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Welcome to Shut Up About Your Perfect Kid

Therapy and sanity for ordinary parents of special kids.

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Five Small Steps for Imperfect Womankind

The little things. If there’s one important thing I’ve learned during my vast experience parenting two special needs daughters and a special needs dog (he has eye contact and bilateral motor integration issues), it’s to celebrate them.  I’m not just talking about the little accomplishments of my children — the late adolescent shoe tyings, the days without calls from the school, or even those rare occasions when they remember to put toilet paper on the roll. I’m talking about the little accomplishmentsachieve as their highly imperfect mother. You see with two special children, two careers, and two serious Reality TV show addictions, my life can get very hectic and well…imperfect.  As a result, some of the things that come so easily to other women — cleaning, grooming, breathing — are not always so easy for me.  But in the spirit of embracing my imperfection and what little sanity I have left, I’ve decided not to dwell on the things I don’t do so well, but to celebrate the rare things I do do well.  So, at the risk of you telling me to Shut Up About My Perfect Little Things, I’ve decided to share five of my proudest accomplishments this past week.

Drumroll please…

1)   I wore real pants three times last week. Now before you go around visualizing  me pantless, (I wouldn’t wish that on anyone), I must remind you that we are a G-rated blog.  What I mean is that I actual wore real pants. For those unfamiliar with this phenomenon, real pants are those that come with zippers, buttons, and pockets as opposed to elastic waistbands. As a writer who works out of my home, it had been some time since I had to wear real pants. Thankfully, zippering is like riding a bicycle; you never forget how to do it. And given the difficulty I had with my zippers, I was also reminded me that I probably needed to spend more time on a bicycle.

2)  I styled my hair. I’m not just talking shampoo and conditioner, I’m talking blow dryer and round brush. My husband noticed right away. “Gina, you look great. Did you do something different?”

“Yes, I brushed my hair.”

“Well, that look looks great on you. You should do it more often.”

3)   I had a real date. Before you get excited about salacious gossip, it was with my husband. (If you really know me, you’d know that I am far to distracted to carry on affairs. I’d mix up who I was supposed to meet and where). Now, I’m the first to admit with one daughter away at college and another with a busy social life, my husband and I now spend a lot of time alone.  While we have had a series of dates recently  — shoveling the driveway, shopping for toilets — this one was extra special. We actually went out for dinner and a movie. I must admit, when he requested that we sit in the back row, I was a bit nervous. 

“Mike, why are we sitting way back there? You don’t want to make out do you?”

“No, the sound isn’t as loud back there.”

4)   I remembered my daughter’s therapist appointment. For once, I didn’t need the therapist’s reminder system — the email, automated phone call, missed appointment bill,  or singing telegram.  Of course, it may have helped that I asked the 130,000+ members of our Facebook page to remind me. Thanks to all who participated.

5)   I cooked dinner.  I made pork chops. And even though I set off the smoke alarm (special thanks to my City’s Fire Department for their responsiveness), I felt good that I was finally able to have my husband come home to a meal that didn’t arrive on wheels. He would later fire me for making the pork chops taste like “hockey pucks,” but he did appreciate the effort, especially since hockey season is in full swing.

So there you have it. That’s my special parent brag list for the week. Let’s hear yours.

 

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The Polls Are Open! Vote for your Favorite Imperfect Snowman!

Attention voting imperfect public! The finalists for our Imperfect Snowman Contest have been chosen. Take a moment to vote for the winner. Polls will close on Friday, January 31 at 8:00 p.m. with the winner announced on this blog on Saturday, February. The imperfect winner will receive a Shut Up basket packed with imperfect goodies, including an autographed copy of our book, Shut Up About Your Perfect Kid, along with the imperfect glory of knowing they’ve won. Hurry up and vote before they melt!

 

 

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NEW CONTEST — The Imperfect Snowman

 

Hold on to your imperfect seats. Imperfect Senior Management at Shut Up Industries has just announced an exciting new contest for January 2014 — the Imperfect Snowman. For this contest, we’ll be looking for folks to construct a snowman that represents your imperfect life.  We will select three finalists and then open voting for the final winner on our Blog.

To participate, email your snowman photo to info@shutupabout.com with the subject “Imperfect Snowman Contest.” Entries must be received by January 29, 2014. Finalists will be posted on this blog for voting on January 29 with the winner announced on January 31, 2014.

Winner will receive a Shut Up basket filled with imperfect goodies, including a first and second edition copy of our book, Shut Up About Your Perfect Kid; a t-shirt, Shut Up magnets, and a Vino-2-go-Tumbler, plus other cool and exciting imperfect stuff (from the “Dollar Store”)

To help you understand this complex contest, we’ve created the following FAIQs (Frequently Asked Imperfect Questions).

What if I don’t have snow where I live? You can either move to the North Pole, Antarctica, Siberia, Aspen, or save money by making a snowman out of sand, ice, prescription bottles, or other elements from your area.

Can children enter? We’re going to make this an adults-only (age 18 or older)  imperfect snowman costume. Immature people may enter as many times as they like except P and G. Sadly, they can’t enter.

Do you reimburse for frostbite-related expenses? Keep in mind that Shut Up Industries is not responsible for any frostbite, chapped lips ,or gangrene you may suffer while making your snowman.

When does it start? This exciting contest starts right now. You may submit entries up until January 29th at 9:00 a.m. EASTERN TIME

How will you judge the winner? For the finalists, we will be looking for entries that are funny and creative and best portray imperfect life. Finalists who meet this requirement will then move on to our imperfect swimsuit contest. (Just kidding — it’s a Yoga Pants Contest).

So what are you waiting for? Get building.

 

 

 

 

 

 

 

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Debunking the Myths at Shut Up Industries

 

Now that The Movement of Imperfection is catching on like old IEP documents to a gasoline-fueled campfire (not that we’ve experimented with this or anything) and our Facebook community has grown to 80,000 peeps, we thought we’d take some time to clear up some of the myths surrounding our esteemed, imperfect company, Shut Up Industries, LLC, The Movement of Imperfection, and its imperfect creators.  So without further delay…

MYTH: Shut Up Industries is a Fortune 500 company that pads the already-stuffed pockets of its “fat cat” executive owners, Gina and Patty.

FACT: Shut Up Industries is not a Fortune 500 company, though with our shaky management team, weak profit margins, and poor leadership styles, we fully expect to crack the MisFortune 500 list later this year. As those who read our annual report know, our compensation packages are limited to going to lunch frequently (“We love lunch”) and saying the phrase “shut up” any time we want.

MYTH: Shut Up Industries has a full-service, world-class Shipping Department.

FACT: Sadly, this is no longer true. After our beloved mother passed away and went to the Shipping Department in the Sky, our Senior Shipping Department disbanded. Fortunately, we were able to find cheap labor in Gina’s house with her 14-year-old daughter. (“Emmy, if you ship this package for me, I’ll let your friend sleep over.” ) To receive a package from the new Teen Shipping Department, visit the Shut Up Store. Then say a prayer that it actually gets there.

MYTH: Patty and Gina’s full-time jobs are running Shut Up Industries.

FACT: Though they would love nothing more than to work for the company that both allows and encourages them to make mistakes and meet caring compassionate people, both Patty and Gina have full-time jobs. Patty works as a Family Partner and Gina as a freelance copywriter out of her house, where she ignores laundry and other domestic matters daily.

MYTH: Patty and Gina just have a blog, book, and Facebook page because they are attention-seeking narcissists.

FACT: Though we readily admit that we like the fact that we have people who actually listen to us (something that rarely happens at home), we maintain and manage our blog and social marketing sites with the intent of allowing special needs parents to get free support and therapy. If we were truly narcissists, we would talk about ourselves in the third person. Patty and Gina never do that.

MYTH: Patty and Gina are making things up; they both are perfect. 

FACT: Gina’s husband, Mike, insisted on debunking this one. His response: “bwhahahahahahahahahahhahahahhahahhahahahahahahahhahahahahahahahahahahaha!”

MYTH: The Movement of Imperfection is telling special kids that they are imperfect and not whole.

FACT: The Movement of Imperfection, created by Patty and Gina, encourages all parents of all children — special and typical — to celebrate the unique gifts, blessings, and milestones of  their kids..And, it encourages all kids to be the best they can be. (No wait, that may be the U.S. Army.)

MYTH: Patty and Gina are writing another book.

FACT: It is true that we have taken a break from our routine writing (check writing) and are working on a new book that celebrates mothers, in honor of our late mother. Our goal is to put aside our daily distractions and procrastinations so that we can finish it before we become late mothers.

We hope this clarifies some of the myths that are circulating. If you have a question about Shut Up Industries or about Patty and Gina, which doesn’t involve our weight or IQs, please feel free to ask us.

 

Shut Up Industries, LLC. Equal Opportunity Imperfect Non-Employer.

 

 

 

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An Imperfect Community Mourns the Loss of a Special Soul — Jill Sifinski Gibson (1964 – 2013)

Jill Sifinksi Gibson 1964 - 2013

 

How do you want to be remembered when you leave this earth?

By the wealth you amassed?

The material possessions accumulated?

The professional milestones you achieved?

The hours logged in at the gym?

Jill Sifinksi Gibson will not be remembered for any of those things.

