MOEBIUS SYNDROME IN THE NEWS

It is Rare Disease Day--and so meet our newest young heroine with Moebius Syndrome.  Her name is Jarene, and she hails from Singapore.  She and her mother have accomplished quite a lot.  Read more about it:

**************************

When Madam Sally Kwek's daughter was diagnosed with having special needs, her family thought she was crazy to push her daughter to learn skills such as reading, writing and going to the toilet on her own.

But the 39-year-old mother of one thought otherwise.

She believed that eight-year-old Jarene, who had been diagnosed with Moebius Syndrome, was capable of achieving things just like other children.

Moebius Syndrome is a rare neurological disorder characterised by weakness or paralysis of multiple cranial nerves. In the US, it is estimated that this disorder affects one in 50,000 live births. There is no data on its prevalence here.

Madam Kwek, who started a self-service laundromat business last year, said: "Parents need to tell themselves, even when the world doesn't believe, that you have to believe.

"You must first believe before you will have the courage to try. If you already give up, that's very sad."

Speaking to The New Paper in a phone interview, Madam Kwek said that as a newborn, Jarene had to fight for her life.

"She kept vomiting and she can't swallow so she choked. She would turn blue," Madam Kwek recalled.

"I was constantly searching for a diagnosis, but I couldn't find any. None of the doctors could confidently say 'This is it'. They treated (my daughter) symptomatically."

Jarene was initially diagnosed with central hypotonia, a condition resulting in low muscle tone that is caused by brain defects.

She failed her first hearing test and doctors were not sure if she could even see, so the prognosis was bleak.

"They didn't know what she could do," said Madam Kwek.
It was only when she was 6½ years old that doctors diagnosed it as Moebius Syndrome.
"My girl's smart, she can read and understand things. But the muscles in her face and throat are affected," said Madam Kwek.

As Jarene cannot swallow, she had to be tube-fed from birth.
"She can't blow the candles off a birthday cake. These are the things we tend to take for granted," said Madam Kwek.

Madam Kwek edits Special Seeds, an e-zine for caregivers of persons with disabilities and special needs.

 

Today, Jarene cannot swallow, but she has learnt to swim. She can also speak, although what she says is unclear to most people.

She goes to the Cerebral Palsy Alliance Singapore (CPAS), which offers an academic programme that prepares children for the PSLE.

STAYING POSITIVE: Madam Sally Kwek and her daughter Jarene, who suffers from a neurological disorder called Moebius Syndrome. PHOTO COURTESY OF SALLY KWEK

"When my parents saw my child take a crayon to write her name, it was a mindset change for them," said Madam Kwek.

She hopes Jarene will grow up in an environment with greater access to services for her, whether it is education or common spaces without harassment.

She added: "We shouldn't be put on a pedestal, but we shouldn't be treated like another species too."

*****************************

REMINDER: RARE DISEASE DAY

Don't forget, everyone--this coming Monday, February 29th is Rare Disease Day.  Be sure and join NORD, the National Organization for Rare Disorders, as it raises awareness of all of us and our unique differences with this special day.  And be sure and check out more information below:

************************

On Wednesday, EURORDIS released the official, global video for 2016 Rare Disease Day. The video focuses on the special moments in the lives of people living with a rare disease. EURORDIS says, “everybody experiences those special moments with their relatives, children, friends and colleagues. For people living with or affected by a rare disease, the emotion during these moments can be very strong as they leave behind the challenges they face on a daily basis.”

The video features Elisa, who is living with Williams syndrome, and her parents. We enjoy a look into one of Elisa’s special moments with her family and remember that a rare disease is not what defines a person, it is what makes life’s little moments special to them.

This year, the video was translated into over 20 languages, making a huge impact for the rare disease community. If the video is not yet translated in your language, you can send EURORDIS the translation at rarediseaseday@eurordis.org and they will embed the text as subtitles in the video for you.

Read more about Elisa here and please enjoy the full video below. Please remember to share with your network to help make the voices of rare diseases heard for Rare Disease Day!

You can access the video here.

