Special needs caregivers and parents are always looking for information, tools, and resources to help them help their children succeed. To make finding these resources easier, Total Pediatric Therapy of Somerset, Kentucky has compiled the 115 Best Resources for Parents of Special Needs Children. And it just so happens that our imperfect website, “Shut Up About Your Kid” is on the list. Check it out. http://www.totalpediatrictherapy.com/115-best-resources-parents-children-special-needs/
The Shut Up Sisters are pleased to announce a brand-spanking-new speaking presentation about helping special kids transition to special adults: “Cleared for Takeoff: MOM, GET OUT OF THE RUNWAY!!!” If you’d like to bring this fun, uplifting, helpful, and above all, imperfect workshop to your school, event, fundraiser, or organization, contact us today at 978.857.4566 or via email at email@example.com.
In a shocking and surprising twist, imperfect wife and mother, Shut Up Sister Gina, decided to surprise her hard-working husband by preparing (that’s COOKING, not PHONING IN) his favorite meal in a crockpot. Unbeknownst to Imperfect Gina, the heat of the crockpot actually created a rather large crack in their kitchen countertops (See Evidence Exhibit A). Gina is looking for a pleasant and loving way to tell her husband (who thankfully does not read what she writes) that she is responsible for the crack in the countertop. Gina has provided some possible explanations for telling him, which are outlined below. Please cast your vote for the one you like best or write in your own suggestion. Results, including the result of her marital status, will be shared in a later post.
Cast your Imperfect Explanation Vote:
A) “Honey, I didn’t shrink the kids, but I did crack the countertop.”
B) “Sweetie, I’m just glad our marriage is a lot more solid than our countertops.”
C) “See Lamb Chop, this is why I don’t ever go in the kitchen.”
D) “I’m telling you Snookems, you need a license to drive, but any crackpot can operate a crockpot.”
E) Your suggestion here __________________.
Wasn’t it the great Albert Einstein who said, “Insanity is doing the same thing over and over again and expecting different results?”
Well Al, call me insane.
And while you’re at it, call my imperfect parental brethren insane, too. After all, so many of us seem to make the same mistake over and over again – despite the fact that we get the same result.
That mistake? Continually doubting our kids. Even when they continue to prove us wrong by succeeding. Over and over again.
Maybe the imperfect system is just set up that way. It seems that from the moment our kids with differences are born, many of the books we pick up tell us what kids like ours won’t be able to do. And the hired guns or experts we bring in “to help” our kids only hurt them more by presenting them to us as numbers on an intelligence test. Or flat positions on a bell curve.
Before we know it, we start sipping the doubting Kool Aid… lowering our expectations…preparing for and expecting the worst.
I am no exception. There have been so many times throughout my two daughters’ lives when I just assumed they would fail. Come up short. Fall apart.
I felt that way when one was about to be screened for kindergarten.
“Oh well, I’ll just keep her back. She’ll just be the oldest kid in her class.”
I thought that when another was about to make her First Communion.
“Father forgive me because my daughter is about to sin and spit out the Communion wafer. She has sensory issues.”
And despite by erroneous predictions at these and so many other small and large milestones, I continued to doubt my kids at every turn.
“With her anxiety and math disability, she’ll never pass the state test required to get her diploma.”
“She’ll never be able to interview for a job on her own. She has poor eye contact.”
“She’ll never be able to drive a car with those visual spatial issues.”
“She could never live away at college. She’s never been away from home.”
“She might never find someone to love her with her quirks.”
Here’s the insane part, despite ALL these successes, I still doubt them. Just last week, I brought my 17-year-old daughter with sensory issues and anxiety disorder to the oral surgeon’s office to have her wisdom teeth removed. The insurance company wouldn’t pay to have anesthesia. Days before the surgery, she was in full blown panic mode. Going to the dentist was always difficult for her, but this would be more than she could handle.
When I brought her in, I was prepared for a full breakdown. But when the hygienist called her name, she quietly followed her inside. No tears, no protests, not even the usual desperate pleas for me to go with her.
She handled it like a champ.
There in that quiet dental office waiting room (a luxury that has alluded me in my parental dental career), while my daughter’s wisdom teeth were being extracted, I actually gained some wisdom: Maybe after 21 years of being a parent of a child with special needs, I should finally stop believing what I read in books or on test results, and start seeing what my children’s experiences have repeatedly shown me.
After all, wasn’t it the great Albert Einstein who also said, “The only source of knowledge is experience?”
You got that right Al.
The Shut Up Sisters invite you to join us in all our imperfect glory at the First Annual Buddy Cruise Charity Golf Open — Monday, June 13 at Wayland Country Club in Wayland, MA. For just $125 per golfer or $500 per team, you can hack with the Shut Up Sisters, enter to win fun prizes, and enjoy a delicious lunch. A prize will even be awarded for best imperfect drive.
All proceeds go directly to Buddy Cruise, a 501(c)3 that provides vacations at sea for special needs families. To register or learn more, visit golf.buddycruise.org. If you’re interested in sponsoring a hole for your business, sponsorships start at just $100 a hole. Join the fun!
Why can’t we all just get along?
I’m not talking about world peace, though that would be great. I’m thinking about peace a little closer to home – my home.
Why can’t my daughters ages 20 and 17 get along?
Look I’m the first to admit, I couldn’t stand my sister growing up. She was seven years older, but our worlds were light years apart. Now we’re inseparable – co-authors and speakers, business partners, neighbors, travel companions, best friends. We’re together so much that people have even mistaken us for life partners (not that there’s anything wrong with that). My sister is even my Emergency Contact if I have an accident. If someone told me that in childhood, I would have told them that she was more likely to cause me an accident.
