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.
February 4th, 2016 | No Comments
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.
January 29th, 2016 | 2 Comments
“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.
January 25th, 2016 | No Comments
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.
January 24th, 2016 | No Comments
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.
January 19th, 2016 | No Comments
“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.”
January 6th, 2016 | 1 Comment
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.”
August 11th, 2014 | 2 Comments
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
July 31st, 2014 | No Comments
July 3rd, 2014 | 3 Comments
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.