FOR MOEBIUS MOMS AND DADS: SOMETHING FOR SPECIAL NEEDS PARENTS

From themighty.com:  "Getting a diagnosis you’re unfamiliar with, or one that comes with preconceived notions, is not always easy — especially when it’s your child’s diagnosis. Sometimes, the best way to gain understanding is to talk to  those who’ve been there before.
We asked parents of children with special needs to share one thing they’d tell a parent whose child just got a diagnosis."   Read more about it:

*******************************

1. “Stop. Take a seat. Now take a deep breath. Breathe out slowly. Now set your shoulders, you will have a lot of doctor appointments, therapists, possible surgeries and challenges ahead. You can do this, and you’ll never have to do it alone. We are here for you. We have been there. We will make it together. From one special needs mom to another.” — Nikki Lynn Nichols

2. “You’ll meet many amazing people you would have never met if your child didn’t receive a diagnosis.” — Jennifer Joy Brooking
3. “The ‘label’ is just a name for what is/has been going on with your child. He is still the same child he was before and you are still his parent. Now you just have a starting place to help him.” — Renee Healey Nilson

4. “Now that you do have a diagnosis you have the power to learn all the new ways to embrace the uniqueness that is your son or daughter. Make games out of therapy, learn alongside them what methods work best and ignore those that don’t help.” — Shannon Miskimen
5. “Receiving an unexpected diagnosis is not easy… Go through all the emotions you need to. Then pick yourself up, look at your child and be the parent you always planned on being before this diagnosis showed up.” — Ash N John Bricker
6. “Never give up hope, never settle for what they say your child will not do, always focus on helping your child strive to do everything they can and want to do.” — Tabaitha Delight Travis
7. “Find your village, your people, your support. This will be family and old friends and new friends and most importantly other special needs parents. They get it. You will need to call them, cry to them, complain to them, ask them to do your laundry. They will all learn to love your kids almost as much as you do.” — Katie Smeltzer Ireland
8. “My life is different from everyone else who does not have a child with special needs, [but] I wouldn’t change a thing.” — Suzanne Lee


9.  I was told my son would barely talk, that he wouldn’t be able to understand simple conversations or that public school would not be an option. He’s a seventh grade honors student. Never let anyone push you into underestimating your child.” — Tina Williams
10. “You won’t have all the answers yet. Be proactive, learn. Your providers/teachers/team are on your side and they want your little one to succeed. And when you think your plate is full, get a bigger plate.” — Molly Russell
11. “Focus on what your child can do instead of only what he/she can’t. Stop to enjoy the ‘small’ things and celebrate every success/achievement.” — Gabriel Casanova 12. “[Your] child is not the file/condition. See your child as an individual. Keep your eyes and heart on your child and you will have the strength to do and be what they will need to help them succeed.” — Jenafer Bauerle
13. “Fight for your child’s health and fight for the help your child needs. Also, don’t lose yourself caring for your child. You need to take care of yourself. Remember you are your child’s best advocates and you can’t take care of your child if you neglect yourself. It’s OK for you and your spouse to have date nights, you need them. It’s OK to get a sitter. I remember putting my child to bed and having a candlelight dinner with my hubby and watching a movie on the couch. Sometimes date night are at home, but it’s important for the little things.” — Mellonie Swinford 14. “Though it may be hard, try to find comfort in the diagnosis. You have answers and knowledge… Now that you are armed with this knowledge, you can focus on the best ways to support your child, get the services he or she needs and allow him or her to realize his or her full potential, whatever that might be.” — Leslie Linn Brown


15. “A diagnosis does not determine your child’s future. No doctor can tell you accurately what a typical child’s future will hold, so don’t pay too much attention to all the ‘can’t/won’t dos’ that are attached to a diagnosis” — Kristin Thomas Cutlip
16. “If life was easy, where would all the adventures be? Embrace every moment… Look at your little one for inspiration on your ‘bad’ days; their smile, their determination will pull you through.” — Annemarie Chapman
17. “You have more power than you think. Be a strong advocate to assure your child gets what he or she needs in school. Make sure your IEP plan includes everything your child needs.” — Kelli Kerns Brockington 18. “Respect your feelings. Your feelings will be like a roller coaster.”– Rosa Valledor
19. “Always follow your gut feelings. If something doesn’t feel or sound right, keep investigating. Don’t let educators, doctors, therapists or anyone talk you into something you are uncomfortable with. Keep pushing forward; you know your child better than anyone.” — Bonnie Phillips 20. “Right now you are probably pretty overwhelmed… but I promise you will find beauty in this new beginning.” — Lorrie Ashcraft Stewart
21. “Love your child. Stand up for what your child needs whether it is in an IEP meeting, going shopping or eating out at a restaurant. Try to educate your family and close friends about your child’s diagnosis. Some may not understand. Many may never try to understand. Just love your child and never let anyone mistreat them. Remember, you are not alone. Join a support group. Make friends with other parents who have a child with a similar diagnosis. Lastly, take it one day at a time.” — Renae Lewis Murphy

