Since the day my mother passed away five years ago, I’ve often thought about what I would say to her if given one last opportunity.
Would I tell her how very much I miss her?
Thank her for all the sacrifices she made for me?
Tell her that my brother, sister, and I are taking care of our father as she asked us to do?
At one point, I thought I might have told her all of that. But now that my two daughters with disabilities have grow into young women, I wouldn’t tell her any of those things. Instead, I’d say Four. Simple. Words.
The kids are alright.
The words should come as no surprise to her; for years, these were her words to me. Soothing words she shared with me every time I cried to her about some struggle one of my daughters was experiencing growing up.
I cried to her when one daughter suffered traumatic bullying and had to leave school for nearly two years.
When I heard about more birthday parties another daughter wasn’t invited to.
When a neurospyschologist told me one would have to be sent to a boarding school far away.
When an uninformed neighbor told all the neighborhood kids not to listen to my daughter because she was “slow.”
Each time I cried to my mother, she uttered those same words.
“Gina, you have to have faith; the kids will be alright.”
Seeing my children struggle couldn’t have been easy on my mother. She once admitted that, telling me that “raising a special needs child is especially difficult on grandparents.”
“We have to watch our children and our grandchildren struggle.”
And I’m pretty sure she, who was racked with her own anxiety, spent many sleepless nights worrying about us. But still, she never wavered in her faith.
The kids will be alright.
In my own pain and suffering, I was almost angry at my mother for deluding herself. How could my kids be alright? Their childhoods were already so difficult; their lives as adults could only be more challenging.
And what did my mother, who raised three typical kids, know about raising kids with disabilities anyway?
But she did know. I should have listened to her. She saw things in my kids that my pain, fear, and anxiety blocked from me; something I needed so badly, but couldn’t even fathom.
She saw hope.
And today, five years later, with my daughters age 20 and 17 respectively, I finally see it. My daughters both have exceeded my expectations. The daughter the neighbor referred to as “slow” is in her third year at a traditional college and has her driver’s license, a great summer job, and a few very good and loyal friends. The other, a junior in high school, has overcome traumatic bullying experiences and will soon be on her way to fulfilling her passion of becoming a hairdresser. Both are even in healthy and happy relationships with loving, generous, and kind young men.
So mother, if you just so happen to be listening; please know, you were correct.
The kids really ARE alright.
April 28th, 2016 | No Comments
April 5th, 2016 | No Comments
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!
March 31st, 2016 | 2 Comments
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?
March 25th, 2016 | No Comments
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.
March 21st, 2016 | No Comments
March 16th, 2016 | No Comments
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.
March 14th, 2016 | 3 Comments
“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?”
March 11th, 2016 | No Comments
March 10th, 2016 | No Comments