The change in our sisterhood was rather dramatic; it happened when she went off to college. I couldn’t wait for her to leave our cramped, shared 13 x 10 childhood bedroom. But as soon as she left, I actually missed her.
I missed having her in the room with me when I had a nightmare. I missed commiserating with her when our Mom was on a rampage about the status of our messy room (“You girls live like pigs.”). I missed her so much that I began writing her letters to update her on the important happenings at home – what we had for dinner, who our brother was dating, etc. She actually looked forward to my letters (blogger’s note: she may have started drinking around that time) and would often say, “I had no idea you were funny.”
We’ve been best friends ever since.
So when my two daughters (who didn’t even share a room) argued and fought in their younger years, I just assumed the same would happen to them when Katie, my oldest, went off to college. However, my younger daughter, Emily, quickly killed that idea when Katie came home that first weekend.
“What’s she doing here?”
“Ah, Em, this is still her home.”
“Katielocks” wasn’t too pleased with her little sister, either.
“Someone’s been sleeping in my bed. And wearing my clothes while I’m gone.”
Three years later, their relationship hasn’t improved all that much. I know that on some level they really do love each other, however, I have noticed instances of jealousy. Like that day I heard my younger daughter say, “Katie, you think you’re so special walking around with your Asperger’s.”
I shouldn’t be surprised because sibling rivalry is part of every family (Just ask Jan Brady). It’s just that in special needs families, kids are jealous in different ways. A dear friend reaffirmed this when she shared that her typical son was lamenting that she liked his brother with autism “better than him.” My friend, of course, set him straight.
“No! That’s not true! It’s just that your little brother doesn’t talk back.”
“Ahhh, Mom, that’s because he’s non-verbal,” replied her son.
My sister has witnessed strange sibling rivalry in her family, too. Upon learning about his mother co-writing a book (Shut Up About Your Perfect Kid), about his sister with a disability, her son, Michael, said, “What! Why can’t you write a book about me? I have all kinds of issues, Mom.”
My mother-in-law actually gave me a great tip for dealing with sibling rivalry. She often told my husband he was her “favorite child.” It wasn’t until his Mom passed away and he shared this fact with his siblings that he got an unexpected surprise.
“Hey, Mom told me I was her favorite.”
To this day, people still assure me my daughters will be best friends someday, but I’m just not seeing it. They are, after all, nothing alike. Even their differences are different.
One likes to talk constantly on the phone; the other doesn’t answer hers.
One likes to be alone; the other can’t be alone.
One has too many friends; the other struggled to make one.
They are both so good about accepting differences in others, but can’t seem to accept each other’s differences. They do, however, have some great things in common:
They both are beautiful people inside and out.
They both are loving and know the value of family.
They both have wonderful senses of humor.
They both won’t change a toilet paper roll.
I just hope someday they can get along and share the love and friendship I have with my sister. Our friendship is a tremendous gift; we need and appreciate each other more than ever, especially now that our mother is gone. I hope when I’m gone, my girls will realize that gift. And more importantly, I hope they won’t spill my parenting secret.
“Katie, did you know that Mom told me I was her favorite child?”
“Hey, she told me I was!”
Do you have special sibling rivalry in your home?
Springtime, Standardized Testing, and Kids with Special Needs. How can a parent help?
Guest blog by Dr. Susan Brefach
It’s spring, and that means more daylight, spring flowers…and standardized testing. For children with special needs, this often means endless hours of stress. Tasks that are too difficult are presented in a quiet room away from other students, with the help of a teacher or paraprofessional, broken down into smaller time blocks and smaller “chunks” of work—and it doesn’t matter. The children who struggle with reading, writing, attention, fine motor skills, comprehension or language are not well-served by these tests. As parents of children with special needs, you know how much you worry about your child’s learning and progress. You want to know how your child is doing. You worry about the testing that seems to take more time every year—time when your child could be learning. It wouldn’t be so bad if the test results were helpful, but in many cases parents tell me they don’t get anything useful from the results. That’s because the tests are designed for children who are learning (and hopefully mastering) the material at an average pace. This does not describe most of the children we know and love.
The Shut Up Sisters would like to give a special shoutout to the great folks at The Center for START Services at the Institute on Disability/UCED at the University of New Hampshire for giving us the sincere pleasure of being Keynote Speakers for their first annual “It Takes a Village” conference in Atlanta, Georgia on March 15. ” START is a national initiative that works to strengthen efficiencies and service outcomes for individuals with intellectual and developmental disabilities (IDD) and behavioral health needs in the community. We were thrilled to learn more about this incredible organization and to meet so many bright, caring, and dedicated providers and of course, entrench ourselves in Atlanta culture, which included:
- Being able to use the phrase ya’ll.
- Visiting a bar called Church. We loved returning home to our families and telling them that we “spent a great deal of time at Church.”
- Dining at the historic Varsity for delicious cheeseburgers, fries, and onion rings and taking home some hats “for the kids.”
- Making connections with bright and inspiring people from around the country.
- Learning there is no time change from Atlanta to Boston (who knew!)
- Riding in our first Uber.
- Coming home 7 lbs. lighter — if only it weren’t just in books.
Our presentation was a smashing success, as several people promised to invite others to join The Movement of Imperfection by visiting the Shut Up community on Facebook and bragging endlessly about their imperfect lives.
“I don’t think it’s bacterial meningitis. With that, people get progressively sicker and die,” said the handsome young doctor.