For those who don’t know, Jill Sifinski Gibson was a warrior special needs mother, who along with her 13-year-old son, Shane, died in a tragic car accident on Christmas Eve.

By society’s high standards of perfection, Jill’s life was not a standout.

She didn’t have very much money.

She didn’t take exotic family vacations.

She didn’t live in a fancy house or drive a fancy car.

In fact, she barely left her family’s apartment, after suffering from complex regional pain syndrome (CRPS), which left her primarily bedridden.

But Jill’s lack of mobility didn’t stop her from doing what she did best – moving people with her acts of kindness.

Her poor health, financial worries, concerns for her special needs sons, and confinement to her home might have caused her to be angry  and bitter, but Jill chose to spend her days making the most of what little she had.

From her bedside, she underwent an intense program at Capella University in pursuit of a degree in healthcare management. She earned straight As, and constant recognition on the Dean’s List. Despite her pain, she managed to get up in a wheelchair to keep her family’s apartment clean and fill their hearts and bellies with special meals she had lovingly prepared for them.

While Jill was passionate about her education, there was nothing she was more passionate about than advocating for the education of her two special needs sons, Shane and Matt, who had autism and bipolar disorder respectively. Jill spent many difficult days battling with school systems and insurance companies to find the right care for her boys. Despite years of hardship, she was able to steer Matt on a positive path through home services and Shane participated in ROTC and a Science Olympiad, where he was building a robot.  Jill was thrilled, telling her friends, “This is the first year I feel like they have a chance.”

We came to know this selfless woman from Hopkinsville, Kentucky in our Facebook community, where she was among the first to share her struggles, hopes, and heart to help other special needs caregivers. People were so struck by her kindness and compassion that she quickly formed friendships outside the page with folks from around the world. Her impact on their lives was inspiring.

When a friend she had met from the community’s sister was involved in a terrible train accident, Jill stepped forward to help. Writes Sethany, “She lit candles and checked in on my sister’s condition every day. When she heard about how badly Amanda was being cared for in a nursing home in Florida, she started a letter-writing campaign to the nursing home, the Department of Health, and reporters. When my sister got better, Jill sent her a care package with snacks.”

Another Facebook friend, Deb, writes:

“When I was having really rough times, I would get surprise cards in the mail that Jill had made to let me know she was thinking of my family. Although she was in constant pain, she complained very rarely and put her family and friends’ needs before her own.”

Eileen, a close friend and fellow chronic pain sufferer who met Jill on the Facebook page, shares her story:

“She was so sensitive and so caring… like a mother bird bringing everyone under her wings. She showed me how to handle my chronic illness as well. When I felt sorry for myself, I would think of Jill and how she cooked and cleaned for her family FROM A FREAKIN WHEELCHAIR!!!! And I’d get on my damn feet because, even though it was difficult, I could still walk! Her spirit kept me alive sometimes when I thought I might die from the pain.”

Jill’s kindness to others was a gift that she was able to pass on to her late son, Shane, as another special needs mother and close friend, Laura, shares:

“Shane obviously followed in his loving mother’s footsteps. She raised him to be a generous, loving kid. He would spend hours talking to my son (who is also perfectly imperfect) to help him install apps, so they could chat online while they played games together. My son has one friend at school, but Shane was the only friend he had that he actually got to spend time and play with. To anyone who says that Internet friends aren’t “real friends,” I disagree. You don’t have to be able to see someone face-to-face to feel their love.”

Another woman from our Facebook community sums up Jill’s impact on her life even more succinctly:

“Jill saved my life.”

Reflecting on Jill’s connection to others, Facebook close friend, Heather, shares:

“I really believe Jill’s pain and disability was for a reason. If she was working outside the home, she would never have touched so many lives the way she did. I know she had her moments of feeling anxious and hopeless and downright angry from the pain, but she always stayed positive and she always put others first. You kind of had to tweak it out of her to know how she was really feeling. She didn’t want to complain.”

 A Final Act of Kindness

Knowing Jill’s heart, it’s not surprising that she lost her life doing one final act of kindness for her loving family. Though she didn’t have much money, she managed to surprise her family with tickets to see the Tran Siberian Orchestra perform on December 23. She arranged for her family to drive from their home in Kentucky to the concert in St. Louis with friends. The long car journey would not be an easy one with Jill’s severe leg pain, yet that wouldn’t deter her, as she shared in a final text to her friend Eileen: “The pain is not good, but it will all be worth it. My family is happy and that’s all that counts.”

Fortunately, Jill and her family did manage to get to that concert and have the time of their lives. The accident occurred on the way home the next day.

Jill’s 11-year-old son, Matt, and her loving husband, Chris, survived the accident. Matt remains in the hospital in St. Louis and Chris hopes to bring Matt home and transport Jill and Shane so that they may be laid to rest at home in Kentucky. A special fund has been established to help Chris at  http://www.youcaring.com/memorial-fundraiser/help-bring-jill-gibson-shane-home/120282

Compassionate. Selfless. Kind. Positive. Loving. Fiercely loyal. Beloved.

That’s how Jill Gibson will be remembered.

How will you be remembered?

 

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“Acceptance of Autism” by Scott Lentine

 

Wanting to be free

Wanting to be me

Trying to make people see

And accept the real me

 

Some people think my voice is too loud

And that my mannerisms strike them as being odd

This perception of me by others keeps me feeling blue

But there are plenty of struggles in life that I must get through

 

I am determined to show my critics my true personality

Hoping that people move away from their narrow-minded mentalities

I want them to know that I am a bright young man

Who is willing to take on as many challenges in life as I can

 

 

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‘Tis the Season to Procrastinate

Gina and her husband, Mike, carefully selecting a holiday tree.

 

And so it begins. Again.  The stress/anxiety of playing catch-up during the holiday season. Not sure how I got so behind this time.  I mean it’s not like I haven’t had ample time to prepare, since retailers started the holiday season a tad earlier this year —  July 5. In fact, I think they’ve even changed the name of that popular holiday Christmas preparation song – The 120 Days of Christmas.

This was going to be it – my YOP (Year of Preparation).  I was even going to accomplish something I haven’t done since my girls were young – a holiday Christmas card. I would shoot it on Thanksgiving, when my oldest was home from college. How hard could that be? Clearly not as difficult as it was when my girls were little and wouldn’t stay put, right?

At least that’s what I thought, until I realized they don’t exactly get along.

“That’s great girls, but now let’s take a photo of you two without your hands on each other’s throats.”

What’s worse is that I didn’t even have my parents to help me this year. My mother passed away two years ago and my father “retired” from holiday photos when my kids were young.

“Gina, don’t ask me to come with you to take holiday pictures again. I don’t need that heavy stress at my age.”

Truthfully,  I can’t really rule out that my mother’s heart condition was not caused by my kids’ holiday photo stress. (Sorry, Heavenly Mother.)

On to Another Imperfect Plan…

Well, if I couldn’t do the card, at least I could accomplish something else on my holiday preparation list – putting up holiday decorations early. Of course, I should have known that my busy schedule would foil that plan.

“Mom, can we put up the decorations tonight?”

“I can’t, Honey. Tonight the Real Housewives of Beverly Hills are on.”

“How about tomorrow night?”

“Nope. Can’t do it. I’ve got two episodes of  Shah’s of Sunset to catch up on.”

Of course, my “helpful” kids (at least when there’s something in it for them) offered to pitch in.

“If you give me a $100 bucks, Mom. I’ll do it.”

Honestly, I prefer to decorate without them. Let’s just say our decorating styles are not in sync, especially when it comes to Christmas tree lights.

“Girls no offense, but I don’t like my Christmas tree to look like the Palms casino. I like white lights. They’re very elegant on the tree.”

“But Mom, that’s so boring.”

One year, I compromised and bought a fake tree that came with a remote control. With the click of a button, I could change the lights from tacky to elegant. I had quite the system down.

“Mommy, why did you change the colored lights when I went potty?

Well, at least until my husband seized control of that clicker, too.

“Awww, come on Gene, we like the flashing lights.”

 Holiday lists.

While I may be a holiday procrastinator, my 14-year-old daughter doesn’t take after me.  I was quite impressed when on August 30, she handed me her Christmas list, stating quite proudly, “Mom, I only have two things on my list.”

“Em, I am so touched; you’ve finally realized the true meaning of Christmas,” I proudly responded, before I realized that one of the items on her list was a Lexus. (Kudos to Lexus on an effective advertising campaign,  since my daughter doesn’t even know how to drive.)

But despite my slow start again, I know that on December 24,  I’ll have my elegant white-lighted tree up with ample presents underneath. I also know that I’ll take it down… eventually… sometime…when I get around to it.

