. But when he becomes tired, which I’m sure he was after school and plenty of exercise on a hot day, he had met his threshold. It was also clear that I had just about met my threshold with him physically.

I have a friend Jen, whose son Hayden has severe autism. Hayden can never be left alone. Jen must always be holding his hand, or push him in a stroller. She is constantly physically holding him in some way. Jen never knows when something may upset her son and he may decide to flee at a moment’s notice. Hayden has grown beyond her physical capacity so she has had to learn techniques through a behavioralist to keep him calm when something upsets him.

Though Wil and Hayden have different skill sets and needs, I find great strength in having a connection with people like Jen and Hayden. Sharing stories like the experience I just had with Wil are received sometimes with pity or unsolicited advice. These stories are shared for neither. They are shared for the sheer purpose of understanding. Having friends that share a true perception in these situations, like Jen and Hayden, delivers a great strength to me. We don’t have to share the exact same experiences to develop a compassion for one another.

As I rocked and sang to Wil thinking of Jen and Hayden, I immediately began to relax and regain my hope and strength that we would get through this. We are never, ever alone on this journey. That thought relaxed me fully and Wil responded to that. We rocked and we rocked and Wil finally got to a place where he could regroup his thoughts. When he did, he turned around to look at me and I wiped away his tears. He said, “Go downstairs now?”

 

“Do you feel better now? Can you play nicely with the girls?”

“Yes.”

“Ok, then. Go ahead, honey.”

“Thank you.”

I followed Wil downstairs and by that time the girls had cleaned up their game and had moved on to playing “grocery store” with the play money from their game. Wil quickly grabbed his shopping cart and joined in. Katherine had gotten a big bag I have filled with plastic bags from my shopping trips and they were using those bags for groceries. Wil saw the big bag, ran over to it and started to throw all the little bags everywhere. He was laughing and playing and the frustration he showed moments before was long gone. The girls laughed and joined in under the confetti of floating plastic bags.

Later, after Jayden had gone home, I asked Wil to help me pick up all of the grocery bags and place them back in their big bag.

“Sure,” he said and immediately got to task. No coaxing required. No hand-over-hand. No retreat to his hideaway closet. I thanked him for his help and he said, “You are welcome, Mom.”

“You do have some good manners, Wil. I’m proud of you.”

“I know,” he said. He sure knows how to turn it around.

 

 

 

Wil stood at the edge of the pond with his bare toes dug in the sand. He squinted under the hot sun out to his cousin, Jackson, and Jackson’s friend, Zach, playing on the raft tethered to the pond’s center. Wil took a few tentative steps to the water’s edge. The water lapped the sand from his feet. I knew that was as far as he would go. It isn’t the water Wil is scared of. It’s the unevenness of the surface below him.

Wil will swim for hours in a pool. He’s learned in swim lessons to kick his feet and turn his arms, though he is not able to float on his own. He prefers jumping, splashing and playing in the shallower areas of the pool. The surface is flat, the water is clear and waist-high.

I knew he wanted more than anything to be swimming in the middle of the pond with Jackson and Zach. He simply didn’t have the confidence to do so.

About a year ago, Wil was at my parent’s house. They live on a lake and as this was an impromptu visit so we didn’t have Wil’s swim suit with us. My mom had one of the twin’s bikinis and thought, what the heck, he wants to swim and he won’t care. She gave Wil the bikini bottoms and he excitedly put them on. He said they were “magic” and that he would “swim like my sisters.” He ran out the door to the lake in his magic swim suit. As soon as he reached the lake’s edge, he stopped and looked down. The magic had disappeared. He turned around and jumped in the kiddie pool my parents keep for him in the backyard.

This summer Matt has taken Wil and the twins out to Wampler’s Lake. The water is very shallow in the beach area and Matt has encouraged Wil to walk in. To say it’s taken strong encouragement is a gross understatement. Matt finally managed to get Wil out where the twins were playing and the water was about waist-high. The twins wanted Matt to throw them so he picked up Elizabeth and threw her, then Katherine. They came back again and again. (Now that the twins are approaching 100lbs, he can’t toss them as far as he used to, but they still love the game). Wil wanted to be part of the fun but was very tentative. Matt picked up Wil and gently tossed him. He came up from under water with a look of shock, then smiled and asked for more.

