When the “Shut Up Sisters” penned their book, “Shut Up About Your Perfect Kid,” their daughters were just young lasses. Gina’s daughter Katie struggled academically and socially. Today, Katie is a successful 23-year-old adult who has decided to share her story by speaking to various groups. Recently, she spoke at a Massachusetts elementary school, where she explained her differences and struggles and invited children to try to understand and accept each other. Here is a brief clip of her speech, which did not result in any heckling, paper air plane throwing, or spit ball blowing. Way to go Katie.
Breaking news in the World of Imperfection! Shut Up Daughter, Katie, one of the inspirations for our book, Shut Up About Your Perfect Kid, recently completed all the requirements needed to earn her Bachelor’s degree from Westfield State University.
Diagnosed with Aspergers syndrome at age 7 , Katie was told by “experts” that she would never graduate high school, live on her own, or ever even attend college. Well once again, Katie proved those “experts” wrong and accomplished all of those things. What started as a dream for Katie finally became her reality. “I am wicked happy! It took a lot of time and hard work, but I knew I could do it,” said Katie. Katie’s mother, Gina, (the tall goofy Shut Up sister) was elated, ” I am so proud of her! She has overcome so much in her young life. She has a very bright future. And speaking of her future, she is available for employment. In fact, I have set up a hotline, 1-800- EMPLOY-KATIE to help find her a job. Just kidding, it’s a website.”
Recently Today.com and babble.com wrote articles highlighting Katie’s accomplishment. You can read the articles below:
The holiday season is here! And imperfect parents from around the globe are reviewing their children’s holiday gift lists and checking them twice…three times…and again…to ensure they are reading them correctly. Because as many parents know, special needs children are quite clever and creative when it comes to their holiday wish lists. And in keeping with our imperfect holiday tradition, we are including some of our favorite items on the 2017 Imperfect Holiday Gift List as shared by members of our imperfect Facebook community.
A cruise ship
A semi-tractor trailer truck for him to drive (he’s 7)
A ” VW bug. Life-size.”
A grandfather clock
A robot butler
A Chuckie doll
A gallon of glue
From the animal world:
A real baby bull
A real jellyfish
An alarm clock in military time
A telegraph machine
A Vladimir Putin bobblehead
A dunk tank
Sparkling cranberry juice
20 oz. of milk
A case of Red Bull
Campbell’s chicken noodle soup
Do you have a fun and imperfect item you’d like to add to the list?
It’s that time again. Anxi-o-meters across the country are reaching record highs as parents prepare for the new school year. And while special needs parenting experts have all kinds of advice to ensure a shining start, special parents living in the trenches have some pretty solid advice of their own. Here are 7 smart tips gathered from Patty and Gina on the “imperfect street.”
- Stretch before dancing at the bus stop. After a long summer, you may be a little excited about getting a break from your kids. In fact, years ago, we posted a blog about Massachusetts Mom, Tracy Moutafis, who earned national attention for dancing at the bus stop at the start of each school year. If you feel the need to channel your inner Tracy and cheer, breakdance, or cartwheel, be sure to avoid Gina’s mistake and stretch before to avoid injury.
- Stay current on your Internet bill. You may not be an Algebra expert, but you can certainly play one on Google to get those homework answers. Also, don’t be afraid to put your social networks to good use. Ask that engineer friend to do you a square and help with geometry or that ski pro friend to help calculate slope.
- Choose your Emergency Contact wisely. Try to select a responsible, patient person whom the school can call in your absence — a person who will not fold under difficult circumstances or attempt to enter the Witness Protection program.
- Organize your voicemail. This will make managing your messages and sorting through those school calls much easier. For example:
- “‘Press 1, if you’re the Pharmacy.”
- “Press 2 if you’re my child’s attorney.”
- “Press 3, if you’re the school calling with bad news.'”
- Clear out filing space. An organized special parent is a successful one, so make sure you organize and file important legal paperwork, such as IEPs, evaluations, progress reports, rights’ brochures, as well as documentation for any new lawsuits that may arise as a result of your child’s behavior. Consider converting a spare bedroom, renting a storage bay, or emptying out that pool that no one seems to use anymore.
- Approve your child’s clothes the night before. This is especially important if you have children with sensory issues, or even worse, teenage daughters. Nothing warrants a school call like a tube top or a translucent pair of leggings worn over “Lucky You” conversation underwear. (Not that this happened to Gina or anything.)