“Wwwwwhat did you say?” I stuttered, looking frantically at my tiny, soon-to-be 21-year-old daughter, Katie, groaning beside me in her hospital bed with an IV hooked up to her pale, and scarily thin arms.
We had arrived in the Emergency Room just an hour earlier. Katie, home for Spring Break (You know that time when carefree college students jet off to tropical locales like Punta Cana and Cancun?) had arrived home extremely sick with nausea, fever, headache, and severe neck pain. Concerned, I did what I have always done when my kids are ill – called the pediatrician.
“Is Katherine there with you? May I please talk to her?” the pediatrician asked.
“She’s really sick and doesn’t want to talk.”
“Mrs. Gallagher, your daughter is an adult and I need her permission to speak to you.”
Hmmm, this never happened before. Flustered, I helped Katie sit up and handed her my phone.
“Hello, doctor. Yes, this is Katie Gallagher. I’m really sick. You can talk to my mother, OK?” she weakly replied, handing me back my now germ-infested iPhone and burrowing herself under a blanket.
After relaying Katie’s symptoms and sharing my own diagnosis (I’m no doctor, but I play one on the Internet), the doctor instructed me to take Katie straight to the Emergency Room.
When we arrived, I was quite familiar with where to go, since this wasn’t my first ER Rodeo. Over the years, I had visited many times with my daughters and nieces who had their share of ear infections, flus, and fingers caught in toy video cameras. In fact, as I looked at the renovated waiting room, I couldn’t help but feel pride thinking, “Yup, we built that.”
I had instructed Katie to lie down in the waiting room while I registered her. There, I got another surprise. “Mrs. Gallagher, your daughter needs to come in; She’s an adult.”
“Oh right,” I said, silently checking the math in my head. (Well 2016 minus 1995, the year of her birth… I guess she is an adult.)
Katie slumped down in the chair and proceeded to answer all the questions she was asked in her Katie-like, no-nonsense manner.
“Yeah, yeah. That’s our address.”
“Yeah, we have United Healthcare. It stinks,” she said.
The clerk then asked for a signature. Just as I reached into my purse for my ballpoint pen, the clerk slid forms in front of Katie. Wait! What?
Five minutes later, when we were promoted to triage, Katie again took center stage answering the questions.
“Is there any chance you could be pregnant?” the nurse asked.
“Bwwhahahaha! Ahhhh no,” Katie laughed slapping her knee.
Hmmm, there’s a question we’ve never been asked.
When Katie was finally taken back to the Emergency Room (several minutes and 35 magazines later), I was further excluded when the doctor addressed Katie and not me. I wanted to stand up and say, “Ah Hello? Yoohoo. Over here, the lady with the gray hair and wrinkles. I’m her mother, the woman who makes all her decisions.”
What was even more troubling was that the doctor wasn’t using friendly, soothing terms. Instead of words like “boo-boo” and “tummy ache,” he talked about catheters, CT scans, dehydration, IVs, spinal taps, Lyme disease, and bacterial meningitis. I wanted to lunge over to Katie and block her ears, but then I remembered that this was her right; she was an adult and her own guardian and any medical decisions were hers to make. Not a good feeling for a control freak, special needs mother used to protecting, advocating, and hovering over her kid for her whole life.
When the doctor talked about the seriousness of her condition and the prospect of deadly meningitis, I half-expected Katie to break down, but instead she asked a very good question: “How will you know if I do have it?”
“Well, we’ll run some preliminary tests and depending on those, we might have to do a spinal tap or lumbar puncture.”
Katie pulled the hospital covers up to her neck and very politely said, “OK thank you very much, doctor.” Then, after a few seconds, when the gravity of the situation hit her, the little girl returned. “Mommy, that’s gonna hurt. I don’t like needles.”
Brushing back her hair from her warm forehead, I turned to her and said, “It’s OK Sweetie. You probably won’t have to have it. And if you do, I’ll be right here with you to hold your hand.”
And that’s all I could do two hours later when I watched the doctor pull out what appeared to be the Space Needle to put in my little girl’s small back. A worried Katie, peppered him with questions.
“Is it gonna hurt?”
“How long will it take?”
“Can you please tell me when it’s going in?”
“Will I be sore afterwards?”
Then she turned on her side, reached for my hand, and looked up at me with her sad, big blue eyes, just as she had done when she was a child bracing for a shot. I was ready to pull out my tissues and blot the tears and quiet the shrills that would invariably come. But instead, she closed her eyes, squeezed my hand, and quietly winced, “Aggghhh! Agggghh! Oh my God this kills!”
No crying. No screaming. No thrashing. (Well, not on her part. I was a different story, as my eyes flooded with tears, watching my sweet baby in pain).
That’s when it truly sunk in; my little girl really was an adult. And a pretty brave, bright, and meningitis-free one (phew!) who is capable of managing her life decisions, despite my best attempts to baby her.
“God Ma, this Spring Break sucks!”
“Katherine Lynn! I don’t like you swearing. Do I have to wash that potty mouth out with soap?”
They’re the young George Washingtons of the modern world; They are the special kids that cannot tell lies. To some parents, this might seem like a dream come true. But as many of us know (and have learned the hard way), this isn’t always a good thing. Here are 15 hilarious, real-life examples shared by special parents of when honesty isn’t always the best policy:
- “In a VERY quiet elevator at the Ronald McDonald House (lots of lowered immune systems coming and going…my son who was there for neuro/mental health stuff) loudly says, ‘Mom, remember that time you had an infectious disease?!'”