 

 

 

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Guest Poem by Ilana Jaffe

We are honored to share the work of the talented Ilana Jaffe. Ilana has ODD, ADD, and a learning disability. She also has a talent for writing.
Eyes Set on the Planets by Ilana Jaffe
(c) All rights reserved
Physically wired for chaos
with roller coaster tracks taped to my veins
sparks of electricity bouncing off my bones
gears and switches taped along my spine
alluding me to think they control this machine I call a body.
alluding me to think among them is a button
that could stop this motor that never seems to run out.
but even if my spine were covered with such controls
I wouldn’t be able to reach them anyhow.
My arms can’t bend that way
Mentally diseased with the need for absolute order
causing me to latch on and dig in to all things I deem
worth the aggravation and frustration repetition can bring.
endless rhythmic patterns that demand to be kept up with.
Thoughts that become as proverbial as the sunset.
A foreseeable consequence carefully perched atop
an instruction manual that’s missing a few lines,
leaving me to spend more moments then I’d like to admit
filling in the blanks
I have learned to abide
this shadow I still can’t describe
that walks with me.
Sometimes it leads.
Sometimes it follows.
Sometimes we walk beside each other
But a shadow none the less.
a kind of shadow that life depends NOT on the sun
but on me
for I somehow provide the necessary light
it needs, while its influencing my every action,
Singing: “That’s not how it’s supposed to be”
but a voice inside me,
that could be coming from my left foot, for all I know
sings back: “its not supposed to be anything”.
but no matter what I do
these two songs wont’ harmonize.
Despite all of this,
to the rest of the world,
I appear to be just another face of anonymity
for, it is always halloween
yet not one candy bar is given for this costume I have spent a lifetime constructing
just a pillow case full of words that make resilience
feel like a broken promise and a wasted investment.
I’m reaching. Eyes set on the planets.
but I cant get past the stars.
Now, the stars…they are beautiful
and on a good day I can see
that each star houses a struggle
and when I back up to look at them all
I can use my finger to create constellations
that I hope to show to my someday somebody.
In their own way, the stars are beautiful
But they are not the planets that call my name
They are not the planets that I know will click perfectly into the craters along my arms.
and I NEED them filled.
because if these craters are filled
I will be able to grow sunflowers out of the palms of my hands
long enough to reach the controls along my spine.
Giving me a chance to find out if they would be of any help.
If these craters are filled
I will be able to grow sunflowers out of the palms of my hands.
and written on their petals would be some of the words
missing from the lines that are missing from that instruction manual
So I’m leaving sticky notes around the house
with words to help remind me
to listen to my left foot when it sings:
“it is not supposed to be anything”
because, if that’s true
and its NOT supposed to be anything
then “it” has the potential to be everything
I know I am bigger than I feel.
and all the things I am and all the things I am not
are here and not here for reasons I am meant to discover
after a few more birthdays have passed.
I keep a telescope in my pocket
that lets me admire the planets when the sticky notes stop working
I tell myself:
“I WILL reach the planets one day”
and leave these stars behind
but on my way up I will wave to them
“thank you”, I will say
“You’ve been wonderful to me”
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Photo of the Day

No one can say children with Asperger’s aren’t honest — and bright. Check out this brilliant answer a young Aspie gave on one of his Math test questions. He does have a point. 

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Quote of the Day

Young Jessica crying her eyes out when her mother told her she had to go to social skills group. “I don’t wanna go. I don’t like people.”

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A Tale of Two Gallaghers

Gina just happened to come upon some Facebook pictures of her daughter Katie at college (not that she was sketching on her daughter or anything).  Katie looked so happy. Meanwhile back at G’s homestead…

 

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A Lesson In Letting Go of a Special Child — and White Pants (Gina’s anguish)

 

Silly, silly me. I thought letting go of my daughter to attend kindergarten was hard. Back then, I could at least follow the bus, bribe a lunch lady, and rummage through her Scooby Doo backpack to find out how she was doing. (Hey desperate mothers call for desperate things.)

That was a piece of Little Debbie Cloud Cake compared to the letting go I had to do this past Labor Day Weekend. I’m not talking about letting go of my white pants and shoes for the season, though that was pretty tough. This was the hardest letting go I’ve ever had to do — I had to let my special daughter begin her life without me at college.

I’ll admit, there was a time, a very long time, when I thought that day would never come. At least that’s what the experts told me when she was first diagnosed with her disability.

“Mrs. Gallagher, she probably won’t be able to graduate high school, let alone go to college.”

“She’ll be living with you for the rest of your life.”

Of course, I made the mistake I have been so guilty of making for most of her young life;  I underestimated her will. As a kid who  has always wanted to “be like everybody else,” she desperately wanted to live away at college, and worked diligently toward her goal.

She succeeded.

I’ll admit, I was scared to death at the thought of her taking on this challenge, recalling my own college experience and the struggles I had without a disability.

What if she doesn’t make friends?

What if she gets a terrible roommate?

What if she gets too homesick?

 I even had painful flashbacks of my move-in day panic attack when my parents left me behind.

“Mom and Dad, don’t leave me!”

“Gina, please let go of the bumper! It’s dangerous!”

I was so homesick my first few weeks that I expected the worst for Katie. I wondered, If I had struggles without learning and social issues, how much worse would she struggle?

I prepared myself for the sobbing phone calls that I made to my parents. (“Mom and Dad I want to come home. I hate it here!”). The poor things never even had caller ID to screen those desperate calls.

But once again, I underestimated my daughter’s strength and will.

After I helped set up her room, I turned to say goodbye. She gave me a hug, a sweet smile, and said, “Bye Mom. I love you.”  Then I watched her leave with her roommate and the other students to attend a dorm meeting.

After trying to keep my fears and emotions in check for Katie, I got in the car and sobbed on the way home. When I finally arrived  home, I was ten pounds thinner and no longer retaining water. I found my husband, who had gone home ahead of me in a separate car, sitting on his chair in the dark.

“Mike, are you OK?”

“Yeah,” he said, “I’m just sad that she’s not here. Are you sad?”

I replied, “Yes. I’m so sad. I’m also happy, proud, worried, scared, ecstatic, hopeful, and empty.  Do you know if they make a med for that?”

What was most difficult was realizing that for the first time, we would  no longer know what our daughter was doing or how she was feeling. Was she scared? Sad? Lonely?

We had to force ourselves to live with that and to let her contact us when she was ready. The first evening, we didn’t hear anything from her.  As highly experienced recipients of frequent bad news calls and texts from our children and their schools, we knew that this was a positive sign.

The next morning, my husband was climbing the walls. “Gene, I’m sketching on her on Facebook. I feel like a stalker. I’m dying to know how she is doing.”

“I know Mike, but you can’t do that. You’ve got to give her space. Besides, I’m Googling Nanny Cams to see if we can put one in her dorm room.”

Throughout the day, we anxiously awaited  for her to contact us.  Surprisingly my husband was the most anxious, “Mike, I don’t think it’s a good idea to take your phone into the shower with you.”

Around 9:00 p.m., we both finally received texts from her. She wrote,  “Hi Mom and Dad. I love college. I’m making friends and I’m not coming home this weekend.”

We could not have been more thrilled… or relieved…or proud….or happy… or sad. And it made us realize that it was time for us to grow up a bit and let go.  After all, it wasn’t like we didn’t have another kid —  we still had her 14-year-old sister Emily to nurture, though she didn’t seem to be thrilled at that prospect.

“Dad, stop following me around the house! And Mom, get your nose out of my backpack. You guys are so sketchy!”

 

 

 

 

 

 

 

 

 

 

 

 

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Bye, Bye, Bye! Interview with “The Mom With the Moves,” Bus Stop Dancing Sensation, Tracy Moutafis

 

She’s been called many things. “Ma,” “Mommy,” “Mom,” “Mum,” “Mama.” Probably even “crazy” by unsuspecting motorists.  A Boston television station once referred to her as “The Mom with the Moves.” She’s Tracy Moutafis, mother of two who’s taken the country and the Internet by storm with her unique bus stop boogie, an annual dance ritual in celebration of her children going back to school. We had the privilege of interviewing this dazzling  dancing dynamo to learn what moves her to take part in this heralded annual tradition.

SU: So Tracy, what inspires you to dance on the streets?

TM: Well, I love my children dearly, but let’s face it, by the end of the summer, I am ready for them to go back to school and they are ready to get away from me. Five years ago, I decided to show my excitement by breaking out in dance when the bus came. I’ve done it every school year since then.

SU: You’ve gotten quite a bit of publicity. In fact, we’re surprised you haven’t been a contestant on So You Think You Can Dance in the Streets? How did a Mom like you end up in a place like this?

TM: Well, it started off that I posted the video on Facebook for my friends to see. They thought it was hysterical. The next thing I know, I’m getting a call from the local newspaper, which wanted to post the video.  It took off from there. I’ve been on Boston TV, Good Morning America, and I was on Skype for Anderson Cooper’s show.  This year, I got a call from Fox and Friends.

SU: You have quite the moves, did you have any formal dance training say at Arthur Murray Studios? Or were you ever on Solid Gold?

TM: I don’t like to brag, but I did dance for several years as a kid at Miss Maria’s Dance Studio in Watertown, MA where I grew up.  I also danced at high school dances.

SU: Some of our loyal followers are dying to ask you questions. For example, a Mom would like to know if you’ve ever fallen in a crosswalk.

TM: Knock on wood, I’ve never fallen in the crosswalk or been hit by the bus.

SU: Another mother would like to know why in this year’s video, you didn’t dance when your kids got on the bus to increase the embarrassment factor?

TM: Well, in the past I’ve done that. But my 12-year-old, who started middle school, was a little nervous about it. I made a deal with him that I wouldn’t do it until he was on the bus. I love my son and had to keep my promise.

SU: How do your children and husband feel about your display of excitement?

TM: They think it’s really funny.  My 10-year-old loves it. I was going to dance for his bus, but then thought about it and didn’t want to overexpose myself.