At the pond’s edge, I walked up to Wil and asked if he wanted his life jacket. He quickly said yes. As soon as I snapped the jacket in place Wil started to make his way to the raft. My heart lifted a thousand times as I watched him take step after step to the raft without once looking back. A year of maturity and time with Matt and the twins at Wampler’s Lake gave Wil this confidence. Previously, even with the security of his life jacket, Wil would have quickly returned to shore having felt the slightest shift of elevation under his feet.

The water was no higher than waist-high when Wil reached the raft. He jumped up and managed to propel half of his body onto the raft. He kicked and pulled with his knees and hands until he was able to pull his entire body up on the raft. Jackson and Zach encouraged him until he was sitting right next to them. Wil crossed his legs and sat tall. By the look on his face you would have thought he was king of the world. And in that moment he was.

Wil floated on the raft with Jackson and Zach. Wil jumped off the raft with Jackson and Zach.  He did all of the things that Jackson and Zach did. He was not as fast as they were, and did not climb back on the raft as swiftly and easily as they did, but they gave him a hand when he needed it. He was one of the boys.

As Wil grew more comfortable, he hopped off the raft and swam by himself to a small square foam raft. He turned his arms and kicked his legs to make his way. He has never done this on his own without persuasive coaxing from a family member. Matt and I both watched in awe. When Wil reached the foam raft he again propelled half of his body on, lifted one knee and kicked mightily with the other leg until momentum inched him fully onto the raft. He sat tall for a minute, then sprawled on his stomach, arms and legs outstretched, and energetically splashed the water with this hands.

The twins soon jumped into the pond and the 5 kids played together for hours. When it was finally time to go home, Wil was the last one to come out. He would have stayed longer but I sent the twins back in to coax him out.

Wil wants so much to do what other kids his age do. I want that so much for him, too. He watches his friends, his sisters and their friends. He sees what they can do and wants to join in. The reality is, he does not have their physical strength or cognitive quickness. But, that doesn’t mean there isn’t a place for him.  What Wil accomplished at the pond and what I have seen him accomplish in the past, I know there is always a place for him. Sometimes that place comes naturally and other times it needs to be created.

When it comes to space making, as Wil’s family, we can toss him in the lake right next to his sisters to foster confidence in him. But, when it comes down to it, it’s up to Wil. Wil is the king of his own world. There is no magic swim suit. Wil must decide for himself if he wants to stand at the edge of the pond or jump right in. He alone knows when it’s time to do that.  And I’ll always be there beside him with a life jacket at the ready.

After a full afternoon, the kids and I made a quick stop at Meijer. As we only had a few items, I opted for the self-scan check-out. As soon as we got there, each of the 3 kids wanted to scan an item. I gave them each an item. Elizabeth was having a hard time getting hers to scan, and Wil being tired and impatient, started chasing Katherine around with his loaf of bread he was to scan. The two ran around me as I tried to help Elizabeth. The young check-out person came over with a look of impatience on her face. Elizabeth finally got her item scanned but did not put it in the bag, so as Katherine is trying to scan hers it wouldn’t scan. I pressed the “I Don’t Want To Bag My Item” button on the monitor and thankfully Katherine’s item scanned. Wil scanned his loaf of bread, I quickly swiped my credit card and we were on our way.

Wil was well past his patient limit by this time so he was again antagonizing Katherine and she antagonized him right back. I give him my phone to listen to Spotify, and he chose “Fight Song.” We listen to “Fight Song” once, then twice, then I just lost count after that the whole way home.

When we finally arrived home, my mind was instantly abuzz of what I needed to do before Katherine and I headed out the door to taekwondo. I started dinner, got Wil busy with an activity, and both of the girls went off to do their own thing. Then, my phone rang. I decided to let it go to voicemail, but the ring added an element to my internal stress.

As I was browning the meat on the stove for tacos (a quick dinner all of the kids like), I heard piano music. The beautiful trill immediately relaxed my shoulders and my mind. I found instead of feeling rushed, I was enjoying making dinner. The tasks ahead of me unrolled in order of importance when just minutes before they were a jumble in my head. I looked to where the music was coming from and found Elizabeth on the living room couch with her tablet.

“What is that?” I asked her.

“Its just an app, you can get it, too.”

“Keep playing it while I make dinner, would you? Its so soothing.” She smiled and continued to play her piano game.