- Stay current on your lunch bills. If your child is going to purchase lunch, be sure to send in the money in advance. It will help you avoid added stress and those awkward questions from your child, such as “Mommy, why is the lunch lady parked outside our house?” Plus, unpaid lunch bills have a way of cropping up later in life. “Sorry, Mr. and Mrs. Jones, we have to deny your mortgage request. It seems you have unexplained past due Taco Tuesday debt.”
Do you have an imperfect tip you’d like to add? Go ahead… share with the imperfect group.
When you’re a parent, you often find yourself using the same parental cliches as your parents. If you’re an imperfect parent, however, you might find yourself saying things you thought NO parent would ever say. Shut Up Sister Gina recently found herself in this situation when she admonished her daughter Emily, a cosmetology school student, to “Get your heads off the table!” (as shown in the photo above).
In the spirt of parental imperfection, here are “10 Other Phrases Imperfect Parents Thought They Would Never Say,” as shared on the 900,000+ worldwide Shut Up Facebook community.
- “If you can’t respect your teachers, just sleep through their class.”
- “Let your sister out of the fold out couch.”
- “Stop shaking your head, you are not a bobble head doll.”
- “Get your bras out of the plants; we have hampers.”
- “Why can’t you be out causing trouble like other teenagers your age?”
- “Great impersonation son… Now please take my bra off and put it back where you found it.”
- “It’s not polite to answer the door in only your underpants.”
- “We go pee in the potty NOT in cups or on the bookcase.”
- “Please don’t bite the dog.”
- “We don’t pee off the balcony – inside or out.”
Did you say something you thought you’d never say? Let’s hear it.
My name is Gina.
And I’m a survivor.
Not a scary illness survivor.
Not a contestant on the show “Survivor,” as I could never dine on bugs or parade around in my bathing suit (I’d rather not survive than do that).
I’m a driving instructor survivor. Or to be more specific, a survivor of teaching my 18-year-old anxiety-ridden daughter how to drive.
I’ll admit this wasn’t my first new-driver rodeo. In my illustrious imperfect parental career, I helped my older daughter, with visual spatial issues and ADHD, get her license (rumor has it I just missed being named “Time” magazine’s “Woman of the Year” for this feat).
But this… this was pushing myself to new and unknown limits — teaching a child who has always feared all things unpredictable in life.
“Mom look at this weather map! We’re getting a tornado! We’re all gonna die!!!”
“Emmy, Honey, that tornado is in Topeka, Kansas. We live in Massachusetts.”
What’s more I had to teach her how to drive in one of the most unpredictable driving regions in the country (they don’t call Massachusetts’ drivers “Massholes” for nothing).
Driven to succeed.
Her anxiety was one of the reasons she was in no rush to get her license. It wasn’t until she turned 18 and started applying to cosmetology schools that she realized it was time.
“Mom, I think I’m ready to get my license.”
So, I signed her up for driving school, dug out my rosary beads, and eventually took her out in the car to begin her lessons.
Her initial struggles with unpredictability were real.
“Why is the sun shining in the car; I can’t see!”
“Why does UPS have to deliver that package now?”
With time, practice, and several thousand novenas (thank you St. Christopher), she learned to navigate uncertainties and build her confidence as a driver. I even learned to deal with my own anxieties in a constructive way.
“Mom, please put the holy water away! I think you got it in my eye.”
Before I knew it, she became a good driver, and I found myself worrying less during our driving sessions.
A test of courage.
When the day came for her to take her driving test, I knew she was ready, though she had major doubts and anxiety.
“What if the Registry guy is mean?”
“What if I can’t find the defroster?”
“What if a sinkhole opens up on the street and swallows the car?” (a bit of an exaggeration, but you get the point).
I grabbed her face in my hands, looked her straight in the eye, and said three words that surprisingly weren’t “God. Help. Us”; I said “You. Got. This.” And deep in my heart, I knew she did.
I wasn’t wrong. She passed her test with flying colors. I couldn’t have been more proud.
7 Imperfect parent driving survival tips
I learned 7 valuable lessons teaching my daughter to drive, which I have shared below:
- Start in the driveway. Parked. This excellent piece of advice came from education consultant, Cynthia DeAngelis, who instructed us to practice starting the car in the driveway. While in park, we also practiced switching from brake to gas pedal, increasing speed, and signaling. By the time we were actually ready to drive, my daughter had her footwork down and we had logged 40 hours of practice (just kidding).
- Find an empty parking lot. On my daughter’s first real run, I took her to an empty industrial park. The company that once operated there made a wise decision to move as we surely would have killed all their employees.