SU: I see, so you don’t want to be like the Kardashian’s of bus stop boogiers?

TM: Yes, that’s right.

SU: How have your videos been received?

TM: A lot of people think they are hysterical. Others, have been so critical saying that I don’t love my children. One person even told me to go to a gym and get dance lessons.

SU: Well, personally, we are huge fans of your work. In fact, just the other day we tried copying your moves in the mirror. We weren’t successful until we served wine. Then, we were break dancing.  What would you like to say to those critical people?

TM: I would tell them to lighten up. I love my kids more than anything. But I’m human, too and there are times when I just want to go to the bathroom without someone screaming “Mom!”

SU: What would someone be surprised to know about you besides the fact  that you studied at Miss Maria’s?

TM: People don’t realize that my oldest son has autism. He has his struggles so when he gets on the bus it’s something to celebrate.

SU: In the past you’ve danced to Celebration and Beat It? What made you choose this year’s song, Bye Bye Bye?

TM: Well, I figured with the resurgence of ‘N Sync, it was timely.

SU: Yes, it was. We’re glad you went that route instead of the Miley Cyrus route.  Where can we see more of your great work?

TM: You can watch all my videos on Youtube.com.

Tell us would you like to dance with the Bus Stop Boogier?

 

 

 

 

 

 

 

 

 

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Guest Blog – 5 Ways to Prepare Your Kid with Disabilities to Begin the School Year

Change is hard.

And for kids who have disabilities, it can be extra hard.

 So how can we help our kids transition from their relaxed, summer routines to their more structured school year routines?

Here’s some ideas to consider:

1. Visit your school. Let’s face it, the first day of school can be chaotic. School bells are ringing, hallways are swarming, children are buzzing, and there’s ample opportunity for kids to become confused. Consider visiting your school before the chaos sets in. Let your child explore the environment when it’s quiet and calm. Perhaps you can even schedule multiple visits to make sure your child feels extra comfortable in a new setting.

2.     Talk to your education team. Gather your education team together – your general education teachers, your special education teachers, your paraeducators, etc. – and ask them to visit your child at home or in a familiar setting. This allows your son or daughter to meet new people in a safe, familiar environment.

3.     Write a welcome story. Kids with disabilities need a chance to visit their classroom, but it’s also helpful for them to know their new routine, the names of their new teachers, where and how to line up, what to do with their backpack, etc. Write a welcome story that describes each of these items and allow your child to read it over and over again. (See School Welcome Story for more details).

4.     Carry a classroom item. Allow your son or daughter to carry something that belongs in the new environment. For example, during a school visit you could allow your child to take a toy, book, or poster piece home (with the teacher’s permission). That item needs to be returned the first day of school. This will take the pressure off the “child” walking into the room and put that on the “item” coming into the room. This is especially effective for children on the autism spectrum. Instead of the teacher saying, “Come in, Eric” they can say, “Let’s put the book back on the shelf.” This may be helpful transitioning from gym to music room to chapel area (e.g., carry the ball to the gym, bring a note for the music teacher, find some other item that needs to travel to that spot).

5.     Ease the transition. Have a few familiar people stay with your child for the first few minutes of school. Ask the teacher if you, your spouse, and/or a sibling and your child can come to school earlier on the first day. Use the time to play together in the classroom before the others arrive and then slip out when your child appears to be happily engaged in an activity.

This passage was adapted from “Nuts & Bolts of Inclusive Education”, a new book by Barbara J. Newman. Barbara J. Newman is a church and school consultant for CLC Network, a non-profit organization based in Wyoming, Michigan that promotes the development of people with a variety of abilities and disabilities to live as active, integrated members of their communities. CLC Network partners with families and organizations to understand more fully the individuals they serve and to build support systems that enable their inclusion in all aspects of life.

 

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11.5 Things TO Say to A Stressed Out Special Parent

We gathered these from some of the funnies and smarties on our Facebook page.

1)  “Let the kid come hang out at my place for a bit, I’ve got this!”

2)   “Leave the kids with the husband and let’s go out for dinner. And drinks. Lots of drinks. And dessert.”

3)   “How can I help? ”

4)  “Can I watch your kid for you?”

5) “This too shall pass.”

6) “This too shall pass, but in the meantime, do you want to go for drinks?”

7) “Just breathe. You are not alone.”

8) “You’re doing a great job! Hang in there!”

9) “Let me do your housework while you get some rest.”

10)  “I’ll take your kids for you. You deserve a break.”

11)  “Here’s a winning lottery ticket. Now hire an assistant and book a vacation while I clean your house.”

11.5) “How do you stay so young looking. Do you use Oil of Olay?”

What would you like someone to say to you?

 

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She Did It! Katie Graduates High School! Watch her Speech!

A heartwarming graduation reflection

In elementary school, when Gina’s daughter, Katie (diagnosed with Asperger’s), was struggling with fitting in, she would often say to Gina, “Why am I different Mom? It’s not fair! I want to be like everyone else.”

Heartbroken, Gina didn’t know how to respond, particularly since at the time,  she felt the same way.

Why did her sweet daughter have to be different? 

Luckily, Katie was blessed with a Godmother, Patty, who was able to offer some insight. One day, Patty presented Katie with a book, The Little Engine That Could.  She told Katie that the “Little Blue Engine” in the story, reminded her of Katie because things are not easy for Katie, but she never gives up.  Eventually, the book became part of Gina and Katie’s bedtime reading ritual and Gina would often tell Katie, “You are that little engine. You eventually get where everyone else is; it just takes a little longer. And, you have something those other trains in the story that go fast don’t have;  you have heart.”

Well, we are happy to announce that Katie, our now-not so-Little Engine made it to one destination — high school graduation. On Saturday, June 8, she, along with nine of her peers, graduated from Willow Hill School, where she has spent the last 7 years.

Willow Hill’s graduation ceremony is unlike others. Each student has the opportunity to make a speech and share their reflections on what graduation and the school has meant to them. For Katie and all our family, it was a bittersweet day. She was thrilled to hit this incredible milestone, yet deeply saddened that her beloved grandmother (our cute little mother) didn’t live to see it. Katie’s grandmother loved Willow Hill, where she thrilled in watching Katie’s amazing theater performances.

Though Katie breaks down when talking about her grandmother, her story is a very uplifting one. She nearly fell apart in elementary school, but through the support she received from family and friends and through the teachers and school that believed in her, she was not only able to graduate high school, but also will  head  off to live at college in the Fall.

Later that evening at Katie’s graduation party, one of the fathers from Willow Hill approached Gina and said, “Katie’s speech touched my heart. I turned to my wife and said, ‘I don’t know this person she’s talking about who passed away, but I can feel her. She is right here watching.I’ve never felt so strongly about anything.'”

Watch Katie’s Graduation Speech. And in the spirit of our amazing special children, tell us about an accomplishment your special child achieved.

 

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Change of Graduation Plans

If all went  according to Gina’s “perfect” plan, her daughter Katie would be graduating today with the public high school. But God and life had a different plan for her and Gina  couldn’t be more thankful by the path he chose for her and for the entire family. Early on, when Gina mourned the loss of the life she planned for her daughter, she wishes she had known that this special path they are on is where they were meant to be. Along the way, their family has learned so much about love, life, resilience, family, and compassion. They have met people they never would have met. Appreciated things that other people  simply take for granted. And learned that no matter what they face, they will get through things together. When Katie was diagnosed with Asperger’s 10 years ago, Gina feared Katie would not be part of this day. She was right; she won’t be. Instead, she’ll be graduating next week with just 10 other students from the school that showed her what she is truly capable of becoming in front of the faculty and staff that have helped her become the proud, smart, accomplished, and lovable young woman she’s become. Congratulations to all the graduates of the Class of 2013.

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Wisdom of the Day

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth Kübler-Ross
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CAST YOUR VOTE in the “Picture This” Contest

The forgetful Promotions Department at Shut Up Industries is pleased to announce the finalists in our Picture This Contest. For this spirited imperfect competition, we asked special children age 16 and under to submit their illustrations that  show their imperfect mother, father, or caregiver in a natural state.

Help us pick the winner by casting your vote for two of your favorites below. Simply leave a comment with the selection numbers of your choice. The two drawings with the most votes will each receive a $50 VISA gift card. VOTING ENDS 8:00 p.m. WEDNESDAY, MAY 22.

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Therapy Gone Bad

 

At the risk of boasting (something we fight against daily), we consider ourselves experts in the area of imperfection with particular expertise in professional therapy. We don’t provide it; but seek it (often). One need only look at our check registers or bank statements to draw that conclusion, “Wow, Pat! My last five purchases were to Family Therapeutics.”

“That’s great, Gene. Five more, and you’ll get that pill organizer  you’ve been looking at.”

Our experience with therapists for our children and ourselves makes us somewhat experts on the types of therapists to avoid.  Here are some in particular:

Narcissistic Therapists: “Enough about you, Doc. Can we talk about my problems now?”

Over Reactive Therapists: “Doc, could you hold your gasps until after I finish my story?”

Projecting Therapists: “Look Doc, I’m sorry your teenager doesn’t listen to you, but this session is about my disrespectful teenager, OK?”

Poor Business Therapists: “What do you mean you don’t accept credit cards? My family was hoping to get rewards and go to Disney on our issues!”