- “When I came home with my new bob haircut, my 7-year old son with Aspergers said, ‘Mom you look like Willy Wonka! You should get a top hat!'”
- “At about age 5, my child sees our neighbor in his own driveway about four feet away, smoking and then yells loudly, ‘Doesn’t Ed know that smoking will KILL HIM?'”
- “My 8-year old ( ASD ) when his nana was visiting, asked, “Nana what did you used to look like before you got old and creased?”
- “My 2-year old told a woman at the shops that she ‘would be pretty if she had a different face.'”
- “Several years ago I successfully lost weight through Weight Watchers. My son (severe ADHD & sensory processing), about 5 at the time, proceeded to tell EVERY overweight person we encountered about my success, and suggested they try it too.”
- “When asked by his teacher to let other students answer questions, my son responded in front of the entire class, ‘It isn’t my fault they aren’t smart enough to answer as fast as I do. What am supposed to do, wait?'”
- “My son to his therapist: ‘Why do you always have the same pants on? Don’t you ever do your laundry?'”
- “At our community pool last summer, my son approached the lifeguard station to let them know, ‘we probably shouldn’t be here, we have lice,’ after a week of treatment!!”
- “When my oldest was about 4, he went through his grammie’s house opening closet doors. When grammie asked what he was doing he replied, ‘looking for the skeletons, mommie said they were in your closets.'”
- “On my last birthday, my 15-year old son (Asperger’s, GAD, OCD) cheerfully informed me that if I lived in the Middle Ages, I’d already be dead.”
- “I was talking to a friend about my sons’ teacher and mentioned I thought he had a cute butt. My kids were playing and giggling away to each other so I thought nothing of it. The next day, my son went to school and told his teacher, ‘My mom has a HUGE crush on you and I mean HUGE. She said she likes your bum and bums are gross so if she likes yours, she must reaaaaalllllly like you.'”
- “I was grocery shopping with my son who at the time was two. A larger woman in shorts 3 sizes to small walked by our cart. As she passed by, he shouted, ‘Hey lady, I think your shorts are broken. I can see your butt’ as loud he could.”
Do you have an example you’d like to share about your child? We’d love to hear it. Honestly.
Who said New York Yankees and Boston Red Sox fans couldn’t get along? Last night, the Shut Up Sisters and their new friends at OHEL Home & Family Services in Brooklyn, NY, proved that imperfection unites all. The evening was an incredible success, providing attendees with an important message of hope and Patty and Gina with a strong excuse to get out of the house. (By the way, Gina’s husband thinks the conference is still going on, so please don’t tell him it’s over.) Thank you to OHEL for welcoming us in to your beautiful family and to all the attendees who shared their personal stories and hearts with us. We truly do love NY!
Special thanks to Derek Saker for sharing his thoughts on the presentation:
“Just a short note to thank you for your incredible evening last night at our event in Brooklyn. It was really something powerfully refreshing, original, and impactful – and we already received many favorable comments from attendees.Disability and stigma transcend every community, every faith and every economic bracket.In a world that is sometimes so polarized and compartmentalized – your universal messages speaks to all. Wishing you only continued success. – Derek Saker, Director of Marketing & Communications, OHEL Children Home & Family Services.
One of these things is not like the others,
One of these things just doesn’t belong,
Can you tell which thing is not like the others
By the time I finish my song?
— Lyrics from Sesame Street – One Of These Things (is Not Like The Others)
When we were kids, we loved watching the children’s show, Sesame Street. One of our favorite segments was “One of These Things Is Not Like the Others,” where you had to identify an object that was different from the others in a series. At the risk of sounding like braggarts, we were quite good at identifying things that didn’t belong. It’s a skill we still possess to this day. We can spot an imperfect parent pretty much anywhere we go — in schools, restaurants, liquor stores, doctors’ offices, even at pharmacies. Quite a skill, we know!
Truth be told, it’s not that hard, since imperfect parents sometimes tend to stand out from their “perfect” counterparts. Here are 9 surefire ways to spot an imperfect parent:
- On Parent/Teacher nights, they can be spotted wearing all black.
- They go missing on report card days.
- They sit near the exits at school plays and other performances.
- They are on a first-name basis with the entire Pharmacy staff and often can be spotted explaining dosage instructions and warnings TO the pharmacists.
- They place peculiar special orders in the fast food lines, “Yes, I’ll have a hamburger without the hamburger. And please Supersize the ketchup.”
- They ask about rewards cards at liquor stores.
- They can often be spotted peeling out of the school drop off line.
- They are eager to discuss “Taco Tuesdays” during curriculum nights.
- They cut tags off children’s clothing — in the dressing rooms.
Are you good at spotting an imperfect parent? Tell us how do you spot ’em.
Patty and Gina and their imposters invite you to join us for Buddy Cruise 2016. Buddy Cruise is a non profit that hosts an annual conference at sea for families and friends of ALL special needs families. There is something for all ages and abilities. JOIN US October 22-29, 2016. To learn more, email firstname.lastname@example.org. Or visit www.buddycruise.org.
Upon seeing this funny meme from our friends at ChewigemUSA (where all the cool “kids” with sensory issues shop), we put our imperfect brains together and came up with some other things no imperfect parent would say.
“Come to the dentist, Honey. It will be fun.”
“Your clipping your nails again?”
“Sweetie, I think ski pants in July is a great fashion choice.”
“Honey, did you know your socks are inside out?”
“That’s so nice of the Principal to call me every day.”
“I sure wish your teachers gave you more homework.”