FOR MOEBIUS MOMS AND DADS: NOT-VERY-INTUITIVE PARENTING

A mom writes, concerning parenting her special-needs child:  "I remember when my son was a baby, my late father told me to stop reading parenting books because it was instinctive. Well Dad, I hope you’re looking down because if you have instinctive answers to some of these situations, I’m sure you could find a way to send me a divine message in a bottle. Otherwise, allow me to introduce you to a new brand of parenting. It’s called “Not Very Intuitive Parenting.”  Not Very Intuitive Parenting (NVIP) means that you must intentionally eschew everything you think you know about raising children and leave your instincts at the door."

Read more about it:

***************************

WHEN EVERYTHING I KNEW ABOUT KIDS DIDN'T PREPARE ME AS A SPECIAL-NEEDS MOM

by Shannon Aronin

I came into this motherhood thing ready. I was in my late 20s, married, had a degree and had started a consulting business so I could work from home with flexibility. I had babysat, worked as a camp counselor, a camp life guard, an after-school program aide, a tutor, a Sunday school teacher, a youth group leader and a volunteer mentor. I once calculated I had worked with more than 1,000 children by the age of 22. I loved kids, that was just a big part of who I was. I had even worked with kids with some disabilities; when I was 14, my first job was a camp counselor for United Cerebral Palsy.

As it turns out, none of that mattered. I was utterly unprepared for what I got myself into. How could my son be so unique from the 1,000 other children I had worked with? With all that experience, surely I must have learned something, right?

Quick, what’s your instinctive response to the following hypothetical scenario? Your 8-year-old with ADHD and autism, who is doing pretty well in life overall lately, is being taken to an after-school activity that is, shall we say, “non-preferred” by a babysitter. On the way, the sitter stops to buy a bottle of water. Child proceeds to scream at the top of his lungs, run around the store, and outruns the sitter and two store employees for 10 minutes until one of the employees threatens to call the police.
I remember when my son was a baby, my late father told me to stop reading parenting books because it was instinctive. Well Dad, I hope you’re looking down because if you have instinctive answers to some of these situations, I’m sure you could find a way to send me a divine message in a bottle. Otherwise, allow me to introduce you to a new brand of parenting. It’s called “Not Very Intuitive Parenting.”

Not Very Intuitive Parenting (NVIP) means that you must intentionally eschew everything you think you know about raising children and leave your instincts at the door. Do you want to know how I handled the above situation? First, I sent him to his room, for the safety of all involved. Then I called the child psychologist to develop the consequence. Then I bought poster board and wrote up a big schedule of his activities to see. I’m currently evaluating social story software in between working full time and dealing with medical appointments for both my child and myself.

NVIP means that I’m not going to succeed at getting my child to hop to with the “mom look.” He doesn’t decode negative facial expressions. Steam could be coming out of my ears, but I need to verbally notify him that I am very angry. I remember it being a fairly obvious rule that you shouldn’t bribe children to get them to do what you want them to do. Many consider incentivizing behaviors as legitimate intervention, however, and it works for us. Applied behavior analysis (ABA) requires you to take data on behaviors like following instructions, potty training, greeting people. Again, this works for us — but none of this is intuitive.

What I want you to know about Not Very Intuitive Parenting is that usually, if you see me practicing it, I want to shout “This isn’t what it looks like!” Yes, there is a reason for why I am hugging and comforting my child who just had what looks like a “bratty tantrum.” Or why when he does something to cause trouble you might just hear me say “one point.” It might look like a dramatic under-reaction, but you don’t know that he is working hard for something and that was a big setback. Usually, if my kid is acting up I’m going to employ specific, strategic responses that have been developed with the assistance of experts and following so many hours of assessments and therapies. It may not look like a reasonable response to you. Trust that I tried it your way at first. No one had better parenting “instincts.” Turns out, I have less use for those native instincts than I expected.

