To Those With the Gift

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There are some people who are just extra special, that have the “gift.” I am not one of them. At least in the sense of what I am speaking.

Today, we had an 8-year-old friend of Wil’s over. In the last 2 years, Wil has not been invited to a birthday party or a sleep over, yet I know very many kids his age are doing so.

I understand. I get it. I don’t say this to make anyone reading this feel a sense of guilt. It’s simply our reality.

I watched Wil play ball with a group of typically developing boys. They were so kind and patient with him. They encouraged him and included him fully. But when he grew tired of the game and walked off of his own will, I could see the sense of relief in the boys’ faces. They could just play. They did not have to be patient. They just played with others of their own level.

You may say, well, that is a good lesson for them, and yes, I would agree it is. But, really, they are 8 years old. They just want to play. Didn’t you? I know I did.

So today, when Wil’s 8-year-old friend, Lila, who asked for this play date with him came over, I was just as thrilled as Wil. She was not cajoled by her mother out of the act of kindness or charity, she simply out of her own will, like most typical 8-year-old kids, asked for a play date with someone they like.

I was also a little nervous. When she came over before, Wil’s two sisters were here. This little girl is smart. Very intelligent and very brave. She can easily hold her own with tight twin girls who are two years her senior. When you are 8, that 2 year difference is a big deal, but not for her. When Wil had his stubborn moments, he could have a break while she played with his sisters.

Not today.

Wil’s sisters were with their Grandma and Grandpa Taylor. A fun swimming and boating day with another 10-year-old friend an hour away.

The play date started off well, a new introduction to toys, then lunch, that part is easy for just about anyone. But, Wil does not speak the same level she does and he still loves Dora and Doc McStuffins. Kid stuff. Fine by her, we’ll just move on to something that doesn’t need an age limit. Let’s play Wil’s drums!

BOOM BANG CLING (oh, yeah, the cymbals, too). Out came the recorder, and whatever else I had in that music box. It was the happiest I’ve been as a mother of three in the midst of ear shattering noise.

Then it was off to the hose, and the slide that goes into the little pool. Splashing, spraying, laughing and squealing. Water is always equal playing ground. Until, Wil sat at the top of the ladder and wouldn’t budge.

I have seen similar instances to this at the park. Wil has very little control over his environment. Everything and everyone move so much faster than he does. So, what would you do if you felt you had little control over your environment? If you could sit at the top of the slide and make everyone wait, when they are usually moving at warp speed ahead of you, wouldn’t you delight in making them wait? Just a little bit? So, at the top of the slide Wil sat, un-budging.

At the park, I see two reactions. Kids either “mother” and sweet talk Wil, or they just wait until I come over and take care of the situation.
Not this girl. This girl has the gift.

“GO DOWN THE SLIDE WIL!” She says loud with authority.
He gives her a look, sees that she means it, and down he goes.
I love it! She called his bluff!

You see, there is this delicate balance between being mean, being enabling, and seeing where someone is simply being a stinker.

She saw stinker, and she called it, frank, to the point, and the next moment they are back to laughing and spraying each other with the hose.

It seems so simple, so typical, from the outside looking in. But, I’m on the inside now, and Wil is just not treated in that typical way, because, well, in some ways, he’s not typical, and people just don’t know what to do with that. So when I see something like this, I see it for the gift that it is.

I’ve heard it said that everyone should have a child with special needs. And, I know exactly what the author was talking about.

How do you appreciate something like day so completely? How can a ride down the slide have so much meaning? How can a simple play date fill you so fully?

I was not born with the “gift.” And, I think, that is exactly why I believe I was gifted Wil. I would have missed so much without him.

~This post is dedicated to those of you who have “the gift” …you know who you are, and I am so very thankful for you! And, for those of you, like me, that do not have it, there is still hope, if we simply pay attention and learn from those who have it. Life is so very much brighter that way.

Quarter Inch Cuts of Paper

When Wil was a baby, I proclaimed, in unison with many other new parents of babies with special needs, No one will limit my child! The SKY is the limit!

I see these, and many other similar statements, from new moms on Down syndrome social media pages. It is almost 9 years later, and I’m still cheering right along with them, but I know, as time marches on, so do the meanings behind these proclamations.

When Wil was a baby, though he was lagging behind in some areas, he hit many age-appropriate milestones. My proclamation remained the same. Wil is going to reach great heights!

He had amazing support in his Early On and pre-school years through his service coordinator, teachers and therapists. Communication between these professionals and myself was free flowing, and any speed bumps in Wil’s development were quickly addressed. We made it through those years with shining colors.

Sky’s the limit!

Next was grade school. I was nervous for Wil to leave our comfortable pre-school nucleus. The teachers, therapists and I were all squeezed into a room, paper and pen in hand, projector alight with IEP forms reflected on the large screen hanging from the ceiling. Form by form, we went through all of his current achievements and set new goals, accordingly. No surprises, all was going well, until a test score revealed that my 5-year-old son had scored at a 6-month level in fine motor skills. I could not stop the tears.

The sky just dropped a little.

I was very aware that Wil struggled with his fine motor skills, but that reality still hit me like a ton of bricks. I was reassured that the way the test was designed, it did not register many of the “emerging” skills Wil had, and that is why the pre-school therapist was there to pass on her knowledge and notes to the grade school occupational therapist.