- Keep the passenger side window up. Otherwise, you’ll end up with tree branch scratches on your face as your new driver struggles to keep the car from veering to the right.
- Pray. God and I talked a lot during our lessons. If you’re not a person of faith, bring along rabbit’s feet or trolls (they seem to be popular on the Bingo circuit).
- Pay for extra driving lessons. If your child needs extra practice, let the professionals handle it (after all they have their own brakes). It may cost you more, but will save your sanity.
- Visit graveyards. They provide an excellent venue for your child to practice turning and driving on narrow roads. More importantly, it’s impossible for your child to kill people who have already died. #winning
- Build confidence. Praise your child for the things they do correctly (“Great job, Honey. You didn’t hit any mailboxes today”) and give them constructive suggestions on ways to improve. (“Great job remembering your turn signal, but next time, try signaling BEFORE you make the turn.”)
By following these simple lessons, you just might end up like me — with a proud and licensed driver and a closer relationship with God (we talk every time she goes out to drive).
“Kids today have it so easy!”
I can’t remember how many times I heard that one from my parents as a kid. But anyone who is raising a child today knows that ain’t true.
Kids today have a TON to worry about.
It’s a lesson that my 21-year-old daughter, Katie, and I learned just yesterday when we traveled to North Andover, Massachusetts to speak to 5th-grade students at Franklin Elementary School. The talk was part of the school’s adoption of the “Understanding Our Differences” program aimed at providing education on autism, learning disabilities, deafness, and intellectual and physical disabilities.
As Katie shared her academic and social challenges in elementary school and the worries she had growing up, the children were eager to share their worries. They had plenty:
I worry about my future and whether I will go to college.
I worry about making friends.
I worry about not finishing my work.
I worry about making mistakes.
I worry about not having the right answers.
I worry if kids will like me.
I worry about what I’m wearing.
I worry about my parents.
I worry something will happen to my kitten.
I worry I will miss a penalty kick in soccer.
I worry about Donald Trump.
What surprised me, a 50-year-old adult, was that I could relate to so many of them. One worry in particular sent shivers up my spine…
“I worry the New England Patriots are gonna lose on Sunday.”
And when Katie told the kids about the differences she had in elementary school — difficulty making friends, hand flapping, and academic challenges — the children bravely shared their own. Once again, the responses were surprisingly mature and very similar to differences many adults (myself included) frequently express:
I don’t hear very well.
I’m not good in math.
I’m terrible at sports.
I’m too tall.
I’m too short.
We closed the discussion by asking the kids what they could do to help a struggling or lonely classmate with challenges similar to Katie’s:
I will smile at them if they feel sad or lonely.
I will help them with their math.
I will invite them to play with me at recess.
I won’t leave them out when I have my birthday party.
I’ll ask them to play basketball with me.
I’ll share my Pokemon cards.
I’ll sit with them at lunch if they are all alone.
So sorry Mom and Dad; you were wrong. Kids today really don’t have it easy. But thanks to the kind fifth-grade boys and girls at the Franklin Elementary School, life just might get a little bit easier for some.
Spend quality time with your children. That’s what those darn parenting experts love to preach.
However, they obviously don’t understand how challenging that can be when your children’s interests vary greatly from your own, as they do in my imperfect home.
I’m a tomboy for goodness sake. My idea of quality time is putting on my sweatpants and team jersey and watching the New England Patriots play football. It’s “deflating” to me that my daughters have no interest in my interest, as my 17-year-old, younger daughter proved when she relayed some news during a recent dinner.
“Mom, guess what? My friend met some basketball player for the Patriots!”
“Uh Honey, the Patriots play football.”
In truth, my girly-girl daughters’ interests don’t exactly interest me either. They like shopping, or more specifically, shopping for themselves. And their favorite stores aren’t exactly mine.
“Let’s go to Forever 21, Mom!”
“That store is so confusing! They call it Forever 21 because it only takes 21 seconds to give me a headache.”
Recently, however, my 17-year-old daughter, Emily, and I had the opportunity to do something amazing together; something that brought us both unexpected joy and fulfillment.
We spoke to a local Boy Scout Troop about invisible and visible disabilities.
The opportunity came from my friend, Jessica, a passionate troop leader. As part of her leadership goals, she wanted to teach the Scouts to accept others with disabilities and promote peer mentoring and coaching.
Emily and I were a little nervous; this was our first time speaking to children. We did, however, take comfort with the fact that these were not traditional men in uniform.