I don’t mean to suggest there is no use at all for a mother’s intuition. I know how high a fever is with a kiss on the forehead. I know when something is wrong. It is the ultimate evolutionary instinct to protect my child above all else. But I also build new instincts. For better or worse, there’s no “because that’s how my parents did it” to fall back on. So, you have to come up with a new way.

My skills in advocating for my son medically and educationally have made me a stronger person. I do trust my instincts over the experts now. But my instincts have been reshaped to incorporate the wisdom of highly educated and experienced specialists whose good advice and guidance have helped him already. It’s been reshaped by online communities of folks in the same boat. It’s been reshaped by trying to keep up with cutting edge research. Now, more often than not, I make decisions based on this specialized body of knowledge rather than instincts. Or at least I do when I’m doing it right and not falling into bad habits and ineffective approaches. So if you too have absolutely no idea what you are doing, it’s OK. It’s not just like riding a bicycle. You adapt and you learn how to best help your child. And that driving love? That is the most intuitive thing in the world.

***************************

ONE OF THEIR STORIES

This is a story written by a young lady from the UK named Debbie; it is published on the website of Changing Faces, a terrific organization based there which works tirelessly to promote acceptance and awareness of those with physical/facial differences, and to prevent discrimination against them.  Here is Debbie's story:

*************************


I was born with congenital facial disfigurement treated by various plastic surgeons. Contrary to popular belief, plastic surgery doesn’t always work miracles. I was left even more scarred after I had remedial treatment.

My condition makes me stand out but it’s been a part of me for such a long time that at the age of 45 years, I’ve learnt to ignore any stares.  Being partially sighted has been a bonus as it means that I also don’t really notice.  My two children are very protective of me as is my husband.  Their support makes me want to be even stronger even when I’m feeling low.

Teenage years are difficult for the best of us, with any imperfections being exaggerated and used to ridicule us, so those with more prominent differences have more to contend with. That part of my life is shadowed in darkness but I was lucky to have my mum who has always been a great source of inner strength.

I didn’t hear about Changing Faces until I was 28 and went to one of their events at the New Norfolk Hotel, Birmingham run in conjunction with The Body Shop.  The workshop was very enlightening and made me aware that I am not alone, that there is support out there. Changing Faces has been instrumental and useful for me in my work life. Facial disfigurement became classed as a disability under the Disability Discrimination Act in 1995, making my career path a lot smoother that it would have been. Although I work in a “back of house job” I have been able to progress from Administrative Assistant to Administrative Executive. If I have faced any form of discrimination as a result of my disabilities it’s been very subtle.

To me, Changing Faces represents light in an otherwise, very dim world. With celebrity/sex being the prominent motivational force in our society we need to work extremely hard to find a counter-balance and Changing Faces helps to do this. They have a team of counsellors, psychologists, and school specialists who continuously support and equip people with the skills to handle everyday situations, and develop self-confidence.

Disfigurement could be hard to handle if you’ve never been faced with it, but you could learn how to cope by being more involved. Like an iceberg, my face is only a small part of me, don’t let it be the only thing you see about me.


********************************

LEARNING TO LOVE...

...yourself.  This is another piece from themighty.com.  Again, this is an interesting essay that I think those with Moebius should read...especially if you have ever felt like this writer _used_ to think.  Do you think you'll never have a relationship with a significant other?  Do you think that no one will ever want you or love you--because you have a physical difference, because you fear you don't fit society's definition of beauty?  Then read on--and think again:

********************

by Jason Freeman

Dear Future Longterm Girlfriend,

Maybe we’ve met. Maybe we’ve not. Frankly, I have no idea. Maybe you’ve been waiting around for me for a long time, even a few decades. Maybe you’ve been waiting while I assumed you wanted me to be something I feel I’m not: “normal.”

My pronounced speech impediment and coordination issues didn’t seem to qualify as “normal.” I assumed you would judge a book by its cover. I figured I knew so much about you. They say lovers can be so close they can almost read each other’s minds. But I doubt this is the type of mind-reading they were talking about.