About “perfect” parents:
“I love reading your child’s college acceptance letters on Facebook.”
“Sure, I would love to come over for coffee and compare our children’s milestones.”
About being social:
“Another birthday party invite? This is getting expensive.”
“Your friends are coming over again?”
About special education:
“There’s some really interesting stuff in that Parent Right’s brochure.”
“This IEP draft is good, but I wish it were a bit longer.”
“Oh goodie! Report cards are coming today!”
“Not my kid.”
“We don’t need a lawyer.”
“A little change never hurt anyone.”
“I can’t stand those support groups where the women sit around, complain, and drink wine.”
What would you NEVER say?
All of us here at Shut Up Industries (aka Patty & Gina) would like to wish you and yours a very happy, healthy and romance-filled Valentine’s Day. In celebration of this exciting day, Gina and her husband spent some quality time together at The Home Depot where we picked out our very first roof rake. It’s nice to know that after 24.5 years the magic is still alive.
Do you consider a “banner day” one in which you receive no calls from the school?
On those rare occasions when the school doesn’t call, do you automatically assume you forgot to pay your phone bill or that your phone is in need of service?
If so, you are likely suffering from a serious mental health condition that affects millions of parents and caregivers of special needs children each year — Post Traumatic School Call Distress Disorder or PTSCDD as it is known on the imperfect street. This silent killer can strike any parent at any time; all it takes is a few bad news calls in succession to experience its debilitating effects.
Know the PTSCDD Warning Signs
PTSCDD can be brought on by a variety of causes, including:
- Disciplinary calls from the school principal.
- Teachers seeking field trip permission slips.
- School nurses hunting down required health forms.
- School nurses calling to tell you your child needs to be picked up early.
- Lunch ladies seeking payment (Hell hath no fury like a lunch lady scorned).
- Librarians seeking overdue books.
- Teenagers calling home asking for things.
- Automated calls telling you school is delayed — or worse — cancelled.
- IEP Team leaders attempting to schedule an IEP meeting.
Ways to Avoid PTSCDD
While there is no known cure for PTSCDD, “imperfect experts” recommend taking some preventative measures to lessen its effects, including:
- Activating caller ID, the sophisticated school call advance warning system.
- Destroying your phone. (Note: An alternative excuse to “The dog ate it” is recommended.)
- Changing your phone number and not telling the school — or your teenager.
- Requesting that the school notify you via singing telegram. Nothing softens bad news better than a song.
- Signing up for a Sprint phone, which will ensure you have no signal.
- Hiring a bad news call answering service — a real time-saver for parents who have children with behavioral issues.
- Creating personalized voicemail boxes. “If you’re calling for Gina, press 1. For Mike, press 2. From the school, please hang up and dial someone else.
Do you suffer from PTSCDD?
If you’re among the millions of special needs parents suffering from PTSCDD and would like to share your school call survival tips, post a comment.
We are strong. Fierce. Able to leap down the throats of insensitive people in a single bound. We are special needs parents and caregivers. When it comes to caring for our special children, we are good.
There is, however, something many of us are not so good at — caring for ourselves. We s*ck at that!
With all the tasks involved with raising special children — advocating for services, handling the volume of bad news school calls, searching for seamless socks, praying for birthday party invites — many of us have little energy left to take care of ourselves. And that’s a shame because self-care is one of the most important ways of dealing with the stress of special needs parenting.
Think about it. If we’re not healthy, how can we possibly raise healthy children?
A speaker for the National Alliance on Mental Illness (NAMI) once shared an interesting analogy about self-care. She said, “When they give you safety instructions on an airplane, what do they always tell you do when the oxygen mask drops down? They tell you to put your mask on first and then put your child’s on.”
It sounds simple enough, yet so many of us fail to take time out of our schedules to put own our own masks. Heck, most of us rarely take the time to put on our make-up or pants.
Hello Independence. Goodbye Martyrdom.
Years ago, when my children were struggling and our household was at a high stress level (registering a 100 on the stress-o-meter), I did NOTHING for myself. Well except go to the bathroom… I occasionally did that. It wasn’t until a wise friend and therapist told me, “Gina, you’re so stressed out. As the mother, you dictate the temperature of the house. If you’re stressed, your children will be stressed.”
It made so much sense. I thought by focusing just on my children’s care, I was being a good mother. Instead, the lack of care I gave to myself was actually hurting them. I was tired, short tempered, stressed, and depressed — my own Imperfect Mommy Dearest (though I had no problem with wire hangers).
That’s when I decided to put a little energy into my own care and introduce a livelier, healthier, more exciting me — “Independent Gina” — to replace tired, old stressed-out “Martyr Gina.” I joined a women’s basketball league and started playing twice a week. I made a great group of friends and ran out my stress. And on occasion, I even scored a basket. #winning
As a self-care convert, Independent Gina, would like to share her tips for practicing self-care:
Get the heck out of the house. Since special needs households tend to be stressful (You could cut the stress with a chain saw), try and get away when you can. Meeting a friend for coffee or joining a book club count for getting out of the house.
Note: Going to the mailbox does not count.
Exercise. Nothing is better at relieving stress than exercise. Take up walking, running, or yoga. Or join a gym. I have to say I love my gym, Planet Fitness, which has the equipment I like and Pizza Monday and Bagel Tuesdays. #winwinwin
Note: Doing your child’s math exercises does not count.
Laugh. Laughter offers some significant health benefits — it reduces stress and triggers endorphins. Make some time to go see a funny movie or watch a comedy show.