“Don’t worry, Em; they’re not armed. They can’t shoot us if we bore them.”
I began by telling the Scouts about my older daughter’s journey with autism.
“Kids were constantly calling my daughter weird because she flapped her hands.”
“She hardly ever got invited to birthday parties and didn’t have many friends.”
“Every night when I put her to bed, she would cry and ask. ‘Why am I different, Mom?’ and I would go to my room and cry.”
The Scouts listened intently.
I then asked them if they knew “quirky” kids like my daughter at school and they nodded their heads in agreement.
Then, I introduced them to Emily. I asked them if they could tell that Emily had disabilities and differences. They shook their heads, “No.” I told them about the category of disabilities known as invisible disabilities, and shared stories about famous people who have them.
“Did you guys know that Daniel Radcliffe, Harry Potter, has a disability that makes it hard for him to tie his shoes?”
“No way!” They exclaimed.
“Did you know that Justin Timberlake has OCD? And Michael Phelps ADHD?”
Then Emily explained her “invisible” challenges. “I have learning struggles. I don’t comprehend things that I read. School has always been really hard for me. I feel stupid sometimes.”
She also told them about her biggest challenge — anxiety. We asked the boys if they knew the definition of anxiety and one bright young man raised his hand and said, “It’s when you worry a lot and you’re like afraid to do things because of it.”
Emily agreed. “Yeah, like I worry about things I can’t control. Like the weather.” She also shared her worries and fears about driving a car. “I was in no hurry to get my license because I’m scared to drive.”
We talked about other invisible disabilities, including mental health disabilities, such as depression and bipolar disorder. The boys were familiar with them, providing spot-on definitions.
We closed our discussion by asking the Scouts to do a few things:
- To not be so quick to label other kids as “weird” or “stupid” or “crazy” because they have disabilities.
- To recognize that everyone has something that they are dealing with even if they can’t see it.
- To be kind to those who are different — maybe sit with someone who is alone at lunch or invite them to play at recess.
- To understand that just because someone has a disability doesn’t mean they are not smart or interesting or that they won’t be successful.
- To recognize that other Scouts might struggle with certain tasks and they should offer to help.
Most importantly, we told them that if they did one little act of kindness to a struggling Scout or classmate, they could make a world of difference not only to that child, but also to his mother, father, and whole family.
They seemed to like that.
We sure did.
At the end of the talk, Jessica approached us. “Wow! Thank you so much. They are never that attentive.”
When we walked to the car to go home, Emily gave me a hug and said, “Mom thanks so much for letting me come. I loved it.”
That’s when it hit me; I didn’t need to watch my beloved Patriots to experience a real win with my daughter.
2016 is gone at last. And sadly, even though we’re only a few days into the new year, so too, are most of our sisterly resolutions for self-improvement.
“Here’s your glass of wine, Patty. Extra large, the way you like it.”
“Gina, weren’t we giving up drinking in 2017?”
“I know, but let’s focus on the positive. We had a good 8-hour run.”
Our failings aside, the beginning of the year is a great time to set your priorities, particularly when it comes to the education of special needs kids. To shed light on this subject and provide some helpful suggestions for parents, Gina sat down with our resident SPED Expert, Education Consultant Cynthia DeAngelis, M.Ed.
Gina: “Cynthia, after a long holiday vacation, a lot of special parents are worried about the start of the year and getting their kids the educational support they need to be successful. What can they do?”
Cynthia: “It’s an excellent question, Gina. I have five really good suggestions:
- Dust off that IEP. Many parents get their signed IEP copy and file it away until the next Team Meeting. Take it out of hiding. You should review and update the document frequently throughout the year. Then when the Team Meeting occurs, you have updated information all ready to add to the plan.
- Sit down and review the IEP with your child. It’s important that you involve your child with their educational needs as early as possible. A smart way to accomplish that is to introduce them to the IEP and use it as an outline to discuss their needs. Sit down with them in a quiet room and go through the document together.
- Get out your red pen and start making edits. Begin with the “Concerns” section. I like to remind families that this section helps drive the bus. Ask: What are the areas you are most concerned about? The next section outlines your child’s interests and strengths. Ask: Did they take up a new hobby or develop an interest? For example, did they get a purple belt in Karate, or are they now part of chorus and loving it? Be sure to update new interests on the IEP and revisit this section periodically as your child’s interests change and grow.
Next, review the “Vision” section. The goals in this area are not tangible ones; they are the dreams by which the goals are built. The goals may be a bit lofty, but should be attainable someday. For example, perhaps your child has begun talking about being a writer or a hairdresser.