Quiet Therapists:  “Doc, are you there? Wake up!”

Judgmental Therapists: “Oh, you mean like YOU never run away from your home?”

To bring a little humor to the subject of therapy, P & G have put together this short video.  Take a look and then tell us what type of bad therapist you’ve encountered.

Therapy Gone Bad

 

 

 

 

 

 

 

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Imperfect Boys Will Be…Well…Imperfect Boys

 

Just when we thought we’d heard every outrageous school call possible (i.e. “Your son was caught streaking down the hall at school.”), imperfect parents on our Facebook page have surprised us again with these shocking and funny calls they received about their boys.

” Your son is okay, but he duct taped his eyebrow and then he peeled it off and now his eyebrow is missing and he has glue stuck where his eyebrow used to be and a red rash.”

“Your son did #1 in a trash can. Allegedly.”

“The aides have a bet going and they want to know if your son’s middle name is really huggybear?”

“‘I’m calling because we don’t know what to do’…” Says the ‘autism expert.'”

“Your son has drawn a very sweet picture of you reading in bed with him and his sister for our Original Artworks project — it’s really such a sweet picture. It’s just that he drew you with no shirt on.” Explanation #1: Original Artworks gives parents the chance to purchase a variety of items — mouse pads, coffee mugs, key chains, etc. — featuring their child’s artwork. Explanation #2: No, I have never read to (or done anything else with) my children with no shirt on!!!

“Your son has taken all the screws and bolts out of his teacher’s desk and it has collapsed on the teacher’s lap.”

“Your son got ahold of scissors and cut his shirt completely in half.”

“Your son fell into a tank of sharks and rays. He’s fine.”

“Your son just ate a page from his science book. We are going to have to bill you.”

“Your son has no pants on. He said you didn’t give him any.”

“Your son’s lunch today was too distracting.
”

“Your son swallowed a piece of dry wall. We called poison control and they said to just make sure he drank plenty of liquid.”

“Your son licked the principal. And his shoe. And the desk. But, not in that order.”

“We need you to come get your son out of the bathroom. He’s flooded the boys’ room and everyone is afraid to go in.”

“Your son took off his pants and was smacking another child with them because the other kid  made fun of his pants.”

Do you have a shocking school call to share about your son or daughter? We’d love to hear it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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10 Things I’d Rather Be Doing Than Shopping at Walmart

I'm goin' in...

 

 

Today, I had to put on my big girl panties and do something I hate doing (not cleaning, silly); I had to go to Walmart. I know, I know, there are a lot of people who love Walmart and their rollback prices, convenient hours (I think the Walmart in Hell is open 24/7), and of course, smiley stickers. I, however, am not lured in by any of it.

But there is something that draws me to face my fears and walk the aisles of Walmart month after month — better Pharmacy prices. What can I say? I’m  a big sucker for a good Prozac palooza!

Don’t get me wrong, I do have to sacrifice a lot to save. The Pharmacy is quite busy, as I realize every time I have to call their automated system to refill the meds. (“Your prescription will be ready for pickup  in May of 2032. If you’d like an earlier date, say May of 2024, press 1.”).

I also hate the fact that I have to have a “private” consultation with the pharmacist before I can “get the goods” (by private, I mean right there in the middle of the store next to the busy Doritos aisle).  What’s most disturbing is that often, I know more than the pharmacist (“You forgot irritability and increased eye rolling”).

Today, as I was waiting in the long line for my turn (Clearly, the deli could teach them something about efficiency. Nobody needs to consult with me about my choice in genoa salami), I thought about all the unpleasant things I’d rather be doing than standing in line at Walmart. And without further adieu, here they are:

  1. Weighing in at Weight Watcher’s after Supersizing at McDonald’s.
  2. Working behind my carefree, relaxed Aspie on an assembly line.
  3. Taking a comprehension test after reading the Parent’s Rights brochure.
  4. Hosting a sleepover with the entire 8th grade class.
  5. Driving Storrow Drive (scary highway in Boston) with my new teen driver.
  6. Driving anywhere with my new teen driver.
  7.  Chasing a tornado with my weather-obsessed, anxious daughter.
  8. Getting behind the Duggar family (all 19 kids) at Dairy Queen.
  9. Modeling in my bathing suit at a Mean Girl Convention.
  10. Eating ketchup sandwiches with my sensory kid.

How about you?  Do you like shopping at Walmart? Or is there something far more unpleasant you’d rather do?

 

 

 

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Story of the Day

A woman on our Facebook page wrote:

“My autistic brother is currently going through a virtual surgery phase. At the moment, he is sitting at the computer performing a liposuction procedure. When mom asks him to do something, his response lately has been: ‘not now mom, I’m in surgery!'”

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Breaking News… Introducing Picture This… Our New Imperfect Contest

How does your special view you?

 

Do you ever wonder how our special children really see us?  Now’s the chance to see for yourself in our new spring contest — Picture This.  For this spirited imperfect competition, we’re asking special children ages 16 and under to submit their illustrations that  show their imperfect mother, father, or caregiver in a natural state.  Winners will receive a a VISA gift card – and of course, the glory of knowing they won a Shut Up Contest (American Idol has nothing on us).

Here are the contest rules:

  • Drawings/colorings must be submitted by April 30, 2013.
Entrants must be no older than age 16.
  • All entries should be sent to info@shutupabout.com with the subject “Picture This Contest.” Note any emails not with this subject may NOT be considered. (P and G are distracted and may miss them. “Oh look a shiny penny!”)
  • Entrants must include their name and age and a brief description of what their parent is doing in the photo. Note: Parents may scribe for their children.
  • Two (2) winners will be selected. Each will receive a $50 Visa gift card.
  • Entrants and their parents grant permission for Shut Up Industries to promote photos for imperfect publicity purposes.
  • Five (5) finalists will be selected by Shut Up Industries and posted to this Blog for voting.
  • Voting will begin on Friday, May 4 and will run through Sunday, May 6 when the winner will be announced.
  • Contest reminders will be set up on our Facebook page.

Selection Criteria:

Finalists will be selected for creativity, humor, and reality.  

Winners who receive the most votes on our blog will be selected.

 

Good luck and may the best imperfect win!

 

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You Know You’re A Little Too Anxious to Get Out of the House When…

 

You back your car into the garage door.

You consider a visit to the mailbox a “mini vacation.”

You look forward to visiting the dentist.

You forget to put on your pants (and don’t bother to go back and get them).

You pass your spouse coming home from work in the driveway. “Welcome Home, Hon. See ya!”

You ask door-to-door salesman if they need any extra help.

You can’t wait for your next mammogram.

You’re giddy when your mother-in-law comes to visit.

You find yourself braless at the grocery store.

Your neighbor asks for a cup of sugar and you bring it over along with an overnight bag.

You have practice fire drills once a day.

 

 

 

 

 

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You Know You’re Raising a Child with Mental Health Issues When…

You took the spices out of your spice rack and replaced them with prescription bottles.

He tells you “Ma, we need to up my meds.”

The pharmacy staff pulls your meds off the shelf before you even get to the counter.

You are bleeding out on the ground and your child asks for you to get them a cookie.

You line up the medication in the morning and it resembles a village of pills.

The receptionist at your child’s therapy office is your therapist while your kid is at their appointment.

The school has your number on speed dial.

You get excited to go the grocery store alone.

You consider it a great day when you haven’t heard screaming for an hour.

When time in the dentist’s chair counts as “me time”!

When you send medication to school with lunch money.

When you know it’s medically necessary for YOU to take a Xanax 15 minutes before she gets home from school, and you fantasize that you can give her one too.

You consider adding Prozac to your meatloaf recipe.

When your therapist responds with “wow!”

When you have a bag of supplies like snacks, water, phone charger, etc., packed for your visit to the ER.

When your walls look like Swiss cheese.

When your child tells you that he’s taking Abnormal Psychology and you say, “Finally, some homework I can help you with..”

You have your child’s psychiatrist’s cell phone number and she tells you not to hesitate to use it.

When you tell your daughter, “I hope you have a better day tomorrow” and she responds with “I hate you”.

Tell us how you know you’re raising a child with mental health issues. 

 

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Imperfect Parental Thought of the Day

“You need a license to drive, but any crazy distracted lady can become a mother. Although in my defense, I’m sure I’m not the first mother to mix up Crazy Hair Day and School Picture Day.”    Gina Gallagher, Imperfect Mother of Two

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The Not-So-Bright Shut Up Sisters Speak To Bright Future Teachers

 

P and G were honored to speak last evening at the Kappa Delta Pi International Honor’s Society Induction Ceremony for Educators at Fitchburg State University in Fitchburg, Massachusetts. Pictured with the not-so-bright Shut Up Sisters  is Nancy Murray, Chair of the Graduate Program in Moderate Disabilities, and our beautiful cousin, Danielle Correia, who is an FSU student and member of Kappa Delta Pi. They even gave us Fitchburg State sweatshirts. Sadly though they did not invite us to any ragers. The students were really interested in learning about the parental perspective on children with disabilities. The future looks bright.

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Funny IEP Goals: Laugh Your Behind Off in 15 out of 15 Opportunities.

