A Whisper in Time

2007_1229Fallwinter070064Last night, at 10pm, everyone was sleeping, Elizabeth and I were still awake on the couch, and she was reading me passages from her Warriors book. At times, she would pause in her reading, lean over, and whisper some of the backstory in my ear, then sit back up and continue reading to me again.

Elizabeth is going into 5th grade this year, and that means middle school in Manchester. She won’t be reading like this to me for much longer, and if she does, that little whisper of a backstory will be the first to go. It is the last whisper of her elementary school youth.

Sometimes, I have these little fantasies of going back in a time machine, punching in a specific day and time, or just flying random, and arriving, for just a moment, to squeeze those chubby legs again, and hold their little rolly polly giggling bodies, and feel their warm, soft hair on the side of my cheek, and be able to kiss a boo-boo away, then come right back to my present, because I don’t want to miss that either. But, the only time machine I own right now is my memory, so I will continue on with my very own mental time travel for the time being.

So, right now, I will hold on to the whisper. And, I will feel both happy and sad about it. Happy, because it is my very own now to enjoy to the fullest, and sad, because all to soon, it will be another memory to visit. Yet, in that way, I find sadness a very beautiful emotion indeed.

A Coke, A Hug, and A Smile

Beckie and Wil

Monday night, I was talking with one of my friends who is a skilled nurse, and many of her patients struggle with mental illness. Upon entering the room of one new patient, she found the woman on her bed, sobbing uncontrollably. When my friend calmed her down enough to inquire what the problem was, the poor woman blurted out, “Someone took my Coke away! All I wanted was a Coke with crushed ice!”

My friend made her way down the hall, and returned with a nice cold, fizzing drink filled with crushed ice. The woman stopped crying immediately and thanked her profusely.

“A Coke with crushed ice is her world right now,” my friend explained.

I do not understand this woman’s mental illness like my friend does, I have neither the training nor the experience, but I do understand what a diagnosis does to you. I have felt how it pulls the rug hard and fast from under your feet, and leaves you suspended in time, a whirl of scientific terms and statistics closing in on you. Your world has instantly been de-humanized, and you crave something that gives you comfort, some human understanding, in this too close and confusing place. And then, someone takes your freaking Coke with crushed ice away? What the hell?

I have a dear friend who recently went through a deep depression. I had never seen her like this, and I was really scared for her well-being. I sat with her and listened to her long-buried struggles bubbling to the surface, and how terrifying and difficult it was to make her way through them. I felt so ill equipped to help her, but I didn’t want to burden her anymore than she already was by asking what she needed from me, so I was there for her in person as much as I could be. Finally, I admitted to her that where she was scared me, and I wanted to help her any way I could, so please tell me, how can I be there for you in the way you need?

And, she said, just be you, that is enough.

Whenever anyone asks me about how I felt when Wil was diagnosed with Down syndrome, it’s like I have this internal zoom lens that beams me back to the day he was born, with his 7 lb body wrapped tight in a white hospital blanket with a thick blue and pink stripe, laid upon my chest covered in a thin, dull white hospital gown, with little faded blue patterns. The internal camera zooms further still, and rests in a full close-up of his eyes. Those big, blue almond shaped eyes.

So many people did not know what to say at that time. Heck, I didn’t know what to say. Then, my girlfriend Kelly, who I called up shortly after Wil was born, and sobbed into the phone that he had Down syndrome, asked me, “Well, how much does he weigh?”

What a refreshingly normal question! In that one question, I felt a sense of normalcy and of community, two things I had been sorely missing in those tight four hospital walls. I am sure my emotions at that time were not much different than the woman who was delivered that sparkling Coke with crushed ice that had so recently been taken from her.

So, when my dear friend struggling with depression answered my question of how I could help, by saying she only needed me to be me, that was enough, I fully understood. I needed no further explanation.

I think, many times, when we want so desperately to help a friend struggling with a diagnosis, it’s easy to get caught in the trap of thinking we need to do or say something extra special, when what they really need is the normalcy we bring with us, and a comforting sense of community.

And, if she cries out for a Coke and crushed ice, for pete’s sake don’t question it, be a friend and get her one, and deliver that Coke with a hug and smile. A friend deserves nothing less.

Travelling Light

Yesterday, Wil and I went for a ride to the vet with the kitties. He sat in the car with their carrier perched on his lap, talking to the kittens through the vents, their purr boxes motoring strong.

When we arrived at the vet’s office and got out of the car, Wil was insistent on holding the carrier, though it was too heavy for him. So, I walked, slightly bent over, my hand on the handle with his, the carrier softly bumping back and forth between us as we made our way to the door.

“I’m carrying the kitties!”

“Yes you are, big boy!”

We were not moving fast, and soon a man, his son and two dogs were behind us, and followed us through the door. One of the dogs barked.

Wil immediately dropped his grip on the carrier, covered his ears, and went to a corner of the room and plopped down on the floor.

Dang, I don’t have Wil’s ear protectors. Mental note: order an extra pair to always keep in the car for unanticipated times like these.

When Wil gets upset like this, it can be difficult to talk him back from it. This plop down on the floor way of his is a hot topic amongst those of us in our Down syndrome support group. As individual and unique in personality each of our kids is, many of our kids share this floor dropping commonality.

The world moves really fast for our kids. They are always trying to keep up, and sometimes, well, they just get upset and need everything to stop. I’ve learned lots of techniques from other moms in the group that help. Like anything, some things work sometimes, but not all things work all of the time.

