As the Challenges Grow, we sing Happy Happy Joy Joy

Wil has had a tough few days. Sometimes I can find the trigger, sometimes I can’t. Thursday I know what the trigger was. 

In an unsual set of circumstances, I worked late Wednesday night and early Thursday morning. This meant I did not put Wil to bed nor wake him up the next morning. Two mornings a week Katherine and Elizabeth wake Wil up and help him get ready for school. I arrive home just in time to take them to school. Most of the time this works out great. But, like all of us, some mornings for any number of reasons are harder or easier than others. 

I prepared Wil for my being gone Wednesday night and Thursday morning. I told him I’d come in his room when I got home from work to give him a hug, and that his sisters would be there in the morning. He said ok. However, when I returned from work Thursday morning I could tell it was going to be tough. And it was. He had a stubborn day and refused to get on the bus.

Yesterday was a stubborn day too. I’m not sure why that was. But it was. To prevent another stubborn day, this morning I woke him up 10 minutes early. I always lay down with him in the morning –other than the mornings his sisters wake him up– and we take about 10 minutes to laugh, giggle and he asks for lots of hugs. So today, by waking him up 10 minutes early, that means we spent 20 minutes of laughs, giggles and hugs. He got out of bed and was singing all morning. “Happy, Happy, Joy, Joy, Happy, Happy, Joy!” He ate a turkey burger (he’s definitey a dinner for breakfast kind of guy). Then when I heated up some egg casserole for myself that we had made the night before, he stole that from me and ate it too! 

There are many stops and starts in our days. Even with homework last night. We did it in pieces, as fortunately we had the time to do last night. He was humming along through the questions until he was in the process of writing out the word “P-r-e-s-i-d-e-n-t.” When he got to the “d” he wrote a “t” instead.
“Oh, Wil, hold on, that’s supposed to be a “d.” Presi DDD ent.”
“No, T. Presitent.”
“It can sound like a “t” but it is a “d.’ Presi DDDent.”
“No, T.” 
Pencil down. Arms crossed.

Fortunately there was time to burn in the evening and we only had a few questions left to answer.
“Hey Buddy, how about we take a break. You’ve done an amazing job getting through this. Let’s finish after dinner.”
“Ok, Mom.”

I never quite know how “after dinner” will go. So after dinner, “Wil, how about we finish those last few questions?”
“Ok, Mom!” 
<sigh of relief>
We breezed through them and then I said, “Ok, pajama time and then some free time before bed.”
“Ok, Mom!”

Just like any 12-year-old boy, Wil is dealing with hormonal changes. His mood can shift with the wind. One moment he’s happy-go-lucky and the next his heels are stuck in the ground until he is good and ready. He’s typical in so many ways, and yet he is not. This world is made for those of us with 46 chromosomes as differing as we are. It moves at a whirlwind pace for Wil and it keeps getting faster. 

I was told once, many years ago, as I was delighting over how Wil was doing in 3rd grade, “You know it’s going to get harder as Wil gets older.” I believe this person thought I had blinders on. That because Wil was having such a good year, I didn’t see the struggles that were ahead. And you know what? That person was right on one point. It is harder. 
But I don’t wear blinders and I never did. My optimism is my strength. 

When Wil was plopped down in the stairwell at the end of the day refusing to get on the bus, two of his friends encouraged him up. It took multiple tactics but they were able to eventually get him up, running and laughing. Soon they were outside joining other friends. Moments like these encourage compassion in others, cooperation in Wil, and delight in a mother witnessing it all. So yes it’s hard, but the rewards are far reaching. Every day there is a lesson in his actions. As hard as it can be, we need the Wil’s of this world to slow us down from time to time. Can you imagine what a different day it would be for all of us if we took 10 extra minutes of laughter and hugs to start our day? Happy, Happy, Joy, Joy, Happy, Happy, Joy!

Finding yourself in the present moment: When you can’t press time on a child with Down syndrome

I meditate. 10 minutes a day. With Headspace. I get to choose when and where I meditate. My chosen 10 minutes of living in the present. It is bliss. It is zen. It is being. It is da bomb. 