 

To those who aren’t familiar with them, Individual Education Plans or IEPs as they are known on the “imperfect street,” can seem like just some harmless reams of paper stapled together.  However, to those who have children with special needs, the IEP is deadly. In fact, according to an imperfect survey we recently conducted, the IEP is the leading cause of death among special needs parents. [Note: the margin of error on this survey is quite large since we were drinking wine when we conducted it.]

We would like to offer special parents a different perspective on the IEP: It should not be a source of stress, but rather, a source of humor. One need only review these actual IEP goals parents on our Facebook shared to prove our point:

“Katie will demonstrate crossing the midline in 8 out of 10 opportunities.”

“John will not take his clothes off at school in 7 out of 10 opportunities.”

“D will do homework if his parents see it to be appropriate. (BTW– they NEVER found it appropriate.) “

“Alex will work on holding his pencil the right way to form the letter right.”

“C will not get more than one F on any class assignment in any class during each card marking.”

“J will smile at least one time per day.”

“S will appear to be paying attention during instruction.”

“J will raise her hand 4 out of 5 times and have appropriate social interaction 4 of 6 times.”

“Ryan will climb stairs alternating feet without using a handrail.”

“DD is to sit in a chair during a lesson without crying for 3 minutes on 4 of 5 attempts.”

“L will control his meltdowns 7 out of 10 times.”

‘Wyatt will play on the playground without bumping into things or falling 8 out 10 times.”

“Grace will stay in the classroom 4 out of 5 times.” (FYI — she quietly “left” last year and was found in the parking lot an hour later.)

“C will brush her hair and make a ponytail for 4 out of 5 trials. (It actually was a useful OT goal.)”

“D will orient herself in space. I asked if she was training to be an astronaut.”

Tell us about a funny IEP goal on your child’s IEP.

 

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Top 13 Reasons You Know You’re Raising a Child with Sensory Issues…

 

#13) You don’t care if you end up in prison for cutting pillow tags.

#12) You wonder if the reason Rapunzel’s hair was so long was because she screamed at the hairdresser and her mother couldn’t take it.

#11) You seek out children with buzzcuts as playmates for your child because he doesn’t understand that hair pulling feels bad to most people.

#10) Putting on your child’s seatbelt counts as your daily cardio.

#9) Your child wears jogging pants to his First Communion.

#8) You equate Disney World with Hell.

#7) When your child is missing and the first place you look is on top of your refrigerator.

#6) Your son tells you the bug he ate was really crispy.

#5) You generously tip your child’s hairdresser — with Prozac.

#4) Your child goes to sleep with sweatpants, ski pants, snowmobile suit, and  a full backpack and it’s the middle of summer.

#3) You carry ear protection meant for the shooting range in your diaper bag.

#2) You don’t care if your child looks like Edward Scisscorhands because you hate cutting their nails.

#1) You’re worried more about the sound of the fire alarm than the actual fire.

 

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Great Poem by Christine Hrinda

Thanks to the wonderful Mom who shared this on our Facebook page. 

My brain may work different

That much we know

But there is much more

That I have to show

My hair may be messy

I hate using combs

Is there someone like me

That lives in your homes

My pants are elastic

I will not wear jeans

But I do not know

What all of this means

To me I am perfect

To Mom and Dad too

Is it really so bad

That I’m not like you?

– Christina Hrinda
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You know you’re addicted to Facebook when…

Houston, we may have a problem.

  • You call your dog by writing on his FB wall.
  • You have to check your spouse’s marital status to see if he’s still mad at you
  • You get in a heated political debate with your neighbor’s hamster.
  • You list your Facebook address for your child’s emergency contact information.
  • Your child lists Facebook on their reading log and you sign it.
  • You post photos of you going through the car wash.
  • You find out your area is experiencing an earthquake by reading other people’s posts.
  • You’re up all night counting your virtual sheep.
  • You accept a friend request from someone who scared you senseless in Junior High.
  • You leave a confession on a priest’s wall.
  • One of your “friends” is your third-grade teacher’s cat.
  • You’ve seen your mailman’s son’s report card.

 

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A Vision of Hope. Meet Christopher Duffley.

We’ve often said that there are many blessings on the journey of raising special children — compassion, appreciation for the little things in life, lifelong bonds with pharmacists and bartenders (we kid of course, well, sorta). We believe the greatest  one, however, is  the amazing people you meet along the way. Over the past seven years, we have had the privilege of traveling around the country and meeting the most loving and inspirational special needs families and children. One such family is the Duffley family of New Hampshire. We first met them when we were speaking at the Grace Curtis Conference in Connecticut. We had never heard of the Duffley family or their son Christopher who sang at the conference. We were amazed as we watched this beautiful then 10-year-old boy get up and sing Lean On Me. Christopher was no ordinary performer. He has autism and is blind.  And, he had a very difficult start to life.

Christopher’s life began in May 2001 when he arrived 12 weeks early. At the time, he weighed just 1 pound and 12 ounces, and  tested positive for cocaine, as a result of drug abuse by his biological parents. He spent five months in the hospital and was eventually placed in foster care in Florida. In 2003, he was adopted by Stephen Duffley and his lovely wife Christine, who was Christopher’s biological aunt. With the love of these wonderful people and his siblings, Christopher has flourished and developed into a happy young man with a talent for singing. Christopher’s talent has taken his family to many places around the country. From Fenway Park, to autism galas, to churches around the country, Christopher has warmed the hearts and souls of thousands of people.   You can watch his amazing music videos on youtube, including this one. http://www.youtube.com/watch?v=Q9jqI4svrNY.

Christopher was also blessed with a wonderful sense of humor. He demonstrates this in this  hilarious video “Blind Autistic Brother Does My Makeup”  with his beautiful sister Grace.  Check it out and share the link http://www.youtube.com/watch?v=a8vQBJOaNDo. To learn more about Christopher and the Duffley Clan, visit his website http://christopherduffley.com.  

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Blue is in the air! It’s World Autism Awareness Day.

If  you see a lot of blue today, don’t think we’re being invaded by Smurfs. Today is World Autism Awareness Day, which is why you may see the color blue lighting up homes, bridges, and buildings. (Kudos to Kmart for jumping on this trend years ago with their famed “Blue Light Specials.”)  In celebration of World Autism Awareness Day, we asked parents on our Facebook page to complete the thought below.

You know you’re raising a child with autism when…  

Here are some of their very funny responses:

You have an entire deep freezer dedicated to one child who only eats five foods, including chicken nuggets, which have to be a certain brand and a certain shape.

You run when there is a sale on elastic waist pants and seamless socks.

There is a meltdown because your daughter blew all the bubbles and you forgot to buy more.

Your water gets cut off because your bill tripled without you realizing it was due to your kid’s flushing stim.

All your furniture has been chewed by your child and not the animals.

You panic if you run out of tomato sauce/ ketchup.

You have a parade when your child gets invited to a birthday party.

You carve up peanut butter sandwiches for Thanksgiving dinner.

You avoid bathrooms with loud toilets.

Your child’s dentist uses laughing gas on himself.

You have nine of the same blue t-shirts in the closet, all lined up by shade and hue.

The toy cars are put away in a line, biggest to smallest and color order….. BY ME….to prevent the meltdown that would otherwise ensue.

You think 3:00 a.m. is a perfectly normal time to be watching Thomas the Tank for the 385th time this week.

You are used to looks of scorn from random members of the public. In fact, you have learned to give them a score them 1 out of 10 for the horrible looks they give your son (anything below 5, and you are allowed to give them pointers on how to look more horrified).

You spend 10x as much on therapies than you would on extracurricular activities.

You actually spend enough to warrant the medical deduction off your taxes.

You know your insurance company’s and state regulations on healthcare coverage better than the professionals do.

Your neurotypical child is crying because the Play Dough model of the solar system he made for science class was eaten as a snack when he went outside to play.

Naked is the preferred way to jump on the trampoline.

When family thinks you’re “antisocial” and get all insulted because you don’t accept invitations to their homes, even on holidays, when in reality it’s because their homes aren’t autism-proofed or autism-friendly.

You moved the couch to make space for a mini trampoline in the living room.

Your spare bedroom is now called the “sensory room.”

Your child doesn’t have one pair of jeans.

Nothing phases you.

You naturally take the same route regardless of the fact that A) you’re not on the way home from school; and B) your child is not even in the car.

And lastly…

You’re wearing head-to toe blue today;  your porch light is blue; your kid’s bedroom light is blue, and your son couldn’t be happier over “his” day.

To see more responses, visit our Facebook page.  Oh and tell us how you know you’re raising a child with autism.

 

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Inspiring Story of the Day from the Alexandria Salazar Fan Club

In between our virtual farming and sketching on our first-grade teachers on Facebook, we came across this beautiful photo and story from Alexandria Salazar. Her story is so moving that we’re sure she now has her own special needs Mom and Dad fan club. When we contacted her for this story, we asked Alexandria if she would mind doing us a favor  and having 20 children of her own someday. (We kid, of course, 19 would be fine.) The world is definitely a better place with her in it. Thank you Alexandria! You have great taste in men!  James is very handsome!
She shares:
“I got asked to prom my Junior Year by this Guy named James. He has Down syndrome and nobody wanted to go with him. When he asked me I said of course, not thinking to much into it. I remember when his mom called me on the phone crying and thanking me for going with him. She offered to pay for my dress, hair, and makeup because she said she knew nobody would’ve wanted to go with him. I told her it was okay and that I was happy to go with him. I remember hanging up the phone crying to my mom about how honored I was, to actually go with him. Prom night was kinda of hard to actually enjoy at first because James was kind of all over the place, but then I remembered that this was HIS Senior Prom. Not Mine. So after that, I went a long with whatever he wanted to do and I ended up having so much fun! Out of the 4 proms I went to during high school, this was actually my favorite.”
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Hey “experts!” Shut Up About What Our Kids Can’t Do!