Maybe all you’ve ever wanted was closeness, freedom to be you and freedom to love me, book cover and all. Know I always loved you, your beauty, your depth, your wits, your smarts, your sense of adventure. But I never gave you a chance to reciprocate and love me fully. I was so scared of you loving me as I was, because that would shine a strobe light on my core failure in life: my failure to love me.

What do you say we start over? (Which is kind of strange to say because we may not have even met yet.) By start over, I mean start with loving ourselves deeply.

Then from there, let’s simply allow ourselves to be loved by each other. Of course, we will most likely add in lots of laughter, kissing, cuddling, romantic walks, yoga, cooking together, and love-making.

*******************************

Note also:

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

WHAT DO YOU MEAN?

Let me stress two things as I introduce this interesting piece I found today.  1] This is a piece from a very interesting website, called themighty.com.  It is designed for people with all different kinds of illnesses, disorders, and differences.  Many of you will find it very interesting.  Check it out.  2] This particular piece was written by a woman who struggles with depression.  I think many of you with Moebius Syndrome will find it relevant and interesting.  I am not saying this because I think tons of folks with Moebius suffer from constant, chronic depression and are truly depressed all the time. 

But I do say this because I know many with Moebius at times have tough days, and at times can get down.  There are days having Moebius can leave you feeling truly depressed.  Fortunately so many of us quickly get back up and get back in there the very next day.  But isn't it kind of irritating when everybody everywhere constantly says "Oh, I'm so depressed!" when...they really aren't. 

Huh?  What is this getting at?  Read on and see:


*******************************

TO THE PEOPLE WHO USE 'DEPRESSED' AS A SYNONYM FOR 'SAD'

by Paige Johnson

Day in and day out, we use a lot of different expressions, like, “You gave me a heart attack!” Did this person really experience a myocardial infarction? No way, they just got really scared. Or when we say, “Break a leg!” do we really wish for this person to break their bone? Of course not. We’re just wishing them good luck.

Many expressions like this are used in our everyday life with no extra thought, but the one expression I see used often, and usually out of context, is “Ugh! I am so depressed!” Now, does this really mean you’re depressed? Or are you just feeling sad? You see, these are two very different terms. One is a normal feeling for a human to experience from time to time, the other can be a mental illness that affects millions of Americans.

 

Let’s think about this for a minute. If our blood sugar dropped and we felt clammy and light-headed, would we say “I am so diabetic!” No. We don’t use other medical diagnoses loosely, so why are mental illnesses not the same? I can’t count the number of times I’ve heard, “Oh my goodness, you are so bipolar!” Or how about, “My OCD is kicking in!” when you’re talking about being organized? These are just a few of the many illnesses many of us have thrown around in daily conversation with no extra thought.

 

Now, I’m not trying to discredit anyone who’s said this and actually is depressed, but I am trying to advocate for the use of this term only when you’re truly experiencing it. As someone who lives with depression, I take offense when a peer thinks they are “depressed” because their boyfriend ignored them for a day or they received a bad grade on a test. Depression doesn’t just go away when we make up with our significant other or do the extra credit to raise our grade. Depression lingers for weeks, months and sometimes years. Maybe what you are feeling is stress, sadness or fatigue, but please do not use a serious medical diagnosis I fight every day as a synonym for sadness.

 

Each time depression, or any other illness for that matter, is used in place of sadness, I feel the mental health community gets a little less credit, like our diagnosis is equal to your everyday sadness, or like the demons we face aren’t really demons at all. It makes me feel like I’m just not as strong as you. I can assure you that I’m stronger than I’ve ever been because of my depression.

 

**************************

 

So please, next time you catch yourself thinking you are “so depressed,” try to think of another way to describe how you truly feel.

 

 

HEALTH UPDATE: WANDERING A "PERVASIVE PROBLEM"?

It can be for children with disabilities, says a recent study. Something to keep in mind.  Read on:

*****************

More than a quarter of children with developmental disabilities wander away from safe environments each year, a new study suggests, and those with autism appear to be at greatest risk.

The findings published this month in the journal PLOS ONE come from what’s being called the broadest study yet looking at the prevalence of elopement among school-age children across the country.