But being put in the present moment when it’s not my chosen 10 minutes? Is there a fast-forward button on this present moment thing?

Last night Matt and I both got home about 7pm. Wil had two sheets of homework. Just one sheet, depending on Wil’s mood, can take hours or minutes. Currently Wil is congested. So he’s tired. Hours, rather than minutes, was the likely scenario. We usually start homework about 4:30 so Wil can take multiple breaks, if needed. Knowing I’d be home later, I asked Katherine and Elizabeth to work on one of the sheets with him, giving him breaks, and I’d complete the rest with him when I got home. Katherine and Elizabeth are very good at doing homework with Wil, and he enjoys his big sisters’ help. But even they could only elicit 3 answers of the 25 questions from Wil. 

In the end, pulling out all the silliness, encouragement and creativity we could muster, 7 questions were answered of the 25. The other sheet remained completely blank. Wil went to bed and immediately fell asleep. I did the same. It was exhausting for all of us. 

You can’t press time on Wil. The minute he senses force, he responds with like force. Taking breaks is a necessity. A brief break can save hours. He requires encouragement. Silliness always wins. Creativity a must. Some days are a breeze, and other days, like last night, are stumpers. 

On school mornings, I wake Wil up knowing it will take him 10 minutes to get out of bed. He requires a hug first. Then another hug. And another. And another. Then tickles and lots of giggles. Then we decide on what is for breakfast. Eating breakfast is a hot topic. He loves to eat, and it’s usually leftovers from dinner or a sandwich. He’s not into cereal. After breakfast, brushing his teeth is another process. He is a sensory kid. This too requires patience, silliness and creativity. Some days, brushing teeth is left until after school because of the time it can take. 

All of these moments with Wil require me to be present. If I press time on him, then it’s like taking 2 leaps back. Though I can predict these times with a fair amount of accuracy, they are not my chosen times to be in the present. This can be admittedly frustrating. When time feels too short to be in the present moment. Can we just move this show along already? 

At this point in my life, I don’t believe that being in the present moment is filled with bliss. That is, if it’s not at a time of our choosing. When I really want to press time on Wil, but know I can not, I have to find my silliness. I have to find my creativity. I have to find another well of patience. Some days I do better than others. When I reach a point of losing my cool, I get more creative. I get sillier. And my well deepens even more. So while the present moment is not what I’d call bliss, I’m still deeply grateful for my growth in it. Because I can’t press time on Wil, the present moment presses on me to grow. Maybe that is the lesson of the present moment–growth and gratitude. At least that is the theory I’m going with right now. And I’ve got about a million morning hugs to back that theory up. 

My Child with Down Syndrome Has Value—Prove it!

Last night the word “retard” was said on a tv show Elizabeth and I were watching. We both reflexively flinched.

“Why did they even need to say that?” Elizabeth said. “It wasn’t needed at all.”

Word, sister!

Can you imagine proving the value of your child? The mere fact your child was born with one more chromosome leaves you in a position to prove his worth. To tell the world he is not “less than.” He is not the subject of a joke on tv. Because that is how he is seen from the second he is born. In fact, if you have prenatal testing, many will share words of sympathy with you even before your child is born. Can you imagine? Sympathy for the miracle of a new birth?

I wonder, sometimes, why should I have to prove his value? Why do I have to tell people I’m not sorry? Isn’t the fact that he is a human being born into this life miracle enough?

But it’s not enough. So when occurrences like last night happen, I am reminded not to get lax. That even though my immediate community is supportive, there is much outside work to be done.

So I prove. I prove by sharing Wil with you.

Wil sings the whole way to school. Every single day. When you and I are complaining that it’s cloudy, or raining, or snowing, or windy, or what’s ahead in our day, Wil is singing. He has bad days too, but he always makes room for singing. And when the sun comes out, no matter how we may be rushing to the next thing, he always stops, tilts his head to the sky and says, “Oh mom, what a glorious day!” I can’t help but stop and realize the same.

How much can I expect to prove to you? How much can I expect to prove to the television show writers? How much can I expect to prove to the new moms? And expect to prove to those who utter words of sympathy that we’d really love to hear words of their congratulations?

Proving is hard work. That’s why it frustrates me. It stresses me. I feel it falls on closed minds and ears.