Katie accomplishing something the experts said she'd never do -- crabwalk.

 

In life, there are two kinds of people: optimists and pessimists. For a time, we could have been considered in the latter category. We were “glass-is-half-empty-kinda gals.” (Unless the glasses were filled with wine or beer. In that case, we were “glass-is-completely-empty-kinda gals.)

We really couldn’t help it; we were raised by two loving, but highly pessimistic parents. Our father, a “Doubting Tony,” was particularly pessimistic:

“Patty, you probably won’t be Mrs. Bobby Sherman.”

“Gina, you’re a good baseball player; but I don’t think you’ll make the Red Sox roster.”

Looking back, we see that our Dad’s pessimism was a protective measure; he figured if he prepared us for the worst we wouldn’t be disappointed if things didn’t work out.

One would think this pessimistic paternal practice would have prepared us for the negativity  that surrounds us as special needs parents today. But it simply didn’t. We were still shocked by the negativity that came from the very people we relied on to help us and our children – pediatricians, teachers, therapists, etc. It seemed like the moment our children were diagnosed, we were bombarded with “I THINK THEY CAN’TS!”

Many parents become so programmed to the negativity that they  begin to lower their own expectations and focus not on the things their children can do, but the things they can’t do.

Gina certainly fell into this when Katie was diagnosed with Asperger’s syndrome. She met with clinicians and teachers who constantly told her what Katie couldn’t and wouldn’t ever be able to do. “Mrs. Gallagher, she can’t hold a pencil properly, cut with scissors, and she may never crabwalk.”

It didn’t take Gina long to be sipping their negative Kool Aid. At age seven, when Katie was scheduled to make her First Communion, Gina prepared for the worst. “Father forgive me for my child is about to sin by spitting out and gagging on the Eucharist wafer.”

She was so convinced that Katie wouldn’t be able to take the Eucharist that she missed the joy of Katie actually experiencing this spiritual passage (Writer’s Note: There was no gagging or spitting, though Katie did chew it like it was a wad of Bubble Yum.)

As Katie got older, the “couldn’t list” got even longer – and scarier. Experts said she wouldn’t be able to hold a job, go to college, or ever live independently.  Gina even heard negativity from an advocate she hired to help fight for services for Katie. Gina nearly fell over when the advocate announced in a Team meeting, “Let’s face it; Katie will probably never go to college; she won’t pass Geometry.” Gina was stunned and furious. “Look, I don’t need to pay you $150 an hour to be negative. That’s what the rest of the team does for free.”

Now that she’s older and wiser, Gina, a newfound optimist, knows better than to doubt Katie. A 17, Katie has accomplished ALL the things they said she’d never do. She has a part-time job at a grocery store, passed Geometry, and  will graduate in June.  Oh and by the way, stupid advocate lady, she passed Geometry and is going to live away at a four-year college in the fall. Even more exciting, Katie can crabwalk (see photo).

No one is more aware of the pessimism of others more than Katie herself. During her college interview, the admissions counselor asked her, “What’s one thing you’d like us to know about you to help us with our decision?”  Katie responded by saying, “Well, my whole life people have doubted me and I’ve always surprised them by what I can do. If I want something, there is no stopping me. I want to go to college here!” (She shoots! She scores!)

On our Facebook page, we recently asked parents to share what they were told their children would never do and are now doing.

“They said he she wouldn’t eat without a feeding tube. She eats with her mouth.”

“We were told my son would pretty much be a bump on a log and not do anything. He is now the most active two-year old with the best personality ever.”

“They said he would never hear; he can.”

“They said our son would never THRIVE!. He is thriving.

“They said our son couldn’t handle  mainstream kindergarten. It’s tough; but he’s handling it.”

“Docs said he would not walk and may be intellectually disabled. Now he runs and rides a bicycle without training wheels!! OK, with a crazy sense of balance, but he’s doing it!”

“They said he would never say ‘I love you,’ never hug me, never have friends, and never be able to function on his own.” Wrong! Wrong! Wrong! And wrong!

“They said he wouldn’t live.”

“They said  she wasn’t going to survive the brain injury. She not only survived, but also defies the odds everyday. I was told to settle and I refused to settle.”

“They said, he’d never read or write. He can do both.”

“They said she wouldn’t live past 12. She’ll be 17 in May!”

For more of these inspiring stories, visit our Facebook page.  Or better yet, leave a comment to tell us what your special child has accomplished despite what the experts said.

 

 

 

 

 

 

 

 

 

 

 

 

 

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Take Out Your Number 2 Pencils and Your 1/5 of Vodka…It’s MCAS Time.

 

When I was a kid, I loved spring. It meant longer days, the start of the Red Sox season, and that extra jump in my step that signified the arrival of the Easter Bunny. Now that I’m a mother, I hate it. And it’s not just because it means I can no longer hide my winter weight behind bulky sweaters. No sir; I dread spring for a much bigger reason — it is  the time for MCAS Testing.

The experts say MCAS stands for the Massachusetts Comprehensive Assessment System (MCAS). In my home it stands for Mother Could Actually Stroke. The very thought of the MCAS brings sheer terror to my two already anxious children, making them very difficult to deal with. Of course, the school rumor mill doesn’t help lessen their anxiety.

“Mom, kids say that if I don’t pass this test, I won’t be able to graduate or have children.”

The anxiety for us mothers who have to deal with MCAS panic is pretty high as well. In fact,  imperfect studies have shown that there is a surge in alcohol and pharmaceutical sales during MCAS season. Many of us have even resorted to  desperate measures to get our children to pass. “Look, Mrs. Crabapple, if you give the kid some answers, I’ll throw in a little extra something with your apple this year. If you know what I’m saying.”

Last year, after several unsuccessful attempts (and strokes) my daughter, Katie, finally passed the MCAS Math test, making her eligible to get her diploma with her classmates this spring. We were all thrilled and relieved, especially me. “GINA GALLAGHER, YOUR DAUGHTER KATIE JUST PASSED THE MCAS MATH TEST AFTER 75,000 ATTEMPTS. WHAT ARE YOU GONNA DO NOW?”

“I’m checking into rehab!”

With one MCAS graduate, I now only have one more child who has to deal with it — my eigth grader, Emily. Unfortunately,  she is even more anxious and gullible than Katie about the test. “Mom, is it true you go on Death Row if you don’t pass?”

She was a nervous wreck when I sent her off to school this morning with a pack of erasers, a healthy snack, and a fifth of vodka (just kidding, it was rum).  If I could have done anything to get her out of the test, I would have. Lord knows, I tried.

“Look, Ms. Bliss, Emily can’t take the MCAS test today. Her dog ate her number 2 pencils.”

“Mr. Custodian, I’ll give you $100 bucks if you pull the fire alarm.”

But sadly, no matter how much I try to shield her from the anxiety of this test, there’s nothing I can do. I’ll just have to there for her and assure her that everything will be OK.

“Honey, I swear, you only need a license and  blood test to get married; you don’t have to show your MCAS scores. Daddy and I never would have qualified to marry.”

Tell me how do you feel about MCAS or your state’s assessment test?

 

 

 

 

 

 

 

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A Special Tribute from a Special Granddaughter

A young Em and her beloved grandmother.

When you lose a mother, there is so much to mourn: the mother from your childhood and the trusted friend from adulthood. Patty and Gina have deeply missed those mothers as well as another: the mother who loved our children. Anyone who knew our mother knew how proud she was of her seven grandchildren. The feeling was very mutual as her grandchildren all loved her and shared a special relationship with her.  Since her passing, her grandchildren have openly talked about their feelings toward the loss of their grandmother.

Well, all except one: her youngest granddaughter, Emily.

Emily was 12 when her grandmother passed away. At that time, she suffered great anxiety and depression and wasn’t strong enough to attend the funeral services. Gina, Emily’s Mom, was really concerned about Emily because she didn’t cry or even talk about the loss of her grandmother. It was as though Emily’s grandmother never existed. Gina knew it was just too painful for Emily and that she just wasn’t ready.  Emily even avoided visits to see her grandfather because the pain of seeing him without her grandmother was too much to bear.

While all our mother’s grandchildren had a special bond with her, the one with Emily was particularly special; they were best buddies. Our mother was there for Emily during the most difficult time in Emily’s life: when Emily had to be removed from the public school to be tutored at home for two years. During that time, Emily grew depressed and lost all her friends. To help out Gina and to cheer up her sad granddaughter, our mother would often take Emily during the day. Our father was astounded by their connection, “Gina, your mother does everything with her. They bake, they shop, they do puzzles. They even clean. She really gets Emily laughing and giggling. I don’t know where your mother gets the energy. I  don’t have it.”

Earlier in the year, 18 months after her grandmother’s passing, Emily surprised Gina by opening up. They were driving in the car when Emily said:

“My friend Tim lost his best friend.”

