Jellybean Therapy

There I stood perusing the aisles at my local Wal-mart store, waiting for my prescription from the pharmacy. It is truly amazing how you can simply walk into a store with a list of only one or two items and somehow manage to come out with an entire shopping cart filled to the brim with items that you didn’t even know you needed! At least my daughter is not with me today, and I won’t have to worry about her putting items in the cart or having a melt-down because she wanted a wind-up toy, even though she had three just like it at home.

I gazed down at the half crumpled list in my hand: toothpaste, kitchen trash bags, salad dressing, and a birthday card for my mother. The list was pretty short, but the items I needed where scattered in each corner of the store. I was on a mission to gather each of the items from my list without filling my cart. In fact, I didn’t even grab a cart. My strategy was not only simple but frugal! Get in, stick to the list and get out. My problem, I had a half-hour to kill.

I felt like I was entering shark infested waters. Every aisle and every corner held a temptation. The store was decked out in all its Easter best. Everywhere I looked there were little, stuffed bunny rabbits, cadbury eggs, colorful Easter grass, and candy!

The sharks started circling as I headed for the toothpaste. A large, green frog peered at me from over the display at the end of the aisle. “Now, let’s see, which toothpaste will make my teeth the whitest”. I knew exactly which toothpaste I wanted, but I was trying to distract myself from the imaginary sounds coming from the end of the row. What was it saying? “Bud…Weis…er…” NO, that wasn’t it!! I heard, “BUY…. ME…. NOW”.

I grabbed the toothpaste and made a mad dash to the back of store to locate the kitchen trash bags. I had to pass through the electronics department with that large tub of $5 movies. My heart was pounding as I got closer to the sales tub. Oh boy, right there on top of the stack was Robin Hood starring Kevin Cosner. I love Keven Costner, especially in those green leotards. I deployed my diversion by switching the toothpaste back and forth between my hands narrowly squeaking by the display. As I took a deep breath and moved ahead I could swear I heard Kevin say, “I would dye for you”. I checked my phone, I still had 20 minutes until my prescription would be ready. ugh!

I found the extra-ply, heavy duty, lightly scented trash bags with the super-strong draw string handles and made my way to the condiment aisle. Oh dear, they are having a sale on brownie mix. My mouth started watering. The sweet smell of chocolaty, moist, luscious brownies filled my nostrils. Wait! That is a sales tactic! That smell is coming from the bakery located just a few rows away. “Pull it together”, I hear my self say.

Here we are, the condiment aisle.

Seriously! Why are there so many salad dressings to choose from? At least I knew I could waste 10 minutes reading the labels to determine which one would help me live longer. I finally decided on 16 oz. bottle of Hidden Valley creamy ranch dressing. There is something about that name that is enticing. I wonder if I could go visit Hidden Valley?

I checked my phone, 10 minutes left until my script would be ready.

I took a pen out of my purse and crossed the items off my list one by one; toothpaste – check, trash bags – check, salad dressing – check. The last item on my list was a birthday card for my mother. I think I might be in the clear. I know I will have to pick up at least 10 cards until I find the one that is just right. I know this will take me at least 10 minutes.

I think I’ll just cut through the women’s department. It will be quicker than fighting the crowds at the front of the store. Oh look! They have the cutest rain jackets! Spring is just a few weeks away and that means April showers. I could really use a rain jacket. I mean, that’s not really an impulse buy, right? It is something that is practical.

STICK TO THE LIST! my conscious beats me over the head. I keep moving and without even thinking about it I start humming…”I’m singing in the rain, I’m singing in the rain, what a glorious feeling….”

Finally, my last stop, the card section.

This one is too happy, this one it too plain, this one is not appropriate, yikes! This one… sniff, sniff… this one is just right. I balance the four items in my arms as I make my way to the pharmacy. I get up to the counter and know I am in the clear. I take a deep sigh! “What? I can’t pay for my other items here?” “I have to go to the front check out?” Oh boy, this is the biggest hurdle the check out counter!!! gulp

I grab my prescription, put my blinders on, and swim through the crowd to the front check out counter. I think I hear the music from Jaws, duunnn dunnn… duuuunnnn duun… duuunnnnnnnn dun dun dun dun dun dun dun dun dun dun dunnnnnnnnnnn dunnnn!!! Hershey bars, Reese Cups, gum, magazines, finger nail polish, miniature flashlights, argh!!

I place each of my items on the conveyor belt: toothpaste, trash bags, ranch dressing, birthday card. The clerk asks, “Will that be everything?” I can feel the beads of sweat forming across my forehead as I stare back her blankly. Will that be everything?? She is trying to get me to buy more! I take a deep breath and commonly reply, “Yes, that will be everything, thank you”. I did it! I really did it!! I think to myself.