I was amazed at how the music changed my entire demeanor. Not only was I more relaxed, I was more efficient. Harmonic magic!

Sometimes, when so much is happening at once, I forget what can be taken care of now and what can be left for another day. I let it all get jumbled up together in my head. The urgent and the important all get mixed into one creating lots of stress for me. The music unwound the jumble in a beautifully simplistic way.

Last night, after taekwondo, we all unloaded on the couch. Matt was reading and the kids turned on an Ice Age movie. I was partially watching the movie with them and talking with Matt. I was relaxed, enjoying us all together, and even though my “to-do” list was far from my mind, I asked Elizabeth to play her piano game again. The music was no less soothing the second time around. As I laid on the couch with my kids and husband, I thought life is often best when we can get down to its simplest moments within the jumble our minds like to create. Where we can see those moments for what they are, feel them and hear them unrolling in front of us like a beautiful string of notes.

I quite enjoy those articles on how to keep your child’s room so simply organized that your child can do it, too! A blissfully neat picture of toys efficiently tucked away in their color-coded cubbies, clothes efficiently hung in a row, and drawers full of clothes folded just so. Everything has a place and its in it’s place. Oh, the simplicity and order. What an effective lesson to teach your child while you enjoy the pure cleanliniess!

I allow myself to soak in the pretty picture for a few more minutes, my mind naturally adores such order and simplicity.

Wil’s room has color-coded cubbies, his dresser also has assigned drawers; top drawer for t-shirts, the one below for long-sleeved shirts, then pants, and finally, the bottom drawer for shorts. He also has a small dresser where the top drawer is full of undies and socks, the one below it contains pajamas.

Wil picks out his own clothes every morning, makes his own bed, takes off his clothes at night, puts on his pajamas, and any toys left out go back in the cubby.
Independence may be a beautiful thing, but with Wil, it’s not always pretty. But, it can be pretty hilarious.

Deciding what to wear, the drawers immediately become a jumble as he goes through every single t-shirt, then shoves the drawer closed to rifle through the long-sleeved shirts. Pants get the same preferential treatment. He does attempt to re-fold, but it looks nothing like my shiny magazine article.

His bed gets re-made, comforter extra long on one side of the bed, extra short on the other, pillows placed lovingly askew, and at the end of the task, an exuberant “Look at my bed, Mommy!” “Great job, buddy!” I reply, and I mean it.

When Wil squeezes toothpaste on his toothbrush, globs constantly slip off to adorn the side of the sink. Each time he rinses and spits, fine splatters dot the faucet, and the rinse cup leaves a ring to intertwine with the previous day’s ring on the countertop. Because I could write an entire blog on the tactics to get this kid to allow a toothbrush in his mouth, I consider where we are today a roaring success.  So, when Wil completes his brushing regiment and blows his sweet breath in my face saying, “Fresh now, mom!” I shine brighter than the sparkling chrome faucet and countertop in my magazine article.

When it’s time to go to bed, Wil picks out his own pajamas with the zest he does his clothes in the morning. His pajama drawer is an immaculate jumble. As he takes off his clothes, he throws them in the air, and it’s been known for his undies to catch the antlers of the deer that hangs on the wall in his room. This causes such laughter, that sometimes, I allow them to hang there all week and we laugh ourselves silly at night over all he undies hanging upon the antlers in his room.

If I’m feeling mischievous reading one of these shiny articles, I daydream of placing Wil right in the middle of that well-laid out room where every detail has been thought out to be seemingly simple to maintain, and then start laughing hysterically as he single-handedly dismantles the room while the perfectionist writer’s neat little bun begins to unravel and frizz. I think it would do her a world of good.

I know it did me, because I was that perfectionist writer at one time. It’s not that I no longer look at the shiny picture in that article and sigh at the idea of it. My mind still loves order and simplicity. Yet, over time, I’ve allowed my hair to frizz out of that neat little bun. Even as well-planned and perfectly laid out you believe you have made your life, life has a way of happening in very unorderly and unexpected ways.

Real life is jumbled drawers and toothpaste globs in the sink. Real life is putting your son to bed and laughing your heads off about the underwear hanging on the wall. Real life is thanking God for placing this incredible little guy in the middle of your shiny, well-laid out picture,  to open your mind to how messily perfect real life really is.