“Oh Honey, I’m so sorry for Tim. Who did he lose?”

“It was his dog, Mom. I told him that I understand and that I lost a best friend, too.”

“You did?” Gina asked surprised. “Who did you lose?”

“I lost Nana, Mom. She was my best friend. She was always there for me.”

Gina was saddened, but relieved that Emily was finally opening up.  She didn’t know it at that time, but that day was a turning point for Emily. Little by little, she began talking about her grandmother and looking at pictures. And recently, Gina woke up to check her Facebook page and found the following posted from Emily. Words could not describe Gina’s pride for her mother and for her daughter who is so much like her.

my tribute to nana
because of you i am kind

because of you i know how to clean more

because of you i learn not to sweat the small stuff

because of you i have a kind loving heart

because of you there is a reason to try new things

because of you life is good

because of you i have some 1 to talk to

because of you i am more caring

because of you i pick the right thing to do

because of you i dont worry as much

because of you i think of people more than myself

because of you i laugh alot

because of you we had all those great times together

because of you i have self esteem

because of you i think before i do things

because of you i have a humungus heart

love,
your buddy (emmy)

Do you have a story about your special child and their grandparent? We know Emily would love to hear it.

 

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Scary/Yet Somewhat Comforting Quote of the Day

Yesterday, when Gina asked her daughter Katie if she was doing a good job at her part-time job at the supermarket, Katie replied.  “Sheesh, Mom! Gimme a break! I’m only lazy at home.”  Gina didn’t know whether to feel comforted or frightened.

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Laughing our Behinds Off (If only that were literal)

 

Read to your children. It actually was one of the few parenting rules I followed (though you’d never know it since my teenagers now only open books with Lifesavers in them).  When my girls were young, I read to them every night, even when the books they selected became mundane. “Yeah, yeah, goodnight moon. Goodnight stars. Goodnight blah, blah, blah.”

And now that my kids are teens, some of the books they used to love don’t even make sense to me anymore  “Pat, why would that mother look for her runaway bunny when she can get a few hours of peace and quiet?”

There was, however, a series of books I never got tired of reading to my children — Amelia Bedelia books. For those who have not met Amelia Bedelia, she is a literal housekeeper — a loveable, hard-working lady who makes sponge cake using real sponges. Back then, I didn’t know how much I would relate to Amelia Bedelia (we bake similarly) or that I’d be raising two children with language-based learning disabilities who think just like her.

Their disabilities make them very concrete thinkers (the non-cement kind) and cause them to struggle with understanding the nuances of language. My oldest daughter demonstrated this after I had a discussion with her about how important it is  for “Mothers to know where their children are and what they are doing at all times.”  A few minutes after our discussion, I found a note on the kitchen table that said,  “Mom, it’s Katie. I’m in my room and I’m flapping my hands.”

My daughters’ language difficulties have made me more aware of the words and clichés I throw around (no need to duck).  They have also made me realize that in the special needs community, there are lots of Amelia Bedelias.  And in the spirit of that loveable character, here are some funny stories shared by special needs parents about their literal thinkers:

  • After a lot of umming and ahhing, my husband told our child with autism to “spit it out.” Not surprisingly, he followed up with a few minutes of spitting.

 

  • I said, “Get out of here!  Like no way. You’ve got to be joking!”  My son got up, walked out of the house, and stood on the porch not sure of what to do next!

 

  • I told my little one “Get me all the empty hangers you can find.”  He came back with like 100 hangers. I was impressed until I went to my closet and saw that he took my clothes off them and brought me the hangers.
  • When I was a nanny I wore a crucifix necklace. The little girl I watched pointed to it and asked, “Who is that?” I said “Jesus” and she said,” I didn’t know he was so small.” She is 20 now and goes to Columbia University!
  • My son was asked if he was ready for therapy. His comment was “Duh I signed the paperwork.”
  • I told my kids I was going to sell them to the gypsies if they didn’t behave. They believed me and cried or hours.
  • I told my then eight-year daughter with a form of autism that I needed to jump into the shower. She said, “No Mommy. Don’t jump in the shower. You’ll fall and hurt yourself.”
  • An elderly man asked my son “What are you going to be when you grow up?” ‘ My son said, “A man.”
  • My daughter said, “Yesterday you told me today was tomorrow. Are you tricking me?”
  • My son’s speech therapist told him, “I think you need to work for Apple when you grow up.”  My son replied, “Yeah, Grandpa says I need to eat my veggies, too.”

Do you have a funny, literal story to share? Tell us about it. We’re all ears (well, not really).

 

 

 

 

 

 

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I Wish I Knew Then What I Know Now (Gina)

I’m the first to admit; I have many fears. The sight of a snake, spider, or a call from the school on caller ID can send me into full-blown panic. I also live with a fear of heights and roller coasters, and according to my husband, the kitchen stove (“Don’t be afraid to use it Gene; it won’t hurt you.”). I can, however, proudly say that there is one fear that I have conquered.  A fear so great that it kept me from sleeping, experiencing joy of any kind, even wanting to watch the child I loved grow up.

That fear? Autism.

While my fear of spiders and snakes and cooking has been with me since childhood, my fear of autism didn’t come until I was well into my thirties. Before then, I had never even heard of autism. I didn’t know anyone who had it, nor did I ever consider that I could have a child impacted by it when I was pregnant. (Note: I was more worried that I’d give birth to a baby calf, given my excessive  pregnancy weight gain.)  Autism didn’t even enter my consciousness when my daughter was displaying the classic signs of it as a toddler – poor motor skills, hand flapping, aversion to loud noises.

Though autism came to me late in life, my introduction to it was quick. It actually came by mail in the form of the results of an independent neuropsych exam done when my daughter was in kindergarten. The report said she had Asperger’s syndrome, which was a form of high functioning autism.

Immediately, I raced to the Internet and started researching it. When I saw the results of my searches, I was heartbroken. But as I read on, my sadness morphed into anger, especially when I read that it only affected 1 in 250 kids. I was angry at everyone – myself, my husband, God, and mostly, the  249 other people who didn’t have to deal with it.

If I got that diagnosis today, I’d have been angry with a lot less people.

Today, according to a study released by the Center for Disease Control and Prevention, autism now affects 1 in 50 children.  Whether you view this study as accurate or not, most people will agree that autism is indeed increasing. So today, if I were pregnant, I’d not only have to worry that I was giving birth to a baby calf, but also a baby calf with social issues.

 

What I didn’t know about autism – the positive side. 

The good news about the increase in autism is that there is more information available than ever before. If Katie were diagnosed today, I might have been able to find a blog or online support group that would have told me some of the things I just didn’t see online: the positive side of autism.

Maybe then, I wouldn’t have thought of autism as something that would ruin my life, but enrich it. While it’s true that autism brought great pain to me (watching her fail academically in the public school and struggle with bullying), it has also been the source of my greatest joys – watching her overcome challenges and reach  new milestones (she was recently accepted to the college of her choice).  I would have also known that raising a child with autism brings the gift of compassion, an appreciation for the little things in life, a strong faith, and a knowledge of strengths and resilience I didn’t know I had in me.

Most importantly, I would have known that the very thing I feared would ruin our daughter and our family would actually make us all stronger. And that being the Mom of that  chosen 1 in 250 wasn’t so bad after all.

 

 

 

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Breaking News! Winner of Shut Up School Photo Contest Announced!

The results are in! In a unanimous decision, the Shut Up Contest Committee has chosen the winner of our first annual Adult School Photo Contest. Please join us in congratulating Sharon Jaffe. As the esteemed winner, Sharon gets her choice of any item from the Shut Up Store. Thanks to all (Sharon) who participated. Please join us in congratulating Sharon, who hopefully will not change as a result of this feat. (Well, hopefully she’s changed her style since the photo was taken.) Thanks and congratulations Sharon.

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Ship Out with out Shaping Up! Join the Shut Up Sisters for our First Annual Shut Up & Buddy Cruise

Looking for an opportunity to sail away from your struggles? To connect with other parents and caregivers who share your imperfect parenting philosophy? To relive your childhood Love Boat memories? Patty and Gina invite you to join us and fellow imperfect parents and caregivers  for our first annual Shut Up & Buddy Cruise as we set sail from Tampa, FL, to Cozumel, Mexico, March 7 -11. For details or to book your reservation, visit http://buddycruise.org/shut-up-and-buddy-cruise.aspx.

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Imperfect Contest – Imperfect School Photo

Drop that Powerball ticket! There’s a better, more rewarding way to win big — enter our new Imperfect School Photo Contest.  We’re looking for funny school pictures from your childhood. We’ll narrow it down to 5 finalists and then put it out to voting on this blog.  Finalists will be selected on —

1) The tackiness of the clothing.

2)Funnyness of the pose.

3) Overall imperfect impression

The winner will receive a merchandise item of their choice from the Shut UP Store (subject to size availability).

Sadly, G (pictured here) will not be able to enter as Shut Up employees and family members are exempt. Too bad; it’s doubtful that a tackier shirt could be found. Contest submissions must be made by Saturday, December 1.  Finalists will be posted on Sunday, December 2 for voting. Entries should be mailed to info@shutupabout.com.  Also, when you submit your entry, you grant us permission to share on our Facebook page for kicks and giggles.

 

 

 

 

 

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