Then the clerk deploys her final move as she reaches into the display basket at the end of the checkout counter, “We are running a special on jelly beans. They are only a dollar”. “Would you like to add a bag to your order?”

I grab my purchases and quickly make my way to the safe haven of my vehicle before a girl scout peddling cookies can tackle me. I place my bag of items in the seat next me and put the keys in the ignition. I take a deep breath and sigh. I never knew going to the store was so stressful. As I back out my parking space the sweet, tangy taste of tangerine orange fills my mouth instantly calming my nerves.

Hey, I did go to Wal-mart to pick up my prescription which just happened to include a bag of therapeutic jelly beans.

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Right to Read Week with a View from the Little Red Caboose

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This week kicked off Right to Read month. Therefore, I thought it only fitting to write about the importance of reading to children. I remember my mother reading to me all the time. In fact, I still have many of the books from my childhood. She started reading Little Golden Books which included titles like The Poky Little Puppy, Tuffy the Tugboat, and The Monster at The End of This Book. She then graduated to Dr. Seuss books with some of my favorites like The Foot Book, Would You Put Me in the Zoo, and Green Eggs and Ham. She even sprinkled in a good dose of word and letter games that we played every time we went anywhere in the car.
My mother was not only a school teacher, but also an avid reader. She had hundreds of books that she read and then proudly displayed on the bookshelves that lined the walls of our basement. I remember perusing through a shelf of books one day and discovering an amazing set of dusty, old OZ books and the whole Nancy Drew series, which I devoured in less than a few months. All of the books were ones my mother had read as a child and like treasures she had hung onto each and every one of them. If you were to enter my office today you would find wall to wall bookshelves lined with titles from her childhood and mine.
Through each new adventure I discovered that words were life. I remember when I got the “writing bug”. My first grade teacher, Miss Geyer, gave us an assignment to write about an inanimate object with life like qualities. I wrote about a tube of toothpaste. I actually wrote the story from the perspective of the toothpaste. I was hooked! It was amazing the power those words had on the page. My words had power! I still have that original copy of that simple story about being a tube of toothpaste. Somehow I learned very early in life the power of the written word and I knew that words would unlock the world for me.
I have read hundreds of books in my life, but my favorite book is from my childhood. In fact, it has a special place on top of the bookshelf in my office. I made a connection to the book even as a small child. I was the youngest of three siblings and often tried very hard to keep up with my big brother and sister. I was often discouraged that I couldn’t do all the things that they could do. My brother was a great athlete and musician, and everything just came so easily for my sister. Just like the Paul Detlefsen train lithograph that hung in my family’s living room I was simply a caboose at the end of the train, always last, that couldn’t do anything but be pulled along.
One night while tucking me in bed my mother read a book that I have never forgotten. The title of the book was The Little Red Caboose written by Marian Potter. The story was all about a big, strong engine who pulled the train and a coal car in the middle that helped fuel the train. When she came to the part in the story about the little red caboose who was always last and felt like he wasn’t important I was mesmerized. The little red caboose wanted so much to be an engine or a coal car just like me.
However, one day the train couldn’t make it up the mountain and started to slip back down the hill. The little red caboose slammed on his breaks and held tight to the tracks preventing the train from sliding down the mountain until help arrived. My mom told me that I was a little red caboose that provided support by always encouraging others. She told me that I was her bright spot at the end of train. From that day on my family started calling me the little, red caboose.
I can still remember getting excited as a child when we had to stop at a railroad crossing. I would always be on the look-out for a friendly wave from the man wearing a funny looking hat riding on the caboose. I truly believed that we were kindred spirits, providing a smile, a wave, or words of encouragement to others along our journey.
I came to realize that my strength was within me. I wasn’t designed to be an engine or a coal car, but rather a little, red caboose with a lot of spunk! That simple book from my childhood taught me an important life lesson that continues to be as important to me today as it was over forty years ago. It is a lesson I have tried to convey to each of the children I have taught over the years. I think Ralph Waldo Emerson said it best.” What lies behind us and what lies before us are tiny matters compared to what lies within us”.
With the advances in technology and cost cutting measures the little red caboose has all but disappeared from the American landscape. Although I understand the importance of advancement and rigorous standards we mustn’t forget the value in the little things that can make the biggest difference.
The face of education is chugging along at a rapid pace with assessments, core standards, and effectiveness measures. Sometimes as educational leaders we lose our perspective. We are so focused on wanting to be the big, strong engine we forget to check in with the man in the caboose for problems along the track. Perhaps we need help to stop, not so that we can get off the train, but rather so we can take a moment to check our perspective.
My job as a lifelong educator is to keep children on the right track by helping them discover the magic of words, thereby inspiring them to believe that anything is possible. From my cupola I have spotted signs of trouble for hundreds of children who have struggled while learning to read, and I have helped them over their mountain.
The words from a simple children’s book opened the world for me and changed my perspective. I want to challenge you, regardless of your career or walk in life, to stop the train you are on and take the time to read a book to a child. You never know, you might like the view from the little red caboose.

