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.
March 4th, 2014 | 5 Comments
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.
January 30th, 2014 | No Comments
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!
January 21st, 2014 | No Comments
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.
January 16th, 2014 | No Comments
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.
December 29th, 2013 | No Comments
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?
December 9th, 2013 | No Comments
Wanting to be free
Wanting to be me
Trying to make people see
And accept the real me
Some people think my voice is too loud
And that my mannerisms strike them as being odd
This perception of me by others keeps me feeling blue
But there are plenty of struggles in life that I must get through
I am determined to show my critics my true personality
Hoping that people move away from their narrow-minded mentalities
I want them to know that I am a bright young man
Who is willing to take on as many challenges in life as I can
December 6th, 2013 | No Comments
And so it begins. Again. The stress/anxiety of playing catch-up during the holiday season. Not sure how I got so behind this time. I mean it’s not like I haven’t had ample time to prepare, since retailers started the holiday season a tad earlier this year – July 5. In fact, I think they’ve even changed the name of that popular holiday Christmas preparation song – The 120 Days of Christmas.
This was going to be it – my YOP (Year of Preparation). I was even going to accomplish something I haven’t done since my girls were young – a holiday Christmas card. I would shoot it on Thanksgiving, when my oldest was home from college. How hard could that be? Clearly not as difficult as it was when my girls were little and wouldn’t stay put, right?
At least that’s what I thought, until I realized they don’t exactly get along.
“That’s great girls, but now let’s take a photo of you two without your hands on each other’s throats.”
What’s worse is that I didn’t even have my parents to help me this year. My mother passed away two years ago and my father “retired” from holiday photos when my kids were young.
“Gina, don’t ask me to come with you to take holiday pictures again. I don’t need that heavy stress at my age.”
Truthfully, I can’t really rule out that my mother’s heart condition was not caused by my kids’ holiday photo stress. (Sorry, Heavenly Mother.)
On to Another Imperfect Plan…
Well, if I couldn’t do the card, at least I could accomplish something else on my holiday preparation list – putting up holiday decorations early. Of course, I should have known that my busy schedule would foil that plan.
“Mom, can we put up the decorations tonight?”
“I can’t, Honey. Tonight the Real Housewives of Beverly Hills are on.”
“How about tomorrow night?”
“Nope. Can’t do it. I’ve got two episodes of Shah’s of Sunset to catch up on.”
Of course, my “helpful” kids (at least when there’s something in it for them) offered to pitch in.
“If you give me a $100 bucks, Mom. I’ll do it.”
Honestly, I prefer to decorate without them. Let’s just say our decorating styles are not in sync, especially when it comes to Christmas tree lights.
“Girls no offense, but I don’t like my Christmas tree to look like the Palms casino. I like white lights. They’re very elegant on the tree.”
“But Mom, that’s so boring.”
One year, I compromised and bought a fake tree that came with a remote control. With the click of a button, I could change the lights from tacky to elegant. I had quite the system down.
“Mommy, why did you change the colored lights when I went potty?
Well, at least until my husband seized control of that clicker, too.
“Awww, come on Gene, we like the flashing lights.”
While I may be a holiday procrastinator, my 14-year-old daughter doesn’t take after me. I was quite impressed when on August 30, she handed me her Christmas list, stating quite proudly, “Mom, I only have two things on my list.”
“Em, I am so touched; you’ve finally realized the true meaning of Christmas,” I proudly responded, before I realized that one of the items on her list was a Lexus. (Kudos to Lexus on an effective advertising campaign, since my daughter doesn’t even know how to drive.)
But despite my slow start again, I know that on December 24, I’ll have my elegant white-lighted tree up with ample presents underneath. I also know that I’ll take it down… eventually… sometime…when I get around to it.
October 23rd, 2013 | No Comments
September 29th, 2013 | No Comments