Researchers assessed data from a 2011 survey conducted by the U.S. Centers for Disease Control and Prevention of parents and guardians of more than 4,000 kids ages 6 to 17 with special health care needs.In total, 26.7 percent of parents whose children had a current diagnosis of autism, intellectual disability or developmental delay said that their child had wandered away from a safe place in the last year.

Researchers found that children with autism were most likely to wander, with parents reporting that about 1 in 3 on the spectrum had done so in the previous 12 months. And, kids ages 6 to 11 were at higher risk than those ages 12 to 17, the study found.

“Wandering has become a greater concern,” said Andrew Adesman, chief of developmental pediatrics at Cohen Children’s Medical Center of New York and a senior investigator for the study. “Not only does it pose a significant risk to the safety and well-being of children with developmental disabilities, but fear of wandering can be a daily source of stress and anxiety for parents of affected children.”

Overall, Adesman and his colleagues concluded that wandering is a “pervasive problem” for U.S. children with developmental disabilities.

In most cases, children bolted while in a public place, though parents also reported a significant number of cases where kids eloped from a home or a structured program.

Kids with a history of bolting shared several characteristics that put them at risk, researchers said. These children were less likely than others to realize they were in danger or to distinguish familiar faces from strangers. Kids who eloped also tended to display sudden mood changes, get angry quickly or overreact and they were more prone to panicking in new situations.

“The kids who are most likely to wander are the kids who are least likely to respond appropriately to police or rescue personnel – potentially further jeopardizing their safety,” Adesman said. “First responders need to recognize that children or young adults with an autism spectrum disorder may overreact to some well-intentioned interventions and may be unresponsive to simple commands or questions.”

****************

HEALTH UPDATE: SLEEP AND COLDS

Plus, I find questions like this of great interest, so I guess this also fits in the I Just Thought This Was Interesting Dept.  And who among us doesn't get colds, be he/she having Moebius or not?  So does a lot of sleep help a cold?  Read on:


*********************************

Is there a link between getting a good night’s sleep and the ability to ward off winter ailments like bronchitis, colds and pneumonia?

There’s plenty of evidence linking poor sleep to chronic diseases like diabetes and heart disease, but remarkably few good clinical trials have looked at whether sleep is a bulwark against respiratory infections. One such study, published last September in the journal Sleep, reported that adults who slept less than five or six hours a night were four times more likely to catch a cold than those who slept at least seven hours. 

The trial was one of the first to objectively measure the amount of sleep volunteers got before they were deliberately exposed to the common cold through nasal drops containing the cold virus. A clinical trial in 2009 that relied on participants’ own accounts of their sleep habits also found sleep protective against the common cold. In that trial, volunteers who reported sleeping fewer than seven hours a night were nearly three times more likely to catch a cold after exposure than those who slept eight hours or more. 

An observational study from 2012 of nearly 60,000 women in the Nurses Health Study II also suggested sleep patterns may affect pneumonia risk. It found that women who slept five hours or less were more likely to develop pneumonia, though oddly enough, those who slept nine hours or more were also at higher risk. Dr. Sanjay Patel, the study’s author, suggested that the women who slept excessively may have suffered from poor quality sleep. It is also possible that being in the sleep position for an extended time increases susceptibility to pneumonia, since bacteria that colonize the nose and throat may drip into the lungs, he said. Sleep scientists were not aware of any studies examining the role of sleep in bronchitis. 

Scientists are uncertain how sleep might help fight infections, but sleep is known to play a role in the regulation of the immune system. Studies suggest that sleep deprivation, for example, may lead to a weaker antibody response to vaccination, Dr. Patel said. Insufficient sleep “seems to reduce the functioning of cells like natural killer cells and lymphocytes that are important in giving you an immune response.”

************************************

FOR PARENTS: HOW TO CONNECT WITH YOUR DAUGHTERS? THROUGH FOOTBALL??? MAYBE.

I know there are moms and dads with Moebius kiddos who like football.  Here's an interesting take on it as a family activity.  A mom wrote today:  "I hoped one of our girls might take an interest in art, music, animals – anything that would enrich their developing middle-class souls – thanks to my deliberate, but also monumentally naive, choice to expose them to all things sophisticated.  But none of that proved as lasting or successful as my husband’s persistence in cultivating their zeal for our nation’s Sunday religion: football."