This grade school occupational therapist took the proverbial bull by the horns (Wil can be darn stubborn when he doesn’t want to do something), and got to work on one of Wil’s weakest skills, cutting with scissors.

She tried everything! Specially-designed scissors, hand over hand, rewards of bubbles (Wil’s favorite), and much more, all while keeping me in the cutting loop so we could reinforce at home. Wil struggled for a long time to accomplish the pinscher grasp, so pushing his fingers together with the resistance of scissors between them was no easy task.

He simply did not have the control to hold those scissors straight, and so they would topple and crimp the paper. We had crimped paper all over! Wil got to the point of hating scissors, and admittedly, so did I!

Again and again, again and again, we would try, and his occupational therapist continued to work her tough-love magic. Then one day, Wil just got it like he’d been doing it every day.
Oh, happy, happy day!

We’ve had many such stops and starts as Wil has made it now through 2nd grade. He continues to have wonderful friends, excellent support through the schools and through our Ds support team. Yet, as he grows older, there is no denying the growing gap between himself and his peers.

I know there will be many changes and stops and starts in the years to come. I still proclaim the sky is the limit, just like I did when he was a baby, but there is a much different meaning behind that statement today. Though I still look ahead to the future, I know now, that the sky is not touched in broad, sweeping statements, rather, the sky is touched in 1/4 inch cuts of paper.

Makin’ it Happen

I woke up this AM without that usual get-up-and-go. I looked out the window and there was a heavy fog, the perfect excuse to feel sluggish and let the day happen to me.

I lead-foot it into the kitchen, thoughtlessly pour grounds into the coffee maker, and then, I go straight to the drug I know I must take to infuse some energy into this soul.

I look at them all splayed out in front of me without much emotion. I have many, in varying colors and sizes, and I randomly note how some of the smallest can pack the biggest punch. But, right now, I really don’t have much of a preference, I just know I need one now, so I quickly make a choice, and plop down in a chair with it.

I open it randomly, and look down to see my usual underlines, starred passages and earmarks on the pages. My mind is still a blank. I glance over at the coffee pot. Why didn’t I fill that stupid thing last night? This is going to take F O R E V E R!

I look back down, and start to read, with not even an ounce of enthusiasm. The only thing that doesn’t stop me from reading is the fact that I’ve been in this place before. I know what my day will be like if I stop now, so I give it some time. As I read on, I start to feel it, the smallest spark starts to make itself known.

Soon, that spark builds, expands, and in a short time these words are not just letters on a page. They are emotions, images and feelings! I may have read these verses over and again, yet their fire never fades. I allow the energy to course through my veins and penetrate that stubborn brain of mine, diffusing the withering thoughts. The world needs me to be an empowering light, not a selfish slug so easily affected by all that is around me. I am filled with enthusiasm and I haven’t even been caffeinated yet!

Oh, yeah, coffee! I glance over, and the pot is completely full. I realize it has probably been sitting that way, unnoticed, for quite some time, when it seems only seconds ago it was a frustrating, eternal drip.

I bounce over, grab my favorite mug, pour myself a divine cup of that lustrous, ebony brew full to the very tip-top, and savor that first sip right on the spot.

I saunter back over, coffee mug in hand, sit back down with my book, and set that steamy cup right next to it, filled with contentment.

Outside my kitchen window, the fog has lifted and the day has brightened. Time will progress and unfold in it’s many predictable and unpredictable ways, as is it’s nature to do so.

And, as for me, well, I am ready to happen in my very blessed way right along with it.

tea time

Oh, Did You Say Something About An Apostrophe? Sorry, I Was Too Busy Washing Underwear.

Wil & Ivy

Sometimes I get really frustrated with the special needs community, including myself.

Let me preface that statement with the fact that I LOVE and COMPLETELY ADORE the people of DSST. They are my tribe, my people. They are overflowing with awesomeness and will stop whatever they are doing to laugh with me, cry with me, and walk me through any situation, and I am fully present to do the same for every single one of them.

Ok, that said, let’s get down to business.

I just saw an article with the subject about whether or not Downs(as in, Downs syndrome) needs or does not need an apostrophe, and I’m over here, like, my kid has been pooping his pants for the last month, we have no idea why. Is it constipation, is it nervousness, is it nutrition, and so tell me why the heck am I supposed to care where someone places their apostrophe in the word Down syndrome again? ….http://christieleightaylor.com/oh-did-you-say-something-about-an-apostrophe-sorry-i-was-too-busy-washing-underwear/

Friends Keep Your Heart Light

I was struggling with overload last night, and again this morning. Try as I might to pinpoint the source, so I could address it, it just wasn’t coming. I was a stressful blank….http://christieleightaylor.com/friends-keep-your-heart-light/

Wil Calendar 2008 004

She is…Kaleidoscopic

I am driving,
she sits next to me,
the same as every Tuesday….

http://christieleightaylor.com/she-is-kaleidoscopic/

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Moms around the table

There is a small group of moms sitting together at a local restaurant. They are sipping on a cool drink, it’s an unusually warm day for early May in Michigan…http://christieleightaylor.com/moms-around-the-table/

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