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

The Parent-Conditioning Effect

dryer

It seems on daily basis I’m reminded of how much my kids have conditioned me.

I’ve read quite a few parenting books, but I’ve never come across the Parent-Conditioning Effect.

The parenting books focus on how we are to guide and respond to our kids, but not on how they change us.

There are many valuable books out there, with helpful guidelines and techniques.  However, I have to chuckle at the books that say, if Johnny does A, then respond with B, and Johnny will react with C.

Everything usually goes by the book with A and B, but unless little Johnny lives his life straight off the pages of a textbook, good luck seeing a predictable C response.

In my experience, I did have the luck of glimpsing a C response, but, I’ve also received an X, and on another day, Q. That Q is a toughy, still trying to figure out how to handle that one. But, as soon as I do, Z will be the reaction of the day.

This multitude of reactions was very hard on me at first. I had to go through a bootcamp of sorts to get this uptight, textbook child idea out of my head. I have to hand it to my kids…they had a tough job ahead of them, but they went at it full force to relieve me of my delusions.

First, my beautiful twin girls decided to leave their comfy place in my tummy early and had a 2 1/2 week stay in the hospital. After they came home, they both had colic, trouble eating and sleeping.  As hard as this diligent, baby book reading mom followed the rules, the twins each had their own way of following, or breaking, them.

My mom came to our home frequently to help my husband and I with the twins.  She and I read the parenting book and followed the book’s routine of eat, play, sleep. When it was time for sleep, we carefully swaddled the little ones, and laid them down in their crib.

Ahhh, time for my mom and I to enjoy a much needed cup of coffee.

WAAAAAAA!!

That sound drives daggers into a new mom’s heart.  Still, I knew, especially being preemies, how important the girls’ sleep was. So, my mom and I waited the recommended amount of time before going in to soothe them.

One of the girls had fallen asleep, just like the book said she would. The other was wide awake and very unhappy. Even with all her crying, her sister lay unfazed, sleeping peacefully.

I soothed my upset girl, and once she was comfortable, laid her back in bed. Finally, she slept.

I swear twins are born with an inner sense of each other’s clockwork, because as soon as one was asleep, her sister was up crying. This back and forth went on for days. My mom and I were following the book by the letter, keeping the twin’s eating and play times in perfect sync, but they continued to sleep and wake at different times.

In sleep-deprived desperation, I went to reference the book again, in hopes of  finding anything I could have overlooked. I could not find the book and asked my mom if she knew where it was. My mom replied, “If you find that book, burn it!”

We decided to go rogue. My mom called her fellow grandma friends who had helped with their grandtwins. Gotta love grandmas, they come from the parenting school of “whatever works.”

One grandma had a miracle solution:  put the twin’s car seats in their crib, and buckle them in.

We were desperate enough to try it, and the twins slept 6 hours straight! They are almost 8 years old now, and I remember that success like it was yesterday.

After this new mom adventure, I realized that though parenting books are helpful in a lot of ways, my kids are not textbook children. Even with the same guidance and direction, each child is going to respond in their own individual way.

This lesson was very valuable when their brother, Wil, was born 19 months later.  Wil has Down syndrome, and has some cognitive and physical delays. I have read many books on Down syndrome which have been extremely helpful in providing for his care. Yet, as with his sisters, Wil does not live off the pages of a textbook.

In the developmental milestone books, they state that children learn the skill of walking before they have the ability to put one foot directly in front of the other. Tell that to Wil, as he stealthy put one foot in front of the other on a balance beam, with only my hand holding his as support, before he learned to walk.

I like to think of the Parent-Conditioning Effect like the conditioning done in exercise. It is painful at first, but we get stronger and more confident as we go, and even though there are general exercises that work for all, we learn which exercises work best for our individual needs.

And just like in exercise, no matter how fit we are, there are some days we feel stronger than others.

Ahh, but that is the beauty of not being a textbook mom with textbook kids. We have good days and bad days, we learn from them, have some more, and learn some more.  So, while I am thankful to all the books for their wisdom and guidance, real life is still my most valuable teacher.

All the best,

Christie

Your Face Value

sunglasses

I was shopping with Wil and his sister, Elizabeth, today. When we are out in public like this, it’s very evident how people pause when they see Wil, but not when they see Elizabeth, or his other sister, Katherine.

In witnessing these pauses over time, I’ve recognized a few different types:

1. The pause with a stare. It’s practically written on their forehead: “Does he?” Once they satisfy their question, on they go.

2. The long look at Wil then a sympathetic glance at me that speaks, “oh, that poor, little boy has Down syndrome. I’m sorry, mom.”

3. The look at Wil, then a big smile spreads across their face, and they lift their head to look me in the eye with this smile still on their face. I can read “he is adorable” written across their forehead.

Of course, #3 is my favorite. They get it. They see Wil as the adorable boy that he is.

#1 and #2 tick me off. It’s not the curiosity that is the problem. Or, that not everyone is going to find Wil as adorable as I do. What gets under my skin is they are seeing Down syndrome, but not a child.

If the #1 people saw a child, they wouldn’t shy away. If the #2 people saw a child, they would see no need for sympathy.

Of course, Wil does have Down syndrome, and he has certain Ds traits, and he does some things a little differently than his typically developing sisters do. However, Ds does not make him any less of a child than his sisters are.

Once people start seeing Wil as a boy first, that is when he will be valued for who he is, and what he has to offer. If he is seen with Ds first, all people will see are his limitations.

Please, if you have found yourself in #1 or #2, I have one simple request. See all kids as kids. If you have found yourself in #3, bless you.

All the best,

Christie

Lift Me Up

Wil Calendar 2008 003

Last night, I went to our Down syndrome support group’s Moms Night Out.

As I sat there amongst these women, I thought, this should be called a “lift me up” group rather than a support group.

Certainly, this group offers much support, but when I think of support, I think of being held up so I don’t fall. Not a single one of these women was falling.

Here were all these moms together, raising a child with Ds day-to-day.  We come from different backgrounds, have different ages and numbers of children, some of us work outside of the home full-time, some part-time, some work fully from home. We are an eclectic mix of women brought together by an extra chromosome.

Yet, with all our differences, the atmosphere around the table was the same. There was laughter, sharing of stories, and camaraderie. Sure, some challenges came up, but there were knowing nods of agreement. The nod that says, “hey, I get it and we all are in this together” is like the best hug in the world.

Other than the gift of Wil himself, his extra chromosome has brought so many extras in my life, and these women are one beautiful extra I’m thankful for.

It is said  “it takes a village,” and I am lucky enough to be part of a village made of these caring, strong and proactive women. There is strength in knowing we are all in this together, cheering our kids on to live fulfilling lives and to shatter the limiting stereotypes.

There are still too many people out there that just “don’t get it.” As much as individuals with Ds are now self-advocating and achieving, people still limit our kids by throwing out the word retard, and put limiting thoughts and words on what they believe our kids can achieve into adulthood.

Listen to me closely, our children look up to the same sky as any other child does, and that sky is their limit just as it is for any other child.

Our kids may not reach the sky in the same way as other kids, but they can and will reach it if we stop limiting them with our thoughts and words.

There is a young man with Ds named Tim, who with his parents, runs a successful restaurant. The key to the restaurant’s success: Tim gives the patrons hugs. People come from all over to get a hug from him. He does help with other duties at the restaurant, but my point is, in his own way, he has made this restaurant a success. Tim and his parents are “no limit” thinkers.

All of us are limitless, we simply reach the sky in our own way and in our own time.

Keep the limits from your mind and your words, to benefit yourself, and to benefit those around you.

All the best,

Christie

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