Rather, I have chosen to share. Sharing is fun. Sharing is grateful. Sharing is personal even across these vast social media waves. Sharing is what Wil does best. Sharing is the miracle, the singing, the glorious in this life.

Put a Spin On

I opened the car door, felt the wind hit me and my body instinctively stiffened in defense. I looked over to see Wil stepping out of the car–when he felt the wind he muttered an ahhhh, tilted his face to the sky, opened his arms wide and spun around in circles. I decided to follow his lead.

Living a Purposeful Life: Our Friends with Special Needs As Our Greatest Teachers

I see a lot of stressed unhappy people out there. And I wonder, how can we change that? I mean, we all have different battles to fight. And we all have different things that make us happy and sad. The online self-help bookshelves at Amazon have multiple aisles. There are therapists and any drug you can name that advertise relief.

With so many tools available, why do so many seem as stressed as ever? It’s like a competition to see who is busier. I overhead a conversation waiting in the check-out line at a grocery store. Two ladies ran into each other, and soon they were competing over who had less sleep. Is that really a competition you want to win? 

There is a difference between being purposeful and being busy. It seems that being busy is supposed to win us a gold star. But how purposeful are we really in our busyness? Are we missing the point as we run in circles?

I don’t have the answers, but it sure hurts to see so many people hurting. We seem busier but unhappier. I don’t believe there are any secrets but I do believe there are methods to being happier in life. And it does involve making some changes….in who you talk to.

I will tell you, every time I go to a special needs event I am filled up. Not just by the participants, but also those doing the volunteering. Now, I’m being very general here because everyone is an individual; but when you are talking and working with someone with special needs, for the most part, their learning style doesn’t so easily fit the norm. Most of us typical folks adapt even if it isn’t our preferred way of learning. But you can’t tell a child with Down syndrome to hurry up when they don’t want to. It ain’t gonna happen. You can’t talk to a child with autism in generalities, you won’t get through or you will have someone very upset on your hands. You have to slow down and think through what you are going to say. You can’t just force things. You have to look at things from their perspective. Now, that may sound stressful to some of you, and at times it can be. But here’s the secret…it gets you out of your own stressful world that continuously spins around in your head. It forces you to think above all that noise on a different plane. To broaden your perspective and throw in a dose of compassion. And even though you may have some very big things on your plate, these experiences have the power make them shift to a better place in your mind. 

At a recent Special Olympics function, I was sitting on the side of a hill with a few of the athletes. I struck up a conversation with two of the gentleman. One of them works at a nursing home. He stutters a bit, but that did not slow down his enthusiasm in explaining how he cleans the floors, makes the beds, takes care of general room clean-up. I barely needed to ask a question before he was answering it. I was thoroughly enjoying our conversation. I actually found myself almost to tears. I’m sure it was part happiness seeing this young man thrive as Wil will be a young adult in 6 years. But, mostly I think it was the pure joy I felt as a child. Sitting on a grassy hill in the summer sun and having an enthusiastic conversation. It was so refreshing. He wasn’t telling me how stressed he was to clean the floors, or how some coworker was an absolute jerk, or how he hadn’t slept in 3 days. He was a man grateful for his daily life and couldn’t wait to tell me all about it. I want to be more like him. Sorry, ladies competing in the grocery store aisle, my new friend is the real winner. 

So many of us are given more cognitive abilities than this man, and yet we use most of our time stressed to the hilt. I’m not saying that we do not have very important things to attend to. But what I am saying is that it’s ok to take a step back. To take a good look to be sure what we are doing has purpose to it. To find a purpose for growth and a broader perspective, and in some cases, great enthusiasm.

The next time I get stressed, or overwhelm myself, I’m going to bring myself back to the conversation on the grassy hill. Our friends with special needs may need our help to achieve certain goals, but we need their help just as much, if not more, to remember what a purposeful life is meant to be. 

The Building Blocks of Inclusion: Times of Good Fights & Good Peace

I write a lot about acceptance of Down syndrome. I believe in the ultimate value of acceptance. I believe in the good fight. 