Note: Going to the dentist and getting laughing gas for cavity removal does not count, unless you bring the laughing gas home. If you do, please call me to come visit.
Treat yourself. When is the last time you treated yourself? Get your hair or nails done. Or get some new clothes. Just buy something fresh and new.
Note: Buying deodorant does not count.
Honestly, it really doesn’t matter what you do to take care of yourself (Provided it won’t get you arrested); the important thing is that you do something for yourself and put your inner martyr to rest. RIP Martyr Gina. (She was really no fun anyway.)
Tell us one thing you do for yourself each day. Note: brushing your teeth doesn’t count.
“If something isn’t working, do the opposite of what you’d normally do.”
A dear friend and therapist (score!) once gave me that advice after I lamented about my parental ineffectiveness. I, of course, in imperfect form, did what I normally do — forgot the advice. That is, until recently, when I was watching an episode of Seinfeld and witnessed this oppositional strategy effectively employed by a very unlikely character — the infamous George Constanza. For those unfamiliar with George, he is the neurotic, single, short, stalky, slow-witted bald man on the show, the self-proclaimed “Lord of the Idiots,” who flounders at life. George’s life is so unimpressive that he often fabricates stories and professions — from being an architect to marine biologist — in order to impress women.
One day, after complaining to his good friend, Jerry Seinfeld, about his failings in life (George has no job, no money, and lives with his parents), Jerry suggests, “If every instinct you have is wrong, then the opposite would have to be right.”
George decides to test Jerry’s theory by boldly walking up to an attractive woman and saying, “My name is George, I’m unemployed and live with my parents.” The woman turns to him, bats her eyelashes, and replies in a flirty voice, “I’m Victoria. Hi.”
George’s model of success got me thinking, What if I could take that same approach to something that I have always felt like a complete and utter failure at — the IEP Team Meeting?
Here’s what I would do:
1.Instead of signing my name to the sign-in sheet, I will be a real rebel and print my name…in ALL CAPS. That will show them who’s in charge (or that I have serious anger issues).
2. Instead of worrying about where I’m going to sit at the meeting (a strategic decision so that I don’t feel like I’m outnumbered or testifying in front of Congress), I will stand. This will catch them off guard, while ensuring I don’t fall asleep (something that’s always a risk when they start going through their dry reports).
3. When the team members ask me if I understand their reports or have any questions, I will no longer nod my head and tell them to continue. Instead, I will ask some direct and well-thought-out questions of my own:
“Doesn’t anyone here speak my language?”
“Isn’t it my right to have an English-to-English translator here?”
4. I will no longer cry when I hear about my child’s struggles. Instead, I will laugh. While laughing may not help with my water retention (I cried out 7 pounds at my last IEP Team Meeting), it may work my abdominal muscles, which is always a good thing.
5. I will not dress up in a suit to show that I am professional or buttoned up. Instead, I will wear the special-parent wardrobe staples of the no-button elastic pants and sweatshirt. I will also wear a bra, which is the opposite of what I do when at home.
6. I will no longer bring food to try and suck up to the teachers. Instead, I will bring drink, most likely wine. Mindful of the fact that not everyone drinks, I will also bring Prozac.
7. When the team starts to put together goals for the IEP, instead of just listening to them, I will ask them to add a strategic goal of my own:
“Can you add that ‘Emily’s mother will understand what you all are talking about in 1 out of 10 opportunities.'”
So that’s my strategy for my upcoming meeting. If all goes well, I should leave the meeting with a different outcome — feeling energized, smart, and in charge. That is, until they put me in cuffs for bringing illegal substances to school.
Many parents (myself included) work hard for many years trying to help their children be organized, more efficient, on time, to put things in their right places, manage their assignments and keep their binders or rooms neat. These things are called “habits of mind” and they are incredibly important for success as our children get older. Unfortunately, it often seems like an impossible task- especially once we try to pass the responsibility on to our children to “do it themselves”. I don’t know about you, but there were times when I thought it would be easier to push water uphill!
So, to save our sanity and give our children a useful tool, I recommend the One Page Miracle used by Dr Daniel Amen, a psychiatrist and author of Change Your Brain, Change Your Life, with his patients who have ADD/ADHD. It works like this:
- On a sheet of paper, write “One Page Miracle” at the top, and “what do I want for my life?” underneath.
- Down the left side, put 4 categories: Relationships; Work (or School); Money (or Goals for the Future); and Self.
- Give the paper to the person struggling with attention and organization. They must fill in the goals themselves! I think kids older than 10 can do it, with perhaps a little help from you.
- Next to Relationships, they write down their goals for what kind of person they want to be, with the other important people in their lives. What do they want in terms of friendships, or getting along with parents and siblings?
- Next to Work or School, they write their work or school goals, such as keeping their binder organized, putting completed work in the right folder in that binder; keeping the agenda book up to date; checking in with teachers when they have a question; putting dirty clothes in the hamper; straightening their room every week; making a checklist for getting ready in the morning—whatever they need to be doing to feel “on top” of expectations
- For Money, they list where they want to get to, in terms of career, college, independence, or even grades. Older teens may have some idea of their money goals, but for younger kids there are different priorities
- What are their goals for Self? Exercise, sleep, eating healthy foods, learning tricks to stay focused when working, reviewing the day to see what got accomplished, reading more books? This, too, is a personal and individual entry
Once the paper is done, tape it to the mirror in the bathroom or bedroom, where your child will look at it every day. Tell them to read it over each morning, as a way to get focused for the day. They can also review it at night. How did they do? What should they keep in mind for the next day? Where could they improve?
