RISE UP WEDNESDAY!
If you don’t like where you are going, in mind or in body, you can stop wherever you are, right now, and make a shift in a new direction. Burn your tires as you squeal around the corner, the wind blowing in your hair, the ground moving fast under your feet, as you feel the empowering freedom of your chosen new perspective for your life.
RISE UP MONDAY!
There are moments in time that still us as they rise above all else. We are again reminded that life is a series of right nows.
Yesterday, I met a woman who has a son in his early 20s that is on the autism spectrum. He now goes to a local college, is driving and lives in the dorms. He is very involved in the school and for the most part is thriving there. He does, however, want a girlfriend and that is a challenge. There are other challenges, as well, as change can be very difficult for individuals with autism. She said to me, “I feel like he is blessed. Like everything he does is blessed. And we have been blessed by him. But not everybody understands. It’s very important you have a support group. You need someone to help guide you or to understand your decisions. I’ve been judged by a lot of people that just don’t understand. Make sure you have support.”
When she said this I fully understood where she was coming from. And I was very thankful to know I have this support of which she is speaking. I could list many, many times I have asked for support or given it, but one event I’d like to share with you stands out foremost in my mind.
When Wil was 5 years old and entered kindergarten, it was a very overwhelming change for him, and thus for me. He garnered a new habit of crawling under the table and planting himself there when he didn’t want to do something, which was a lot. The teacher, paraprofessional and myself tried all sorts of tactics but nothing worked. I was at the edge of desperation when I called one of my friends from Down Syndrome Support Team. I cried, “He keeps crawling under the table and we don’t know how to get him out. I feel like he is going to spend his whole kindergarten year under the table!” Her response to this was to immediately start laughing, then she said, “Oh, is that all he is doing?”
My shoulders instantly relaxed and I surely let out a very audible sigh. She got it. She knew exactly what I was talking about. I thought I called her for a solution, but I realized what I really needed was someone who understood. I uttered two sentences and she innately understood the story and feelings behind those sentences. I didn’t have to preface anything, explain anything, define anything and best of all, not defend anything. The value of that fact is insurmountable.
We, of course, talked solutions on how to help Wil from his under-the-table manners. All of us at DSST have learned to be very creative in our approaches because what works one moment, may not work the very next. We made it through the rest of the kindergarten year with lessened under-the-table incidents, but then we had plop-down-on-the-floor incidents (still do) and all kinds of other fun things. I lean on my DSST friends for help, and they lean on me, and we will continue to do so in the years to come.
This kindergarten moment was an “ah-ha” time in my life. When I approached my friend for help, I thought I was seeking a solution to a problem. But that was secondary. What was most valuable is our connection in that we don’t have to explain Down syndrome to each other. In those two emotional sentences I shared, she knew exactly what I was saying. She knew the whole story without it having to be explained, justified or defended. As individual as each of our children are, and as broad as our emotions are that surround each of our children, deep down we understand one another. That type of bond, brought about by one tiny, extra copy of the 21st chromosome is more powerful and bonding than most any force in this world.
I believe our culture has trained our minds to need to know a concrete answer, and expect the easiest way to feel like everything will be ok. But after this experience, I see it is not that way at all. In fact, to live that way is a sure way to be constantly disappointed in this life. With these friends, with this bond, I’m so thankful to have been put on the path of the scenic route. It takes a little longer, it has many unpredictable twists and turns, and it has been made clear time and again there are no such things as concrete answers. I have learned to get creative and have faith the blessings will come. And when they do, they are never taken for granted but treated as the successes that they are. Life is so much more exciting that way with those little, unexpected blessings popping up just around the next curve.
As the woman said who has the young adult son with autism, I also believe Wil is blessed in all he does. I believe I am blessed to be his mom. In fact, I believe we all are blessed and share a deep inner connection. And that defies any explanation, justification or defense.
RISE UP FRIDAY!
We all experience bad hair days on occasion. Treasured are those that are there to help us turn them around into beautifying experiences.
RISE UP THURSDAY!
Silliness is absolutely underrated. It is indeed powerful in that in it’s essence it has no rules, no restrictions and is purely spontaneous. It is absolutely glorious in it’s rebellion of our mind’s boundaries and is true freedom of heart.
RISE UP WEDNESDAY!
A wrapped-up snuggle after a hot bath on a cold day is cozy-clean comfort medicine.
RISE UP TUESDAY!
Whatever the clouds decide to do, there are those that always seem to shine with the sun.
I absolutely cringe when I see a picture of kids with Ds holding up a bland, white piece of paper with, “I may not be perfect but I am happy” scrawled in black sharpie across it. I want to reach inside my computer and gently take that paper from the child’s hands, then roll it up and whap whoever wrote it over their head to knock some sense into them.
I can’t imagine simply describing Wil as happy. So singular, so one-dimensional. So blah. I must tell you, our life is much too dimensional to be wrapped up in “I am happy.” When Wil decides, in the middle of the post office parking lot, that he is not going inside and he’d rather sit down right there, “I am happy” is not exactly what is happening. Or, when we are in the grocery store and he feels tired, he will lay spread eagle right in the middle of the aisle. Wil was not happy. Though, when another shopper walked by and said, “That is exactly what I would rather be doing right now!” she made me feel happy. Or when there is a loud sudden noise, and Wil runs right for the nearest exit, he is not happy. On the other hand, when a beam of sunshine slants in our kitchen window, he will stop whatever he is doing, raise his arms to the sky, tilt his face toward the warmth of the beam and sigh, “Ahhhhhhhh!” Happy can not even begin to describe that kind of contented elation. Or when Wil lucks out with a chocolate donut treat, he languishes “mmmmmmm” the entire time he is eating it. If that is not pure perfection, I’m not sure what is.
And speaking of perfect, did it cross the minds of those who post these quotes that we are lacking a chromosome in relation to our friends with Ds? So who is calling whom imperfect again? And let’s get real, most of our imperfect moments are the most memorable of our lives. They are the times we look back and laugh at, or cry from, and almost always have grown from. Imperfections are what have molded us into who we are today and who we will continue to evolve into. Imperfections are what have drawn us closer to others, or set us out to blaze new trails. Imperfections kick us out of our complacency to do and try something different. Imperfections may not make life easier, but life is certainly more interesting and colorful for our imperfections.
So, in my opinion, if you are going to write a quote about life with Down syndrome, ditch the black sharpie, crumple up the white paper, and go straight for the paint brush and canvas. Get out all your colors and mix them up into a kaleidoscopic combination. Dip your brush in and get real artsy on that canvas. Layer it with squiggles and zig-zags and twists and turns and everything in-between. Because that is what life is after all. A multitude of unpredictable twists and turns with all kinds of colorful adventures in-between that some may view as imperfect, but when I look back on that canvas I can identify every turn and how we grew from it to go on to the next one. And always remember to color outside the lines of “happy” to where the “mmmmm’s” and “ahhhhh’s” live in their truest ethereal form.
'WIL'ingness = Willing to Embrace Extra in Life 