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Perspective Is Everything

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The Persistence of Spiders and Small Children

“The Itsy Bitsy spider climbed up the water spout

Down came the rain and washed the spider out

Out came the sun and dried up all the rain

And the Itsy Bitsy spider climbed up the spout again”

A popular children’s nursery rhyme can teach us so much about persistence. As parents we have no end in sight when it comes to advocating for our kids. We will jump tall buildings in a single bound if we believe it will make a difference in the life of our children. However, why is it that when our kids mimic this behavior that we often find our selves in an epic battle with them??

My daughter may have autism, but she doesn’t let anything stand in her way. She is the epitome of persistence. After a mini battle with her over the TV remote that involved her punching each button changing the channels a zillion times I came to this eureka moment.

After a quick barrage of stern words I removed the remote from her grasp and placed on the bookshelf out of reach before leaving the room to attend to other duties. Yes, out of reach, is there really such a thing as out of reach? Upon my return to the room I catch a glimpse of her tippy toe maneuvering and giraffe like body raising from the carpet with her tiny, sticky fingers grasping onto her trophy. The channel changing game starts all over again!

Perhaps I misjudged the reach of her grasp. I remove the remote with a scolding, and proceed to place the remote a bit higher on the Eiffel Tower feeling secure in her loss of interest as she begins playing with one of her toys. My phone rings with the blare of a piano rhapsody as I turn my attention to the caller on the phone. While I am preoccupied with my conversation I do not notice the makeshift ladder that is being constructed in the next room. Suddenly I hear an orchestra of Bugs Bunny laughter laced with car crashes and game show buzzers. A family feud is about to begin as I enter her lair and find the overstuffed ottoman, a few large pillows, and the dining room chair from the next room constructed in a Dr. Seuss like fashion scaling the bookshelf. I gotta give her credit for originality. At this point I turn off the TV, take the remote and tuck it safely into the desk drawer turning the key to safely lock-up the magic noise wand. Once again my daughter’s attention wanes as she proceeds to explore the pile of blocks, dolls, and trinkets scattered on the floor.

I finally sit down to begin the chore of writing checks to pay bills, sipping a luke-warm cup of Joe when suddenly the sound of jets flying overhead jolt me from my slumber. Yep, standing in the middle of the room, magic remote in hand, accompanied by The Wiggles at an ear-splitting 120 decibels is Superman! I truly underestimated this 8-year-old child and her drive and persistence. I take the noise scepter from her tiny hand once again and lower the Wiggles to a more ear pleasing 10 decibels. My daughter grabs her red, plush cape and flies into me at the speed of lightning ready to snuggle with me on the sofa. The Wiggles break into their version of the Isty Bitsy Spider and I suddenly realize that I may not be fond of creepy, crawly, creatures with 8 legs, but I am very proud of my persistent little spider who reminds me daily with her abundance of energy, enthusiasm, and persistence that even when it rains the sun will come out again and we will conquer that rain spout together.

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On Stimming and why “quiet hands”ing an Autistic person is wrong

Thanks for sharing this article. I think it is so important that we build understanding.There are so many misperceptions about autism and it is time we educate the world. Reblogging monteithm.net

The Caffeinated Autistic

Trigger warnings for ableism, abusive therapy, prevention of communication, and self injurious behavior (at the very end)

I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t…

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Another School year begins. Let’s build understanding

Many children will start back to school tomorrow continuing their educational journey. Please take a moment to remember that this right of passage is difficult for many children with special needs and for their families. Please share this beautiful, heartfelt letter with teachers, school personnel, parents, community members, and friends. Let’s build a true understanding of special needs rather than misunderstanding.

 

(reposted from blog : The Life Unexpected – by Marianne Russo)

To Whom it May Concern,

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own ….. be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face. Know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

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“Laughter is the sound of the soul dancing” – Jarod Kintz

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“Laughter is the sound of the soul dancing” – Jarod Kintz

When you raise a child with autism who is nonverbal you crave the sound of even the smallest utterance from your child. You want to climb inside their soul and know what they feel, what they think and how you can protect, comfort and reach them. You examine every facial expression hoping that you will one day unlock the meaning of each grimace, each smirk and the emotions they convey. I can recall on one hand how many times my daughter Sarah has spoken even the slightest semblance to a word.

