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DOWN SYNDROME AWARENESS MONTH – Day 5
The word “retard” is never ok. Not joking around, not in play, not in any way. Nope, no-how, no-way.
Still having a problem with that? Spend a few minutes with these two, and you will know exactly what I mean. Respect and rejoice will easily rise to the top of your “r” word vocabulary.

With the multiple similarities and differences between having 46 or 47 chromosomes, when it comes down to it, Wil is my son and that’s all that truly counts.

Wil does not “suffer” from Down syndrome. Nor does he have a “disease.” Please do not be “sorry” for us. We celebrate Wil and ALL that he is, including his extra special chromosome!

DOWN SYNDROME AWARENESS MONTH, Day 2!

Our kids are not always super sweet and happy. Wil hurts, Wil gets angry, Wil gets stubborn and digs in his heels, just like any one of us. But one trait Wil has that not all of us use…is though he remembers the hurt and anger, he never holds a grudge. He moves on and lives fully in the next moment. That is one reason he is happy, loving and giving of that love more than most of us. Wil is an amazing teacher not because he lectures. Wil is an amazing teacher simply by living life the way he does and those of us fortunate enough to be part of his life learn and receive much.

Kisses to all our friends who support Down Syndrome Awareness and this special guy! It takes a village and we have an amazing one! Happy Down Syndrome Awareness Month!!!!

We all need hugs every day. I believe there is even science to prove it. It’s easy to forget that though, in the hustle and bustle of everyday life.

Wil never, ever forgets a hug. And he will not accept a quick, routine hug. It must be bonafide–a hug that conveys a true exchange of emotion.

Upon waking, Wil says, “Hug!” and links his arms around my neck. When I hand him his toothbrush he says, “Hug!” and we giggle at our reflection hugging in the mirror. When he comes home from school he says, “Hug!” and proceeds to tell me about his day, or pulls a drawing out of his backpack to show me.

Even if we are in a hurry, he won’t release his hug until he feels he’s gotten his true, shared hug back. As common as Wil’s hugs are, they never become commonplace.

These hugs, even on our busiest mornings (especially on our busiest mornings), are my wake-up calls. They lift my head above the fog of minutia to again see clearly the wider and brighter picture. When I believe I have not a second to spare is exactly when the longest hugs are most required.
(Photo: Wil and his amazing teacher).

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.