And with the good fight, there is also a time of good peace. 
That is the place I am in now. It’s summertime after all. Wil is moving to a new school in the fall, yet in the same school district. There will be changes, but being in the same district many aspects will remain the same. Wil will have a new resource room, new teachers and familiar teachers, a new paraprofessional he will share with likely 3-4 other students. I don’t know who those other students will be yet and how they will mesh. 

If Wil was going into kindergarten, I would be in the good fight mode. I would be nervous about the multitude of changes. How will they know all of his capabilities? Many of the tests taken don’t show what he can do. That is the benefit of being in the same district. The teachers communicate. While tests have their value in certain areas, person-to-person communication rises a-thousandfold over any black and white test. 

I recently talked to a mother who has a young child with Down sydnrome. She is in the good fight mode. She was full of vigor about her good fight with the schools for inclusion. I listened to her with admiration, and remembered those early days. There were so many unknowns. There still are, but I’m in a different place with that now. We’ve been in this district now from preschool through 6th grade. I know we will have hurdles to cross next year. We always do. But I know enough at this point what to anticipate, and many changes will be handled on a day-to-day process. This will change as he becomes a young adult, and I will again be in a place of bigger unknowns. But right now, that is far enough away that I need to plan for it, but not be in the good fight yet. Right now, it is summer time. I’m so much enjoying the good peace. It’s not about letting my guard down, or believing everything is gonna be just fine. I don’t believe I have that kind of luxury. Inclusion is not a given. But there is a time when we can take a deep breath and enjoy the place where we are. 

Every Thursday when Wil goes to Special Olympics golf, I never forget to be thankful for this opportunity. I’m eternally grateful for those who gave the good fight to create Special Olympics and continue to grow this amazing program. It is a luxury to sign Wil up and show up. That’s it. I didn’t have to fight for that because someone else did. They made way for this time of good peace for our family. Progress doesn’t happen in a time of good peace. Progress happens with the good fight.

And still, our hearts need good peace times to fill up. To gain strength in the appreciation we have right here, right now. We live that good fight almost every day. It becomes a habit of sorts. Meeting this young mother who is in the middle of the good fight reminded me of that. 

All of life is a balance. We gain strength from both the good fight and the good peace. Right now, in this summertime, I will take a deep breath from the good peace and be thankful. I do not know what this Fall brings, but I will be refreshed and recharged to build or cross those bridges when the time comes.

Hashbrown Robbery

I’m sharing this experience for those of you who believe kids with Ds have not a single mean bone in their body. You may want to rethink that after reading this: 

This morning, I woke Wil up early for an appointment. I promised him a McDonalds breakfast as added motivation to get up early on a summer morning. Of course he quickly agreed to this arrangement and was up and dressed in mere seconds.

We sat down at the promised McDonalds breakfast. Spread out on yellow wrapping in front of each of us, a Sausage McMuffin with Egg, and a hashbrown snug in it’s white casing. A favorite treat for both of us. We both took a bite of our hashbrowns first, and muttered a simultaneous mmmmmmmmm. Then we set down our hashbrowns, still in their white casing to keep them warm, and got to the serious business of wolfing down our sandwichs, saving the remaining bites of hashbrown for last. 
In between bites of sandwich, Wil was telling me how funny the chef was on the movie “Princess and the Frog”. He had me laughing, and looking back I now believe it was a set-up. His method of distraction. As I was thus distracted by his amusing story of the chef, he quickly reached across the table, grabbed my unsuspecting hashbrown, the white casing falling off, and immediately took a huge bite. My hashbrown! My McDonalds hashbrown! The hashbrown I was saving for last! 

And do you know what he did next when I expressed my dismay? He laughed! Yes, he laughed with his mouth full of my hashbrown. Then he chanted, “l stole Mom’s hashbrown!” and laughed again. He then picked up his own hashbrown and finished his next. I sat there wide-mouthed in shock, my jaw about hitting the yellow wrapping in front of me, that now was devoid of it’s hashbrown.

After breakfast on our drive back home, he continued his laughing and taunting sentence, “I stole Mom’s hashbrown!”

So now you know the truth. And now I know to protect my McDonalds hashbrown with my life and not fall for another “Princess and the Frog” story again.