It’s simple, and it may seem like it couldn’t possibly work, but I’ve seen it change the way people behave because for the first time their goals and desires are right there in front of them, in bold print, to be read every day and thought about. “Fortune favors the prepared mind” (Pasteur). The One Page Miracle helps the person with ADD/ADHD to get a prepared mind.
As always, I welcome your thoughts, questions, comments. Please share this post with other parents or professionals who might be interested.
For more helpful information from Dr. Susan Brefach, including information on how to order her book, “No Parent Left Behind,” visit her website at SusanBrefach.com.
Tired of getting headaches trying to decipher your child’s testing results?
Of listening to education experts throw out confusing terms that you don’t understand?
Of thinking you need an IEP to understand your child’s IEP?
If you answered “Yes” to any of these questions, you need to see the doctor — the Special Ed Doctor. Patty and Gina, the “Shut Up Sisters”, are pleased to have partnered with the very bright, Dr. Susan Brefach, neuropsychologist and author of the book, “No Parent Left Behind” to offer a new website and Facebook page feature, “The Special Ed Doctor Is In.” Dr. Susan has agreed to share her insights and answer questions to help special parents and caregivers navigate the journey to educational success for their children. She will offer instructional video answers to your questions and share her informative blogs. You can learn more about Dr. Susan on her website at susanbrefach.com or on her Facebook page at No Parent Left Behind.
“What goes around comes around!”
Who among us hasn’t heard that maternal phrase, straight out of the Manual of Mothering? It’s usually preceded by the always-popular, “You just wait until you have kids. The way you treat me; your kids will treat you.” (Source: Manual of Mothering, Chapter 1: The Joy of Guilting)
Growing up, I usually ignored these and other silly motherisms, which my mother dished out more than the recommended daily allowance of green vegetables.
“If you keep crossing your eyes, they’ll get stuck that way.”
“Don’t jump off the bed. You’ll fall and crack your head open.”
However, there was one childhood moment that forever burned my mother’s warning of “what goes around, comes around” in my mind.
I was 16 years old at the time, and had just had a terrible argument with my mother. Frustrated by her lack of understanding, I shouted those three forbidden words I had never-before said to her — “I HATE YOU!”
To this day, I will never forget my mother’s reaction. First shock…then hurt… then anger… then those all-too-familiar words:
“You just wait until you have kids. The way you treat me, your kids will treat you. What goes around comes around.”
At the time, I didn’t realize it, but “Momstradamus’” prophecy would eventually come true. However, it would come much later in my parental life, and emanate from a surprising source — my 20-year-old, daughter Katie. Yes, her, the gentle and easy-going kid with a long, proud history of doing exactly what I have always commanded.
“Honey, stay in your big girl bed in the morning until Mommy comes and gets you.”
It started off with a disagreement about Katie not doing her share to help out around the house, and quickly escalated when I came home to a mess she had left.
“I am so tired of cleaning up after you. I do everything for you and ask you do one small thing and you can’t do it. You are a disappointment to me.”
As soon as I said the harsh words, I regretted them.
Katie’s reaction was instantaneous. She rolled her eyes, placed her small hands on her tiny hips, and fired back.
“I AM SO SICK OF THIS. I HATE BEING HOME! AND I HATE YOU!”
At first, I wasn’t sure I heard her right. She couldn’t have said to me – the woman who has sacrificed so much for her? The woman who at that very moment, was wearing her #1 Mom necklace that Katie’s younger sister had given her.
Katie was equally stunned by her words. And remorseful.
“Look, I’m sorry I said that, Mom. I didn’t mean it. When you said I was a disappointment, I was so hurt. I have been working so hard to make money so I don’t have to keep asking you and Dad. I should help out more, but I feel like I never have time for myself between school and working full-time. I feel so bad for saying that, especially since you don’t have your mother. But Mom, when you said I was a disappointment, I lost it. You’re the one who was always telling me “words can hurt”, Mom. You shouldn’t have said that.”
Woah! Where did that come from? This was the kid who always had trouble speaking up and advocating for herself; the kid who was supposed to have lacked empathy.
Then it dawned on me; she isn’t even a kid.
She’s 20.5 years old. An adult. With all kinds of adult stress. Work stress, school stress, money stress, not to mention the stress of managing all that with a disability.
Even though I was now the recipient of those hateful words, I felt the same shame. She was right; I should have chosen my words carefully.
But naturally, I couldn’t just excuse her harsh words or the fact that she wasn’t helping out at home. Instead I selected a page out of the Manual of Mothering, The Joy of Guilting and said, “I’m sorry for being so harsh, but you never should have said ‘I hate you’ to me. What goes around comes around. And don’t roll your eyes at me either, they’ll get stuck that way.”
How the heck did that happen?
One moment, I’m on top of the parental world. I’m the hoop-playing, book-writing, bubble-gum-packing Cool Mom in the Hood (“the CMH”); the Mom who brought droves of neighborhood kids to the door, earning coveted playdates and the admiration of my then-socially challenged daughter, Katie.
“Mom, the kids want me to come over and play Ding, Dong, Ditch. They said you can come, too.”
“Cool, I’ll be right there.”
There’s no doubt; back then, I had my maternal mojo, a social marvel to my innocent, impressionable, and quirky Katie.
“Wow Mom, you really know what to say to kids. I wish I was like you.”
Really. I could have worn a blue suit and red cape with the letters “SSM” –SuperSocial Mom.
I was that good.
