One Red Petunia

Halloween cropped

“Sometimes something can look beautiful just because it’s different in some way from the other things around it. One red petunia in a window box will look very beautiful if all the rest of them are white, and vice-versa.” Andy Warhol

Wil is a red petunia. He is beautiful in his differences.

I was helping out in Wil’s kindergarten class today.  While all the kids were in line to wash hands, I saw Wil talking to one of his classmates. The classmate gave Wil an awkward look.

This classmate didn’t understand what Wil was trying to say. Then, another classmate must have seen what was happening, and came over to help Wil get his point across.

Wil has this effect…he brings out the kindness and compassion in people.

I also see this every day when I meet him after school at the bus. There are kids who take turns sitting next to him, because they want to be with him.

Wil is an expert at finding the fun in things. Whether it be at his Music Together class, swimming lessons, school or other social occasions, though he can be a handful, he is quick to smile and find the best in things.

This attitude is infectious, and it’s a rare moment when I don’t see people smiling when they are with him. He simply has a way of making everything, and everyone, brighter.

Yes, Wil is a red petunia. He is a bright splash of color, that stands out beautifully with the companionship of others, at the same time drawing forward the brightness of those that stand around him.

——

~Have you had a red petunia experience? What was that like for you? What were the differing reactions?

No Excuses!

special olympics

Its amazing what can be accomplished when we kick our excuses to the curb.

Our excuses become so habitual, we don’t even realize we are making them….they have a subtle, but very effective voice.

If you’ve always wanted to accomplish something, no matter how big or small, but can’t seem to find the courage to do it, stop for a moment and do a “check in” with yourself.  You will find that excuses are what is holding you back.

Excuses are sneaky. They know exactly when and how to speak, so you don’t even realize they are there. When you do discover them, they are quite convincing of all the reasons you shouldn’t, wouldn’t, couldn’t.

Like a silver bullet to a werewolf’s heart, questions are the downfall of excuses.

Question their validity. Be relentless in your questioning, and you will find excuses are rarely based in fact.

Once you see excuses for what they are, tell them, See ya! Don’t let the door hit you on the way out!

You, my friend, free of that noisy nonsense in your head, can hear loud and clear, the exhilarating: I will, I can, I did!

Be well!

Christie

What if…?

Wil Basketball

Wil loves to play outside when he gets home from school. He doesn’t come inside for a snack. Its straight off the bus and onto his trike, or to blow bubbles, or to play basketball.

On Friday, he chose basketball. He grabbed the ball from the garage and went out to shoot hoops.

We have the hoop set at 7 feet. Wil takes the ball in both hands, squats down and holds it low between his knees, hefts up and…

SWOOSH! 2 points!!

We both celebrated and he does it again. Even in the midst of his success, he stops to give mommy a turn. If I miss, he encourages me to try again. When I make it, he jumps up and cheers.

I thought, Wil is going to love being part of a team sport and will be a great asset to that team. He wants success for others as much as he does for himself.

Then, I wondered how good Wil would be at basketball if he didn’t have Down syndrome.

I surprised myself with this thought, because I just don’t go there. But, I’m writing about this because I think it’s a very natural thing to do. We see our kids work so hard for things typically developing kids do with ease. In the midst of their struggles, to see them shine is a special thing, indeed.

Though these types of thoughts may crop up, it is very dangerous to follow their lead. The focus is not on the gifts of our children, but the limits of their diagnosis.

It’s not that I’m in denial that Wil has Down syndrome or that he has delays associated with that extra, little chromosome. Down syndrome is certainly part of his life, but it’s not who he is.

A child’s skills, or lack thereof, does not define who they are. Each child has their own personality, and the way they share and use their skills is as unique and special as who they are.

If my focus remained on Wil’s Down syndrome on the basketball court, I would miss seeing the thrill in his eyes over being on the court with his teammates, and only take note of how he doesn’t run down the court as quickly as his peers. I will see his shots, but I won’t fully rejoice in them, because my thoughts would be stuck in the “what if’s.” I wouldn’t fully appreciate how he cheers every teammate on with his whole being, and how he delights in every success. I wouldn’t feel the power of his unswayed spirit when his team loses, because he will be full of excitement for the next game.

That sure would be a lot to miss out on!

The best gift I can give Wil, and myself, is to keep my focus on Wil, and not the limits of a diagnosis. That way I can fully encourage and delight in Wil being the best of who he is as an individual. Sure, he may not shine in the same way other kids do, but because its his own way, he shines all the brighter.

If its working, its right

High five cropped

(Photo: Wil and his speech therapist since birth, Miss Theresa)

Oh, judgement. You would think us parents of kids with special needs would be the last to judge.

Aren’t we the ones who are always getting upset over people judging our kids and confining them to specific standards and stereotypes?

Many of us parents support each other, and I am eternally grateful for that. When I’m on the receiving end of support when I need it, it feels no less than as if someone spread out their wings and caught me as I fell off a cliff.

Yet, I also have been on the receiving end of judgement.

Don’t we moms of kids with special needs have enough on our plates without having to poke around on someone else’s?

I see this judgement flare up in the way we moms approach conflict. Some of us come in with both barrels ablazing, and some of us have a more subtle approach.

I employ the subtle approach. I will not stand in judgement of anyone else’s approach, but I will stand in defense of mine.