But it turns out to be okay--that this kind of "enrichment" is a good family activity, too.  Read on:

**********************

In my 11 years as a stay-at-home parent, our memberships to art museums, historical societies, botanical gardens, metroparks, zoos and childrens’ rooms all provided enjoyable (barring the inevitable colossal meltdown), educational (“Mommy! They sell chewy snacks at the zoo cafe!”) and cultural (“Can we pleeeease run up the down escalator at the art museum?”) experiences for our three daughters.

I hoped one of our girls might take an interest in art, music, animals – anything that would enrich their developing middle-class souls – thanks to my deliberate, but also monumentally naive, choice to expose them to all things sophisticated.

But none of that proved as lasting or successful as my husband’s persistence in cultivating their zeal for our nation’s Sunday religion: football. More specifically, Cleveland Browns football (I know all you Beltway readers think you have it so hard with your Redskins).

Since our girls were old enough to appreciate the gridiron, my husband Tony has systematically developed in them a genuine interest in his Brownies. He paved the way with kid-friendly gimmicks. First, he gave the day a name – “Hey girls! It’s FOOTBALL SUNDAY!” Then, he wooed them with special Football Sunday foods: chips, cheesy puffs, onion soup mix dip, biscuit-mix cheese balls, soda. During the week, he’d enlighten us with what the football world was saying about “our” team, sharing the on- and off-the-field mishaps of the players and, less frequently, their accomplishments. In the hour before each game, Tony and my brother-in-law Steve took the girls outside to toss the football around in the street. When the Browns won, Tony took the Browns flag from the front of our house and paraded with the girls down our town’s well-traveled boulevard, earning supportive honks from passers-by.

The first few seasons, I wasn’t at all a fan. I didn’t see the point in screaming at the television, applauding hard hits and arguing with officials who couldn’t hear our opinions. I thought the junk food would be a slippery slope. I couldn’t sit still for three hours 16 Sundays a year (lucky for me, a Browns season wasn’t –and still isn’t – any longer) and I found the whole thing self-serving. I thought he was capitalizing on our girls’ desire to spend time with him any way they could.

Thing is, the girls actually liked it. Tony bought them Browns gear and insisted they show their spirit at game time. Together, they planned the Sunday menu – always soda, always my guacamole, always chips, sometimes nachos. The girls began refusing play dates during games, opting instead to sit in our undersized TV room with Tony to watch the Browns (more often than not) lose. Before long, our middle daughter knew an offensive tackle from a tight end and was well acquainted with our club’s status as an NFL joke.

When I left the room during games, the girls asked why I wasn’t sticking around.
I’d tell them I was fine, that I just wanted to do something else.

But the truth is, I was a sore loser: I was hurt that they didn’t find my ideas of enrichment as interesting. I couldn’t stand that my role as a stay-at-home mom seven days a week paled next to a Football Sunday. I found respite in the off-season.

But during last year’s off-season, Tony upped his game. He started talking about the draft right after the Super Bowl. There were nightly updates on who might and might not be our quarterback. He’d gently tease me, “I know you can’t wait for it, Jen. Come on, it’s the NATIONAL FOOTBALL LEAGUE, right?” Then, turning to the girls for support and with childlike awe, he’d add, “Wowwwwww.” The girls would giggle. And soon, I was laughing, too.

Maybe it was the relentless exposure. Or Tony’s enthusiasn. Or maybe I finally saw that enrichment didn’t have to be so refined. Maybe we could just have fun huddled around the TV on a Sunday, united in our hopes and prayers that our losing team might one day be a winner. I warmed to the idea of Football Sundays – and it was only June.

So last Sept. 13 – the first Sunday of the Browns season – I put on my Browns T-shirt. I made the guac. I bought the chips and the soda. Earlier that week, we had invested in a smoker, declaring Football Sunday would also be Smoking Sunday. We made a mound of pulled pork and cole slaw to boot. It was a new season for the NFL, a clean start for Browns fans and a new experience for me. This season, I would commit to watching and engaging with the family.

Sure, the Browns had a losing season, but those Sundays between Sept. 13 and Jan. 3 were the best consecutive 16 Sundays we’ve had as a family. And this year, I’ll actually join them in watching Super Bowl 50. The girls are excited for the halftime show and the commercials, and I can get my culture and entertainment elsewhere. The thrill of the game is enriching enough.