But now that my little girl is 20 and living away at school, I’m no longer someone she marvels at. Now, I’m just a mere mortal mother who has been stripped of her social superpowers. Without notice, the “SSM” I so proudly wore has been torn away from my now-sagging chest.
I am now NM – Nosy Mother; the very person I fought against in my own childhood.
“Mom stop reading my Etch-A-Sketch. God! You are so nosy.”
I didn’t realize my metamorphosis until Katie came home for college this winter break. Somehow, some way, the easy-going daughter, who used to be so open in childhood, has gone off the maternal grid, giving me very little information about her life at school, work, or anywhere else, and forcing me to conduct my own investigation.
“Who are you talking to, Honey? So do you like any boys at school? Have you made any friends at work? Is everyone being nice to you? Are your grades OK? How’s your driving been? You aren’t smoking pot, are you?”
I hate to admit it; my formerly open-book daughter now runs her life at home like a KGB agent. And, I, the once epicenter of her existence, the Former Center of Her Universe (FCHU), have been shut down. Cut off. Iced out.
“God, Mom! You ask way too many questions. You are so nosy!”
Of course, like any good secret agent (or obsessed special needs mother), I haven’t been deterred in my mission to know what’s going on in her life. I even have access to some sophisticated technology for obtaining information and assessing any threats to her.
“Mom! Please stop reading my Facebook page! You’re so sketchy! I’m unfriending you!”
I will admit, however, that while I am a bit hurt that I am no longer part of her CST – Circle of Social Trust – my daughter’s need for privacy does bring me pleasure. She’s doing something that I thought she’d never be able to do when she was diagnosed with special needs and really struggling.
She’s living independently. Without me.
But that doesn’t mean I’ll ever stop my quest to know more about her life. I can’t. I am “SNM” – Special Needs Mother. It will always be my job to look out for her, no matter what she says.
Really Mom? Someone named ‘Tina Tallagher’ just Friend Requested me. You are so lame.”
Gina Gallagher is a former Superhero, freelance writer, and co-author of “Shut Up About Your Perfect Kid; A survival guide for ordinary parents of special children.”
Reaching out, making connections
Looking for friends and new directions
Exploring new places and meeting people
Moving forward and looking for life’s next sequel
Beautiful beach weather with waves crashing on the shore
Allows me to connect with nature
My senses feel alive to the core
And I relate to life’s basic force
Crowded beaches with people everywhere
Dogs of all shapes and sizes
Makes me feel like part of the affair
And I am happy and my spirit rises
Celebrating the vacation with family and friends
Seeing new and old acquaintances
Helps me reconnect and feel alive
And enables my mind to thrive
Summer is a great time of year
A bright new beginning in life is here
My plan is to make the most of this season
And let the meaning of my life deepen
It’s extremely easy to lose sight of yourself when you are the caregiver to any special needs individual. You begin to define yourself by that, forgetting all the things that made you the person you were before…I used to be Jackie, and hey…to the best of my blurred recollection, I used to like stuff!! I used to enjoy employment, going out with friends, reading smutty novels, traveling, crafting, sleeping, laughing…I have vague memories of such events.
I am currently the primary caregiver to all 3 of our children during the day; 2 auties and 1 typical. According to my therapist (yes, I felt the need to consult one of those years ago in my quest for sanity…a battle I have since waved the white flag on), each autistic child counts as 10 typical kids on the work equivalence scale. So by that standard, I watch 21 kids all day, every day – which feels much more accurate when measuring my exhaustion. I also feel it’s important to mention my lifelong doubts about my ability to be “maternal”, as I always questioned if I was even cut out for motherhood. Eventually I decided if animals, insects and idiots can do it, I can too! And heck, I don’t even have to master something as difficult as parallel parking, ’cause you don’t need a license to breed! Naturally, I never considered the possibility that my children would be anything less than normal (if not brilliant, like me, right?). Parenting, of course, is a life long commitment, I knew that going into the “breeding zone”. However, my commitment will be obviously different from most parents… I will never experience the glory and the suffering of empty nest syndrome (you know, that magical moment when you get your life back…). Two of my children will require life long care, which is a pretty overwhelming thought, one most parents fortunately don’t ever have to consider. I admit, I often get annoyed when parents take their own beautiful normalcy for granted, and yet blissfully unaware is what I too long to be.
And, no, I am not always the shining ray of sunshine that I present to you here. Like every parent, I have my days…and nights (and my days that turn into nights, that continue on into the next day). Sometimes in my darker moments, my mind runs through the plethora of things that my sons will never experience…Like developing real friendships; getting the “joke”; driving a car; making love to someone they love; or experiencing the wonderment of their own child. Unlike most parents, my thoughts are consumed with things like, who will really care for you when I am gone? Did others hurt or mistreat you while you were away from me (because you can’t TELL me if they did)? If I work diligently with you, day and night, might you someday have a breakthrough?? Does it hurt, autism? And what the hell is that under your fingernails?? I know I am not alone, I truly believe every parent of an autistic child wishes, even just for a minute, that they could be their child, be in his head, his body… to experience with new understanding this puzzle we try to solve each and every moment of each and every day.
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 accomplishments I achieve 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.
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.
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!
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 email@example.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.
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.
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?
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
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.”
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.
Tired of listening to bad news in Team Meetings? Well now you can let the IEP Team know how your feeling without even speaking — with this colorful sign. (Available at Target in the Halloween section.)
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.”
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…
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.
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!”
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?
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.
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?
…He asks you to accompany him to the city dump and you’re actually flattered.
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.
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.
― Elisabeth Kübler-Ross
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