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.

Grasping at Air

You receive an unexpected label. Your life gets thrown off balance. But you have the label. A definition. A meaning. It makes this unexpected label tangible even if it doesn’t make sense in your life yet. The label is so foreign you can run your hand right through it as if it were a ghost. But the ghost hovers all the same. You have so many unanswered questions. The ghost is almost an illusion with barely defined lines.

What does this all mean? Why did this happen? Will it affect my marriage? How will it affect his sisters? Will he have friends? What will he do as he gets older? As difficult as those questions are, you still have questions to ask. They fill in the outlines of the ghost. Soon, you find more and more answers. That silly ghost isn’t so scary anymore. In fact, once you have filled in so many of the blanks, he is fully revealed for the fear mongerer his is and truly disappears. You realize you don’t need ALL of the answers. What you really need are friends that understand this journey and good physical, speech and occupational therapist, and specific health specialists. You discover that Trisomy 21 is not what you expected but no less beautiful place to be.

You have come full circle. You have full acceptance. Life is humming along for the most part, of course with certain bumps in the road. But you get through those, and you are coasting along. Then, 12 years later, you are watching a group of kids play in the lake. Your son wants so badly to play with them, but he can’t swim as well. He can’t swim as fast. You see him watch with yearning to do what they are doing. And it hurts you inside. And it’s not just at the lake that this is happening. It’s on the play ground. It’s on the soccer field. It’s pretty much everywhere he’s with kids his age. Kids his age are doing much more than he is physically capable of. They are moving faster, they are talking faster, they are moving on to big kid things. It’s not that these kids are unkind. There are always the kids that go out of their way to include your son. But the writing is on the wall. The gap between your son and his typical peers is growing. I thought about how I would discuss these upcoming changes with him as they come. How I would handle these changes as they come.

When Wil was born, I had a label. A definition. A meaning. Something tangible to hold onto even though my fingers went through the label as I tried to grasp it. But still, I was able to fill in the blanks and give the label an outline. I had specific questions to which there were specific answers. The journey, the individual experiences of our lives, have no such specificity. Just any day along the way can sneak up on you, encircle you with the wind of change, and leave you spinning and wondering at the solutions.I would argue that these are our true acceptance times. These are the times that you feel the fear and frustration underneath, but you would not change your child having Trisomy 21 for anything. This is the life you have, the life you embrace and love. Though my story and yours may not be parallel, we all have intertwined journeys that have no concrete answers. They can only be answered by living, sharing and by experience. I find that to be beautiful; to be truly living.

Yes, I have full acceptance of Trisomy 21. I started this journey with concrete answers. They helped me get my footing when I was grasping at air. Now, the answers are not so concrete. I suppose in a way, I’m still grasping at air. But now I find that air exhilerating. I guess that is when you really know you’ve truly come full circle. That even though you may never stop grasping at air, you are still thankful to be breathing it all in, to be exactly right where you are, right here, right now, even if it leaves you spinning at times.

Here’s Looking Up For You Kid!

When I looked down at my baby, laying peacefully in his crib, it all seemed so wrong. How could a peaceful sight such as this feel so very painful. I had received words of sympathy, friends cried with me. Though I had questioned the idea before, this was the first time I truly felt that Life was left to Fate.

Life always proves to be a teacher. I realized, as I fought for my baby, I also was fighting for myself. My point of view. I met people who congratulated me on the birth of my beautiful son. Who had no tears but offered hope and stories of how those with Down syndrome in their lives had changed their lives not for the worse, but for the better.

I realized how we all have this inner desire for experiences to be easy. And this experience certainly does not fall into that category. Ahhh, but Life the powerful teacher revealed Life is not Fate. Life has a plan. My peaceful baby was perfect, just as he was created. The only thing wrong was the way I was looking at things.

I do not regret my tears. I do not regret my pain. They are the tools I needed to work through to know the immense joy I have now surrounding my son. To see every challenge as a new opportunity to grow rather than a burden to cross.

I look at my son, singing playfully in his room. He is now 12 years old. We are in the midst of puberty. I do not fret or worry, though I know the challenges are real. I have friends who have travelled this road that will support me and guide me. And when we have moved on to the next path, I will reach back and support those who are embarking on the road to puberty.

This is a one step at a time journey. Though I had questioned the idea before, I truly feel that Life is full of Love. I only needed to lift my downtrodden eyes to see Life in a new Light.

Emphasis on Happiness

“Ok, Wil, here is your sandwich.”
“Thanks, Mom.”
“Uh, oh, there is a bite missing! How did that happen?”
“Awww, Mom, it was you.”
“Me? Huh, no way!”
“It was definitely you!”