Jennifer Kuhel is a writer who lives in Shaker Heights, Ohio.

************************

AWARENESS UPDATE: GOOD NEWS DEPT

A couple of items are worth noting.  First:  inclusion of those with differences appears to be on the rise in our schools:

A growing number of students with disabilities are spending most of the day in regular education classrooms alongside their typically-developing peers, according to new federal statistics.
As of 2013, more than 6 in 10 school-age students served under the Individuals with Disabilities Education Act spent at least 80 percent of their day in regular classrooms. By contrast, roughly half of students with disabilities met that threshold in 2004.
The figures come from a report to Congress issued late last year by the U.S. Department of Education outlining the progress of the nation’s special education students.
In sum, the annual report indicated that more than 5.8 million students ages 6 to 21 were served under IDEA in 2013. Meanwhile, 745,000 children ages 3 to 5 and 339,000 infants and toddlers received services through the program.
While the overall number of school-age children with disabilities declined between 2004 and 2013, the percentage of those identified as having autism soared by as much as 258 percent across age groups over the 10-year period, the report found.
Some 95 percent of special education students spent at least some of their day in general education classrooms in 2013, according to the federal data. However, students identified as having intellectual disabilities or multiple disabilities were least likely to spend the majority of their time in inclusive environments.

******************************

Item #2:  Lego is about to roll out a new mini-figure...in a wheelchair.  

Lego said it will include a boy in a wheelchair in a forthcoming set of its iconic minifigures.
The toymaker confirmed the plan this week after a handful of websites that report on Lego revealed pictures and video of the new product taken at an industry event recently in Germany.
The wheelchair will be part of a LEGO City set called “Fun in the Park” that will be available in June, said Michael McNally, senior director of brand relations for LEGO Systems, Inc.
This isn’t the first time that Lego has included a wheelchair in its product line but McNally said it does mark the “first wheelchair molded at LEGO minifigure scale.”
Previously, McNally indicated that the company offered buildable wheelchairs and a LEGO DUPLO wheelchair.
Lego and other toymakers have been encouraged to offer products representative of people with disabilities by the U.K.-based campaign Toy Like Me.
“This move by Lego is massive in terms of ending cultural marginalization, it will speak volumes to children, disabled or otherwise, the world over,” the group’s founder, Rebecca Atkinson, said in a statement.

*********************

STORIES OF MOEBIUS HEROES/HEROINES, PART 2

Moebius Syndrome Awareness Day also brought out the best (once again!) in my friend Kelsey Ferrill.  Read her story:

*****************************


CALGARY – Kelsey Ferrill has a lot to smile to about. And just because you might not be able to see her grin – her friends know it’s there.
“She just has this vibe that you don’t really even need to see to know she’s feeling happy,” said friend, Katlyn Mclaughlyn.
“Kelsey is a really positive person… when she talks about her life it’s always in a super positive way,” said another friend, Jennifer Meehan.
The 25-year-old University of Calgary communications student was diagnosed with Moebius Syndrome when she was six-months-old. It’s a rare neurological condition that affects cranial nerves and causes facial paralysis.
When Ferrill was about five-years-old, she had what’s called a smile surgery.
“They take muscle from your thigh and transplant it to your face, to back here [behind my cheek], so I can smile, somewhat,” said Ferrill.
Ferrill admits, living with the rare condition has been a challenge at times.
“Just the way that people tend to judge you – if you look different, or whatever.”
Ferrell is one of about 10-15 people living with Moebius Syndrome in Canada.
She said, she isn’t taking the smile she does have for granted.
“I think we not only take for granted our facial expressions but I think it is also important to realize all the ways we express ourselves daily,” said Meehan.
That’s the idea behind Moebius Syndrome awareness day.
“For me, I don’t have facial expression or anything like that, so I have to express myself in different ways. Like through my writing and stuff,” said Ferrill.
“I express myself through music. I love to sing, not always well,” laughed Mclaughlyn.
“I express myself through dance; I’m always doing a little wiggle – whenever, wherever!”
Whatever the expression, there’s hope Ferrill’s positive message is just as contagious as a smile.