- Review the accommodations and goals with your child. Read through each goal/accommodation and ask your child if they make sense and if they are helpful. If they aren’t helpful, cross them out then ask your child what they think would be more beneficial. Mark up all your changes on the IEP.
- Bring that marked up IEP to your next meeting. You’ll have a great starting point to discuss where your child is, and at the same time, you will ensure your child’s needs and feedback have been expressed.
Gina: “Thanks Cynthia. This is great advice. I love how you involve the child.”
Cynthia: “You are very welcome, Gina. It’s so important for parents to empower their kids to get involved and do what they can for themselves. That is where self-esteem grows.”
Cynthia DeAngelis, M.Ed., is a Special Education Consultant with more than 35 years of experience helping students achieve success and parents make informed decisions. Gina Gallagher is a highly experienced special needs parent with more than 21 years of making fly-by-the-seat-of-her-pants, imperfect decisions.
IT’S. NOT. ABOUT. YOU.
Of all the wisdom I’ve gathered from the International Library of Self-Help (aka my bookcase) THAT has been the most difficult concept for me to understand. I’m a parent for God sakes. And an imperfect one at that. I think EVERYTHING is about me.
I have from the time my daughters were young.
I thought it was about me when a teacher called to say that one of my daughters was dressed inappropriately. “Oh no! The teacher’s gonna think Katie’s being raised by a stripper.”
I thought it was about me when my other daughter elected to eat Munchkins on the sidelines rather than play basketball with the other munchkins on the court. “WHAT DO YOU MEAN YOU THINK BASKETBALL IS BORING? It’s my best sport!”
And now that my girls are older, I still think everything is about me, as my 17-year-old, high-school senior recently reminded me.
“Emmy, why don’t you want to get your driver’s license? When I was your age, I couldn’t wait to drive around with my friends. We had so much fun!”
“Mom, I’m just not ready right now.”
“I was scared at first, but you’ll be fine.”
“Mom, you’re not listening.”
Our views also differed when it came to her post-graduation plans.
“Can I sign you up for this college readiness camp at Boston College?” I excitedly requested.
“Mom, I don’t want to go to college. I want to be a hairdresser,” she professed.
“You say that now, but when you see how amazing college life is you’ll change your mind. I loved college. It was the best time of my life. Your sister loves it, too.” I responded.
“Whatever Mom. Sign me up,” she said, rolling her eyes.
When she completed the program months later, I could barely contain my excitement to learn about her experience.
“Did you love it, Honey? Isn’t college the best thing?”
“It was really fun. But Mom, I want to go to beauty school. I just don’t think college is for me.”
“You say that now, but you’re young. When I was your age, I didn’t want to go either, but I’m so glad I did. You’ll change your mind.”
Months later, when I noticed she shared make-up and hair tips on Facebook while her friends shared photos of college visits, I realized she was serious about her dream.
So I did the only thing I could do: I caved.
“Honey, I made us an appointment to look at a beauty school next week.”
“Really Mommy?” she squealed. “Thank you so much! I love you!”
“You’re very welcome, Honey,” I responded with false enthusiasm. This wasn’t exactly my passion, since my idea of a beauty day is one in which I comb my hair.
But when we walked through the door of that beauty school one day, I felt a strange and powerful feeling. It may have been from the enormous smile on my daughter’s face, which went all the way up to her big, bright brown eyes. Or maybe it was the excitement for learning I saw when she talked to the students and instructors in the classrooms. Whatever it was, I witnessed my daughter come alive in a way I had never seen before.
And when we sat down with the Admissions Director, she showed newfound maturity, asking pointed questions and demonstrating self-advocacy.
“How do you accommodate for students with learning disabilities?”
“Do your graduates have their own businesses? I want to own my own business and make people feel good about themselves.”
We were there for my daughter that day, but somehow, some way sitting there in that school, I experienced a beautiful transformation of my own: I wanted this for her more than I have ever wanted anything in my life. Anything.
“What do we have to do to make this happen for her?” I excitedly asked.
The Admissions Director turned to me and said, “You’re a good mother for letting her follow her dream.”
As nice as that was to hear, I knew it wasn’t true. I was just a Mom, who after decades of imperfect parenting, finally learned that all-important lesson.
It’s NOT ABOUT ME.
(But the free and stylish haircuts she will give me someday will be.)