“Definitely” adverb. Without doubt (used for emphasis).

Definitely is not a word essential to getting a message across. When kids start speaking, they give you the one or two essential words. “No!” “Hungry!” Soon, they start adding 2-3 essentials together. “Pick me up!” “You go!” “Wake up now!” And then they start peppering in the extras. No big news here, but it’s still darn exciting when those first words come, and then the second words, and soon there are short burst of sentences. By the time our kids are adding in the extras, we are on to bigger things.

Unless your child takes longer than others to put those essentials together. Eliciting one essential word may take multiple techniques to draw out. But here’s the bonus: With every single step toward a new word your perspective starts to change. You are so honed in on what is happening, the essential words become the extras. Words like definitely aren’t even on the radar. If you can just get one word, your whole world will turn upside down. And then 2 words, did your heart just burst in a million pieces for 2 words? Well, yes it did! You begin to notice every little change in sound, a rise or dip in tone, the process in formation of each blossoming word. And with all of that said, some words just bust out of your child’s mouth as if he’s been saying that word effortlessly for years. They will stare at you in awe as you jump up and down with joy for what they have no idea!

Wil has been speaking in sentences for quite some time now. We’ve moved on to working on initiating conversations: “Do you want to play Uno?” (be weary of accepting this invitation, the kid throws down Wild +4 cards with no remorse). Even so, I still feel a deep inner joy each time he spouts off a multi-word sentence. He’s started peppering his sentences with adverbs and adjectives now. They are quite impromptu. While most of his sentences contain the essentials, he’ll throw a little impromptu surprise party on an otherwise typical day saying that it was “definitely” me who took a bite from his sandwich. Then he walks off with his sandwich while I’m doing cartwheels across the kitchen floor.

“Down syndrome.” noun. Essential for happiness (emphasis on perspective change).

He’s Got That Extra

At a stoplight in Chelsea, Wil squinted down on my phone and scrolled through Amazon Music to find his newest favorite, “Down to the Honkytonk” buy Jake Ouwen. He found it, hit Bluetooth audio on my radio and turned the dial up loud. I discreetly took it down a notch with the volume on my steering wheel.

We had just left Wil’s audiology appointment. His left ear tested just below normal. His right ear test came back with a big dip with higher pitched noises. The results are questionable whether the dip is due to fluid in his ears. The next step is to drain the fluid, then have his ears checked again. Nothing earth shattering, all things we can work with, just more appointments to juggle. As I pondered the possibility of convincing him to wear hearing aids while wearing his glasses is still a work in progress, I saw Wil’s arm raise up in my peripheral vision. I looked over to see Wil waving while never breaking stride from dancing in his seat.

I followed the direction of his wave to a gold pick-up truck also waiting at the light in the neighboring lane. The pick-up was just ahead of us so we were parallel with the truck’s bed. Out the truck’s back sliding window was a boy of about 15-years-old. He had his arm fully stretched out of the window waving enthusiastically at Wil with a friendly smile.

After Wil gave a few waves he got right back to the business of singing and dancing in his seat. The boy and I shared a smile at Wil’s energetic singing and soon the light changed. We gave a quick wave and were off in our own different directions.

As I turned left onto M-52 headed home, I joined in with Wil and we belted out together, “I go down to the honkytonk, I go down to the honkytonk, I go down to the honkytonk
I go down to the honkytonk!”

A Parallel of Endurance Running & Raising a Child with Special Needs

There is a certain discipline to be found in the marathon training’s easy run. On the surface it looks slow. And it is. But do not mistake that slowness for ineffectivness.

Underneath the slow run, things are happening. Essential mitochondria is building in the body to supply much needed energy for the distance. At one time I cringed as my Garmin posted my easy run times. But now I know how important they are to run the distance. Not only that, my body stays fresh to meet the demanding paces on essential speedwork.

I can’t compare myself to those training for a 5k, 10k or 1/2 marathon. All of my training points to the distance. So on easy days, I let them fly by and stay in my own lane confident in what my body is doing for me. I enjoy these easy run days for an entirely different reason, as well. They compare so beautifully with raising a child with special needs.

Wil’s typical peers are the 5k, 10k and 1/2 marathon runners. They move at a much higher speed than Wil. All the races they run are equally important, but differ in their strategy. Wil’s is an endurance race. A race that requires a build-up of progress over time. What may not be as immediately seen on the surface, is not to be mistaken for a lack of all that is building up over time behind the scenes.

So while Wil’s friends fly by at their own speed, we are doing the easy run, building up progress over time. We stay in our own lane, wave at those that fly by, knowing we are exactly where we are supposed to be. Building, growing, strengthening and fully capable of handling the long, winding and scenic road ahead.