Last Friday, we were at Elizabeth’s final day of basketball camp for a brief ceremony. It was very loud, and Wil was having none of it. It was a struggle to keep him in the room for the ceremony, but Elizabeth wanted me there to watch her, and I wanted to be there for her. Sitting on the floor of the basketball court, I held Wil in my lap tight, rocking him, trying to comfort him, but all he wanted was to be out of there. Shortly after the ceremony, Katherine offered to watch Wil in the lobby. Other kids had moved in there to play. Those two walked off together, and I started to relax and enjoyed chatting with the other moms while watching Elizabeth and their girls run around from place to place in the gym, getting their new t-shirts and basketballs autographed by the coaches and players of the camp.

Then, Katherine ran into the room and said she thinks Wil had followed some people outside.

I shot through the door and looked around, no one. My friends, just seeing my face, knew what was up and started their own search. My mind went in a thousand places in those few seconds, where he might have run to, how fast he could get to the street, maybe he ran straight to our car and climbed in, he’s done that before, how are we going to survive the rest of the summer activities if this hypervigilance with Wil is required each time. His running off tendencies had dramatically decreased as he has gotten older, because I can reason with him more so he understands the dangers, but when he gets upset, sometimes, there is just no reasoning with him.

My friend Tracey called out to me she had spotted Wil. He did not go outside, in fact, he was on a basketball court happily dribbling a ball with another boy. Huge sigh of relief from all of us.

I watched him bounce, and laugh, and enjoy this time, where only seconds ago he was so very upset. The room was quieter, now, and he felt free.

The very next day after this basketball camp, we would have a full day at Katherine’s outdoor taekwondo testing, and I knew the length of it would be difficult for Wil. It would be loud, it would be long, so I brought along his ear protectors and snacks and knew there would be a small playground for him to enjoy.

Katherine’s day of testing went much better than Elizabeth’s ceremony. Wil happily played on the slides and swings adjacent to the testing area, all sounds muted by his ear protectors, and when it came time for Katherine to test, my friends quickly offered to keep an eye on him on the playground while I watched and videoed Katherine. Later, when it was time for the potluck lunch, one of Katherine’s instructors came over and offered to take Wil through the food line and help fill his plate, did he want a hamburger or hot dog?

Back at the vet, they sent us into a room right away. I assured Wil it would be quiet in there, so we walked in, his hands still over his ears. Once inside, he visibly relaxed, we let the kitties out of their carrier, they started exploring, Wil followed them around, and everything was A-ok.

After the kitties 2 shots and a clean bill of health, Wil and I left that quiet, friendly little room and went back out to the lobby to the check-out counter. I only needed to make a follow-up appointment for a second set of shots and for the kitties to be spayed. Wil’s hands quickly went back over his ears, and he plopped down on the floor by the wall. I’ll make this quick, I thought, and we’ll be out of here.

It was not to be.

The woman at the check-out was not un-friendly, but just a bit on the terse side. I smiled at her, and explained what we needed appointments for.

“Oh, you need to have those shots within 4 weeks, and the cats also need blood tests before they can get spayed,” she informed me.

The tech came up and told her we didn’t need one of the shots, the vet had waived it, and for some reason, that made her somewhat upset. Maybe those 2 just don’t like each other, I don’t know. All I knew was I needed to get this done and move on.

We got back to coordinating appointments, and another tech who was walking by came over and crouched down next to the carrier and was talking sweetly to the kitties. She saw Wil was upset and was trying to engage him, but he wasn’t feeling much like talking.

I could see he was about to make a run for the door, so I said to the woman at the desk, “My son is having a difficult time right now. Please mail me today’s bill, and I will call you about setting up these appointments.”

“No,” she said, “I cannot mail you the bill, it’s against policy.”

“I’ve been mailed the bill before, it hasn’t been a problem. I’m sorry, see my son over there. He is very uncomfortable and I need to settle this quickly.”

Wil jumped up and headed for the door. I ran over and caught his arm just as he was going out.

I heard the woman who had been crouched by the kitties, kindly say, “It’s ok, you can mail her the bill.”

“Thank you,” I said, and I ran back, grabbed the carrier, then caught up to Wil and took his hand, as I heard the woman at the check-out call out behind me, “I’m sorry, they’ve just changed all of the policies.”

Driving home, I looked over at Wil in his seat, carrier again perched on his lap, and he was happily singing to the cats and they purred back.

I guess I could be mad at that woman behind the desk, but I’m not. I think she genuinely felt bad at the end, and I believe life taught her a lesson more than any words I could have said to her. I understand the need for the office’s rules and policies, but we can surely be more sensitive to people’s needs at the same time. They do not have to be mutually exclusive. There is always room for adaptation, but people can easily overlook that fact.

When you have a child with special needs, you learn a heckuva lot about adaptation. You live and breathe adaptation. Your child simply does not fit within the boundaries of all of those rules and policies.

I can almost guarantee you are going to have battles with bigger institutions that rely heavily on rules, that somewhere along the way, forgot the people factor. You will butt heads with educators and program directors, and have multiple tiny instances like we did at the vet today, and learn that you now must always carry a set of ear protectors.

As you walk your way through all of the rules and the policies and the unpredictabilities, there are always angels. They appear just at the right time to help guide you through the maze of those big institutions, when you feel you can bang your head against their heavy walls no more. Or angels may appear as the friend, who can read the look on your face without needing say a word, and runs off to find your child like he was her own, and you breath a sigh of relief right next to her when he is found. Angels show up in the potluck line when you are juggling 3 kids, and gently take a plate and ask, hamburgers or hot dogs? They also appear as a crouching vet tech, who’s example opened the eyes of a policy-blind worker.

When the weight seems too heavy, the angels are always there to place their hand right next to yours, the weight softly bumping back and forth between you, as you make your way forward.Wil cats carrier

To Those With the Gift

FullSizeRender
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/

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