Those who don’t understand them may consider them quirky, different, even strange at times. But there’s one thing special kids can never be called…dull. As their parents know all too well, special kids have very unique outlooks on life. And that fact is no more evident than during the gift-giving holiday season.
Recently, we asked parents on our Facebook page a very common question posed during the holiday season: “What gifts have your special children asked for?” The answers, as one might expect, were quite original. We’ve shared them below in our letter to Santa:
Please grant these wonderful, thoughtful, and creative children the following gifts that they have requested:
- 2 million dollars. In gold.
- A time machine.
- No more homeless children or animals.
- Diet cheer wine.
- A bullhorn.
- A jar of mayonnaise.
- An RV (so she can live in the driveway).
- An elephant ride.
- A ventriloquist dummy.
- An airplane to the beach.
- All the flavors of pudding and jello.
- Reptile hides.
- A video game from 1985 — available in Japan.
- A grandfather clock.
- An eyeball backpack.
- White crew socks.
- A shovel and supersonic alarm clock.
- A speed boat.
- A roll of quarters.
- A tape measure.
- A canned ham.
- Smoked oysters and crackers.
- Duct tape.
- A glass eye and a taxidermy moose head.
- A baby named Jamal.
- A military tank — the real kind.
- A purple puppy.
- Two cans of black spray paint.
- Dog food for the local animal shelter.
- Bubble wrap.
- A real baby goat.
- Throwing knives.
- A vampire bat so it will bite his baby sibling and he will have a flying baby.
- A ham radio study guide.
- A huge lump of coal to store in the refrigerator to chip off pieces to sell to those who heat their homes with coal.
- Panda care at a zoo.
- A pile of rocks.
Do you have a wonderful and original gift request from your child you’d like to share? We’d love to hear it.
When we present our workshop, “The 7 Habits of Highly Effective Imperfect Parents,” we’re often surprised by one key response from special needs parents and caregivers (well, besides the fact that they actually do respond to us, which is not something that happens at home). We’re shocked by how few special needs parents practice Habit #3 – self care.
Even more surprising is the way those who do profess to practice self care actually practice it.
I shower. AH, NO!
Once I went to the bathroom alone. TMI!
I attended an IEP workshop. HELL TO THE NO!
I had a mammogram. OUCH!
I had a glass of wine…while reading my child’s IEP. NO, BUT GETTING WARMER!
Call us crazy, but these don’t exactly fit our definitions of self care. Sure, we may not be the sharpest, smartest, fittest, most interesting… (feel free to stop us at any time)… special needs parents on the block, but we are actually quite good at doing things to free our stressed-out, imperfect minds and take care of ourselves.
In fact, ***** BRAG ALERT*****, we are so good at it that Gina’s husband even noticed.
“I figured it out! You guys speak at conferences just one day, but stay the whole week to get out of the house.”
Self care takes practice.
Were we always self care superwomen? NO! When our children were younger and struggling, we rarely left our homes, let alone did anything for ourselves. We even had our own share of excuses:
“The dog ate my gym membership card.”
“I don’t have the extra money with the co-pays and pharmacy bills and all.”
“That would require me actually putting on a bra; I don’t know if I can do that.”
But over the years, as our children (and our worries) got bigger, we realized that taking care of ourselves was not just something we SHOULD do, but something we HAD to do. After all, what good would we be to our kids or our husbands if we stroked out from stress? And how could we ever prepare them for life without us if we never left them?
Two self-caring sisters are born.
Eventually, we each started taking small steps toward caring for ourselves. One of us went to a support group and another went to play adult basketball. Once we got out, we saw how beneficial it was to us and to our kids, who somehow managed to breath air without us (Who knew?).
We even start teaming up on our self-care initiatives.
“So, Patty, are we drinking wine at your house or mine tonight?”
Most recently, we started playing tennis together. We’ll admit that it was a difficult transition at first, particularly with the cussing and dirty looks from neighboring players (apparently their courts are out of bounds) . However, we’ve settled into a nice tennis routine and even use our newly purchased rackets for another shared self-care activity: pretending we’re in a band.
Starting a self-care movement
Self care really does help make imperfect life a bit more
manageable. And as part of our efforts to save the Imperfect World, we’re inviting folks from our 930,000+ Facebook community to join the self-care movement. Each week, special needs parents and caregivers report in to our page to tell us what steps they’ve made to take care of themselves.
So tell us… is there self-care greatness in you? Will you join the Movement and get the hell out of the house (the mailbox doesn’t count)?
Interview with Cynthia DeAngelis, M.Ed.