One morning a couple years ago Sarah was in one of her cantankerous moods. I had poured her a small glass of orange juice and set it on the table. She proceeded to saunter over to the table, pick up her glass of orange juice, turn it upside down and watch the citrus rain shower as it plummeted the carpet. I immediately went into my mommy disciplinary role scolding her with the firm tone of my raised voice, “Sarah, why did you pour your juice on the floor???” My banter continued as I quickly grabbed a towel from the kitchen. Although I knew that she was unable to respond the process of talking seemed to help my dealing with yet another mess to clean up.

In the midst of blotting and scrubbing and bantering I heard the small sound of laughter coming from the Strawberry Shortcake, nightgown clad child sitting on the floor behind me. I immediately responded with, “Sarah! it is not funny that mommy has to clean up your mess!” What happened next?

Every other sound in the world grew silent. The hum of the dishwasher suddenly stopped, the slow leak from the kitchen faucet froze as if in mid-air, The Wiggles concert blaring from the TV gridlocked in time….and from somewhere in the distance, between the giggles, I heard the sweet, small sound of my daughter’s voice for the first time, “mom mad, mom mad, mom mad”

The deluge of emotions rushed over me like Niagara falls. I swiveled to face my daughter to just double check that I wasn’t delusional. Her Poptart smudged face covered with a smile the size of the moon, her lips moving in slow motion like the silent movies from yesteryear… “mom mad, mom mad….” I quickly scooped her into my arms half laughing, half crying, “Mommy isn’t mad, Mommy isn’t mad”. We both collapsed on the floor with bellyaching laughter.

I wish I could tell you that her two, small words started an avalanche of language. I have not heard my daughter speak a word since that day over two years ago. However, what I did discover is that her soul dances every day in sync with mine. We waltz through life expecting things to turn out a certain way and sometimes forget to cherish what really matters. Pure, simple joy!  I have to run now,  I have a dance partner waiting 🙂

 

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Deeper Levels of Stigma

This post struck a cord with me. If the world thinks that people with special needs would be better off dead, how willing will people be to help them live a good, satisfying, fulfilling life?

As I shared in an earlier post everyone is facing their own battles that others may never see. Robin Williams death has lead many people to start talking about taboo subjects like depression, suicide and now added to the list disabilities. Let his life/ death remind us of what is at stake. Everyone deserves a chance to live a fulfilling life. Don’t become one more reason for someone to feel like life is hopeless. People with disabilities don’t need your judgement or your pity, they need your respect!

Unstrange Mind

Robin Williams and Michael J. FoxSince you’re on the internet, you’ve already heard the latest news — Robin Williams’ wife announced that he had been diagnosed with Parkinson’s Disease. He hadn’t wanted to announce it publically yet. He had not returned to drug or alcohol use. He was deeply depressed because of the Parkinson’s diagnosis.

The responses I saw, just in the first hour after learning this new information, revealed to me that there is a deeper level of stigma than mental illness. When all we knew was that Robin Williams had succeeded at suicide and that he had a history of drug and alcohol abuse and that he had spoken openly about depression and mania, there was an outpouring of compassion about the pain of depression. A few people aside, people were talking with compassion about depression. People were sharing phone numbers of hotlines. People were telling one another to be there for their…

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Silver Linings from the sock drawer

So, you may be wondering how I came up with the name Silver Linings from the Sock Drawer. I have a daughter who was diagnosed with Lennox Gastaut Syndrome which is a very rare seizure disorder with multiple types of seizures that are resistant to most anti-epileptic drugs. The diagnosis of autism followed when she turned two. Children with autism don’t see the world through the same lense as everyone else. For some reason that I still do not fully understand Sarah was obsessed with her sock drawer. Sarah discovered that when she removed all of her socks from the sock drawer, turned the drawer upside down and climbed the makeshift ladder to the top of the chest of drawers she could perch herself up on her magic tower. The trick with the sock drawer became a daily obsession. Several times a day Sarah would empty the sock drawer, sometimes one sock at a time and other times by grabbing a handful of socks and strewing them around her room like glitter. Exasperated each time I would get down on my hands and knees and pick up all of the socks, place them back in the drawer and ask her why she was so obsessed with her socks. Sarah would watch with anticipation and as soon as I would close the drawer and exit the room, sometimes within minutes, the game would start all over again. One day I realized that she was trying to invite me into her world. My silver lining showed up each day with her sock drawer. For a few moments I could forget all about therapies, medicines, and how we would survive another day. I discovered that when I got down on my hands and knees like Alice in Wonderland and crawled through the tiny door I was able to enter her world without windows.
We all face struggles and difficult times in our lives, but how do we survive this journey we call life? Perhaps we look for the silver lining each day. You can find your silver lining in the most unordinary places. Maybe your silver lining is hiding in your sock drawer.904593_10200111902024450_1026705972_o

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Excuse #1 for not exercising today.

If you have ever had good intentions about getting in shape only to find yourself at the gym wondering why you thought you might be worthy of the title “gym mom” this video is for you. Enjoy!

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