For some reason, there is this concept that subtle is not powerful. I have not found that to be the case at all.

I like my concerns and ideas to be heard, and I know others want the same. So I give a listening ear so I know where they are coming from, and I give my take, and we go from there. It may not be loud, but I’ve found this approach to be very effective.

Your way may not be mine, and mine may not be yours, but if its working, its right. If its not, change it.

We moms of kids with special needs should know this and respect this more than anyone.

All the best,

Christie

Is It Spring Yet?

Lambs Cropped

Its been a crazy spring here in Michigan…yesterday it was 70 degrees and today I’m watching big flakes of snow fall from the sky.

Most of us here in the mitten are more than ready to see winter go and are begging spring to stick around for more than a few days at a time.

As fickle and frustrating as season change can be, I’m thankful for the greater appreciation of nature it gives me.

I love to drive with my windows open and hear the birds and frogs chirping because they were silent all winter. I notice the tiniest buds on trees, because only a few days ago, the branches were barren and brown. Each time I walk outside, I’m energized by the fresh spring smell in the air.

Every season has its appealing points, and not so appealing points. Seeing snow today is frustrating, but when it is in the 60s tomorrow, it is going to feel like a slice of heaven after experiencing the frigid temps today.

Finding my way through season change is, in many ways, relateable to raising a child with special needs.

There are times when learning certain concepts are fairly easy, and times when concepts take time for my son to grasp. We have lots of stops and starts, just like the transition into a new season.

Right now, my son is having trouble understanding sequences. For example, his teacher will have a repeating pattern of a circle-square-triangle. In one of the patterns, the square will be missing, and he will be asked which shape is missing. He has not grasped this concept yet.

We keep slugging through, working, working, working, with no progress. But, I know that he will get it, so we keep moving forward, trying new ways and methods.

Just like the fickle weather, success will happen, but it will come when its ready.

But, I’ll tell you this…I now have a greater appreciation for every detail of success, no matter how small. And when he gets it, it feels like a slice of heaven.

All the best,

Christie

Making Memories

boat

(Wil and his Grandpa, busy making memories)

When Annette Funnicello passed away, I saw a TV interview with her famous companion, Frankie Avalon.

Part of the interview took place in Frankie’s basement, the walls and shelves completely covered with photos and relics from famous days past. It was nothing less than a shrine, worshipping a moment in time.

Watching, I felt a wave of sadness for Frankie.

Memories are powerful, and very personal. To have photos or relics of special memories is precious, indeed.

Reminiscing over times past with a dear friend, especially at their passing, is very comforting and healing. However, the sadness I felt for Frankie was that he appeared to be doing more than reminiscing. What I saw come over his face in this relic covered room, was that in his mind, these mementos represented the best days of his life.

His happiness was derived from living amongst these things, though their time had long passed. There was no desire to venture out of this room to create more memories. Why bother, how could they compare?

Whether what I perceived in Frankie’s face and demeanor was accurate or not, it made an impact on me.

I do not want to get stuck in time, no matter how adventurous and exciting the time was. As I move forward in this life, I will continue to hold past memories dear, and reserve a special place to honor them and take time to reminisce.  At the same time, I will be careful to leave lots of open wall and shelf space for mementos of new memories being made.

When my Maker comes to take me Home, I pray He won’t find me amongst my things. I pray He’ll give me the strength to use up all of my last breath while making my last new memory.

All the best,

Christie

Aside

Haircut from Hell a Blessing?

Wil haircut edited

Haircut from hell yesterday.

You’d think my son was in the dental chair the way he fought his haircut. I had  his beloved Yo Gabba Gabba music videos on my iphone for him as a distraction, yet none of them calmed him. Even the promise of his favorite vanilla ice cream at the Dairy Queen down the street was bringing any cooperation.

Fortunately, our hairstylist is a very patient and persistent woman. She managed to pull off a nice haircut despite Wil’s bobbing and turning head at her every attempt.

As Wil is getting older (he recently turned 6), he is increasingly testing the boundaries. As challenging as it is, I welcome this assertion.

This new drive to assert himself is a developmental milestone.  One thing I’ve learned raising Wil, is that no matter the behavior, a milestone is a milestone.

That doesn’t mean I allow him a no boundary existence. Like anyone, he needs boundaries to feel secure and do his best to thrive in our society. But, you better believe I am celebrating inside no matter how the milestone reveals itself.

When Wil was younger, he took a water bottle from the nightstand by my bed, twisted off the cap, and poured the entire contents on the bed. Though I wasn’t thrilled to have a sopping wet bed, inside I was cheering because it was the first time he used the fine motor skills that are very challenging for him to self-initiate twisting off a very small water bottle cap.

While Wil’s newly developed boundary testing assertion can be challenging at times, he now has increased motivation to use speech to express what he wants in his frustration, and to further increase back and forth speech exchanges with others.

This milestone is key in relieving Wil of the frustration of not being able to communicate his needs, and also for developing deeper relationships with others. Wil is a very social kid, and loves being engaged with others. This can only help him feel more connected to his friends, and his friends more connected to him.

Aside from that, I’m his mom. I so desire this back and forth communication with my son, that I know he is capable of. We are getting there, and though it may not be blossoming in the prettiest way, to witness the blossoming is no less a beautiful experience.

Its a precious gift to hear him share what is going on in that smart, reluctantly buzz cut head of his.

All the best,

Christie

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