Who among us has not received this pearl of wisdom from a parent, teacher, clergymen, or life insurance salesman? It may be a pain in the a$$ to keep hearing it, but fortunately, there’s even a preparation solution for that (shout out to the makers of Preparation H hemorrhoid cream).
For special needs parents who must deal with more uncertainties than an undecided voter in this year’s U.S. presidential election, preparation is not just important, it’s critical for survival. Especially when you’re dealing with something as uncertain as the start of the school year. While school is in session many special needs parents are in sessions of their own – therapy sessions – just waiting for “The Wheels on the Bus” to fall right off.
So what can you do to prepare and get your child off to a good start? Our resident Educational Consultant, Cynthia DeAngelis, M.Ed., sat down with Gina, our own imperfect Barbara Walters of the special needs world, to share her 5 Must Do’s for a successful start to the school year.
Gina: “Well Cynthia, I know firsthand that the start of the school year is a very stressful time for parents. I myself went to the liquor store three times during the first week.”
Cynthia: “I agree Gina, but a good start is so important. I coined the phrase “Good Beginnings Never End” and for the most part I believe this. The more we communicate, plan, and prepare for our children’s transitions back to school, the better.
Gina: “So what should we do?”
Cynthia: “Here are five things you can do right away:
- Request a meeting with your child’s Team. Schedule it 4-8 weeks into the school year. You shouldn’t wait for the annual Team Meeting to hear if something is not working or needs to be fixed, but you also need to give enough time for your child to settle in and for the teachers to get to know your child.
- Within the first few weeks of school, send an email titled “Important things to know about my child” to all Team members. This is a short cheat sheet that should make it easy for them to understand your child and his or her learning style. DO NOT WRITE PARAGRAPHS; make a bulleted list as shown below:
- Panics about being called on
- Gets frightened to go to the bathroom because the toilet flushes too loudly
- Has difficultly with the lack of structure at recess
- Gets overwhelmed with too much homework
- Has difficulty sleeping
- At your mid-first quarter meeting, be sure to set the tone that you are all here to work as a team on behalf of your child. First, inquire and listen to the teachers with key questions that get to your biggest concerns. For example:
‘Have you observed my child having difficulty with peers?’
‘What suggestions or strategies do you think we could develop?’
Remember, you have a team of experts in the room with you. Channel them!
- Establish ongoing communication. At your meeting early in the school year, set up the best way you, the Team, and any outside support people can communicate. I find the best way is for the parent to generate an email on a weekly, biweekly, or monthly basis. Ask key questions and communicate any home issues the team needs to know. Be sure to include everyone who works with your child to ensure that everyone is working together as a team.
- Talk about the IEP implementation. The devil is in the details. Again, ask questions, such as:
‘I am interested in hearing how the speech and language program is working to enhance my child’s social pragmatics?’
‘Is it a large group?’
‘Is it a consistent group that meets regularly?’
‘How can I as a parent support the skills my child will be learning?’
‘Would you be able to send me strategies or information about what you are doing so that I can reinforce learning at home?’”
Gina: “Thanks Cynthia. That’s great advice. Now if you’ll excuse me, I have an email to write after my trip to the liquor store.”
Cynthia: “Remember Gina, good beginnings never end.”
Cynthia DeAngelis, M.Ed., is a Special Education Consultant, Advocate, and Trainer with more than 35 years of experience helping students achieve success, parents make informed decisions, and educators find unique solutions. She can be reached at 339-368-0931 or Cynthia.Deangelis@icloud.com.
An Imperfect Interview with Cynthia DeAngelis, M.Ed.
Back-to-school time. For some parents, it’s a time of great sadness, the end to lazy, homework and alarm-clock free days. For others, it’s a time of sheer joy.
I, of course, fall into the latter category. I’m that parent; the complex mother who loves her kids enough to throw herself in front of a bus for them, but sometimes fantasizes about throwing them on a bus. Any bus.
So after 48,000 eye rolls, 17,000 petty disagreements, and 87,000 incidences of my cellphone charger disappearing, I was really looking forward to the start of the school year for my 17-year-old daughter. Oh heck, who am I kidding? I was like Dick Clark, counting down the seconds until the little red van would drop in my driveway and take her to school leaving me all alone: just me and my cellphone charger.
Then the day finally arrived; the hallowed FIRST DAY OF SCHOOL. I skipped alongside my daughter to the van and introduced myself to her somewhat startled, but pleasant driver. “It’s nice to meet you, too, Mrs. Gallagher. I must say, you’re the first parent who’s ever hugged and kissed me.”
As I watched the van slowly back out of the driveway and my daughter pretend to ignore the kisses I was blowing to her, I was suddenly overcome with a feeling of sadness.
Where did the time go?
Then came the worries. So many worries.
What if she doesn’t have a good year and breaks down?
What if her teachers don’t understand her?
What if she doesn’t catch up on the skills she’s behind on?
What if she’s not ready to graduate in June?
Panicked and overwhelmed, I called a friend; a very bright and dear friend who just so happens to know a lot about imperfect kids and imperfect parenting, especially mine. That friend is Cynthia DeAngelis, an Educational Consultant and a very good listener. I like to think of Cynthia as Prozac without the scary side effects.
As she often does, Cynthia helped talk me off the parental ledge. And because my mother raised me to share, I have decided to share my “Cynthia Prozac” by doing a little imperfect Q&A with her.
So without further ado…
Gina: Cynthia, why do so many special parents become neurotic at the start of the school year?
Cynthia (Prozac): Well because they sense how worried their kids are and they know that transitions are often very difficult for special kids. Kids have what’s called “anticipatory” anxiety. They are fearful about so many things academically and socially – they don’t know their teachers, the homework situation, who they are going to sit next to, etc.
Gina: How can parents better understand their children’s school-related anxiety?
Cynthia (Prozac): One of the best examples I give to parents is this: Imagine you are going to start a new job and that your work day will be divided into seven periods with seven different bosses and seven different desks and co-workers you’ve never met. Each boss has different expectations of you and different rules. How would YOU feel about starting that job?
Gina: How can we help our kids manage their anxiety?
Cynthia (Prozac): There are four things you can do:
- First, manage your own anxiety by grounding yourself in the moment. The truth is, that in this very moment nothing bad is happening! Breathe. Don’t move too quickly. Our kids are like
barometers for how we act and think, so if they sense your anxiety, they will become more anxious.
- Then empathize with and validate their concerns. Period. Get out of your adult shoes and step into their smaller shoes by taking a moment to think about their actual experience. Then it will be easy to say something like “Oh yeah, it makes sense that you feel nervous.” Don’t invalidate their feelings by saying, “You’ll be fine. Don’t worry.” Supporting your child to be ‘known’ and understood is what will reduce their anxiety.
- Be genuinely curious and engage them in a conversation: “What was the last situation where you felt this nervous?” Explore how it turned out. Don’t ask leading questions. Make it a real conversation. Help them to expand their thinking repertoire. For example, if they say, “The teacher doesn’t like me,” ask how they know that. Child: “Well she was looking at me with a mean face.” You: [validate first] “Wow, that’s uncomfortable. Hmmm, let’s come up with all the reasons she may have had a mean face.”
- Brainstorm concrete actions/solutions. Ask, “Is there anything that I (or dad) can do to help you with this?” Stay curious and in the moment. “What would you like your teacher to know that would make it easier for you?”
Gina: How can we quell our own parental anxieties other than drinking LOTS of wine (not that I’ve done that or anything)?
Cynthia (Prozac): First, you need to validate your own feelings by acknowledging and accepting that it’s okay to worry. It’s what parents do no matter how old their children are. Heck, even when I was 50, my mother said, “Call me when you get home so I know you got home safely.”
Second, call friends who will understand and validate your concerns. That’s what I love about the “Shut Up” Facebook community. You can post a question and have other parents provide practical advice and support.
Even professional help can be essential. Wine may not be enough.
Gina: Lastly, how do we handle it when our kids come home from school upset?
Cynthia (Prozac): Again, it’s important to validate your children. Validating our children is a new and challenging skill. Most of us don’t have a good model for this skill, which requires practice and mindfulness. I spend a lot of time coaching parents on it.
What you can do behind the scenes is to share your child’s concerns with the school team, asking them to help you. Create an atmosphere where you’re working together to help your child. Make the concerns a team effort. Harness the collective wisdom of your team.
By the way, some of this wisdom comes from the many conversations I’ve had over the years with my therapist husband, Joe DeAngelis, LICSW.
Gina: Really? Clearly I need to visit your house more often. Well thank you. That’s great stuff Cynthia. You really are Prozac for imperfect parents. Tell me do you come in liquid form?
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?
Join our imperfect mailing list.
Looking for a keynote speaker for your event? Patty and Gina speak at a full range of events, including conferences, public and private schools, colleges, corporations, and any other place that will get them out of the house.
Click here for more information on our workshops then call 978-857-4566 or email us.