FOR MOEBIUS MOMS AND DADS: FIVE TIPS TO HELP BOTH YOU, AND YOUR CHILD, SLEEP THROUGH THE NIGHT

A number of people who have Moebius have sleep issues.  Some have night terrors.  For others, it is even more complex.  And really, all babies at various times will have trouble sleeping.  So what can you as parents do (besides suffer? :+)  Here are some tips:

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When we first became parents, my husband Kevin and I decided we would game the system. We figured that if our baby was only going to sleep for a handful of hours at a time, why not get him on the same sleep schedule as us?

So, night owls that we are, we ignored experts’ advice to put our kid down at what we deemed a ridiculously early hour. Instead, we’d trot him out to dinner with us in his baby carrier or hang out with him in a bright living room while we caught up on TiVo until Kevin and I were finally ready to call it a night. We were going to be the fun parents, the ones whose lives didn’t have to change just because we had a baby!

Ha, ha, said the system, refusing to be gamed.

Of course, our little experiment didn’t end well: Our little angel would suddenly become completely wired when we tried to put him down, protesting with all his might at the very suggestion of sleep. Or he’d pass out in his carrier and we’d transfer him to his crib—carefully, gingerly, with the deft exactitude of someone disarming a bomb—only to have him wake fitfully an hour later. Kevin and I took turns getting up with him, half-parenting through a haze of sleep deprivation. Often, glued to my pillow with exhaustion, I would offer Kevin cold hard cash if he would take my turn and just get up with the baby. Our marriage became a negotiation around sleep. No one ever had enough of it, and everyone was cranky about it.

But apparently, we’re not the only parents who didn’t have it all figured out on the first try. Carrie Dunn, a sleep coach and mom of four, laughs empathetically at the sad familiarity of my story: “In some families, the parents don’t sleep together at all anymore—one parent spends the night with each kid,” says Dunn, who’s seen that sleep issues can drain not only a person but also a marriage.

Now Dunn works with families of children between the ages of 4 months to 6 years to help them come up with sleep plans of their own, taking into consideration everything from a baby’s temperament and medical history to the family’s parenting philosophy—including whether the parents have decided to co-sleep. She often hears complaints about kids being overtired: “Parents say to me, ‘I know they’re exhausted, so why are they fighting sleep?’” says Dunn. “But when kids miss their sleep window”—that moment around 7 or 8 p.m. when, for example, they start rubbing their eyes, yawning, getting a blank look on their faces—”they produce more cortisol, the stress hormone, which overstimulates makes it harder for them to shut it down and go to sleep.” This is true for adults, too.

Dunn, 38, became a sleep coach after facing bedtime challenges with each of her four kids, all of whom had varying degrees of reflux. (“You would think that at least one of them would have magically slept through the night on their own—no such luck,” she laments.) After poring over every sleep book on the market, she ultimately sought the advice of a sleep trainer who helped her devise a plan specifically for her family. “Books that promise 12 hours of sleep at 12 weeks aren’t necessarily realistic,” Dunn realized. “There’s not a one-size-fits-all solution.”

“There’s truth to the adage that sleep begets sleep,” explains Dunn, helping me understand why my friends’ kids who went to bed at their natural bedtime ended up getting both better quality sleep and logging more hours of rest overall. Also, Dunn says, better naps lead to better nighttime sleep: Those who aren’t getting enough restorative sleep during the day—not just zonking out in the car (“nap stealers,” Dunn calls them)—become overtired, which contributes to disturbances in nighttime sleep.

Obviously, getting your infant off to a good start is the ideal plan (Dunn says that around 6 to 9 months is a good time to start sleep coaching, since that’s often when long-term sleep patterns start to emerge)—but even if you didn’t, it’s okay. “If your 4-year-old is still co-sleeping and you’re ready for her to be in her own bed,” says Dunn, “we can change that. It’s just going to take longer.”

Dunn also looks at coaching as a family affair: “My goal is to help families get the sleep they need by empowering them to implement a plan together. At the end of coaching, the family needs to feel that if their sleep schedule breaks down after, say, a time change, or illness or travel, they can handle it.”

Whether you got your kid off to a great start and you’re now seeing his sleep patterns change or you decided to go rogue with your own sleep plan and are now wishing for a well-rested child over schedule flexibility, here are some of Dunn’s smart sleeping tips that apply at any stage:

2. Create an atmosphere that’s conducive to sleep. This means straddling the line between comfort and distraction. Aim for a dark room, a white noise machine or fan, a space that’s free of overstimulating toys. “You can use soothing music to start the sleep routine, but just make sure to turn it off before the baby falls asleep”—that way, if he wakes up in the middle of the night, he won’t be startled by the silence.

1. Establish a predictable and consistent bedtime routine. This is your baby’s cue that it’s time for sleep. This might include a warm bath, a massage with lotion (Dunn says it’s great for helping babies slow down, but my babies were way too squirmy for this), reading books, saying prayers, or singing songs. “Try to do things in the same order to help create predictability,” says Dunn. Older children can participate in the ritual—putting books away, turning off lights, brushing their hair. “Kids thrive on routine, and it’s even more important at bedtime.”

3. Give your child the space to learn to go to bed on his own. In order to help your kids learn to self-soothe, children 18 weeks and older can be tucked in for bed drowsy but awake. “If you’re nursing them, don’t nurse them until they fall asleep—or move the nursing aspect to earlier part of the routine,” says Dunn. “Create a loving bedtime routine, but step out of the room before they’re totally asleep.” So when they wake up in the middle of the night, they don’t need you to come back into the room until they fall asleep again.

4. Decide where your child will sleep and stick with it throughout the night, even if the child wakes. “It’s so easy to let them come and cuddle with you,” Dunn acknowledges, “but it’s confusing to the child and can cause him to wake more at night. It’s best to return him to his own room and stay with him if he needs comforting. Gradually wean yourself out of the room, the goal being that he’ll eventually learn that Mommy and Daddy are nearby and that he can fall back asleep on his own.”

5. It’s never too late to start getting good sleep. “If your 6 year old still isn’t sleeping by himself and you haven’t seen your spouse in six years,” says Dunn, “you can still come up with a good sleep plan.” Parents can involve older kids in the process on an intellectual level by starting a sticker chart or coming up with an incentive plan (such as taking them to the book store to pick out the next bedtime story) and gradually implementing it.

Adrienne Wichard-Edds is a freelance writer who’s still catching up on 11 years of sleep deprivation. Follow her on Twitter at @WichardEdds.

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HEALTH UPDATE: UNTANGLING THE LATEST ASPIRIN STUDY

Do some of you take a daily aspirin to help fight off heart attack and strokes? Well, you may not need to after all--read on:

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If you're taking aspirin to prevent heart attack and stroke, there's a chance you may not need to be popping the little white pills after all.

Researchers at Baylor College of Medicine and several other health institutions studied records of 69,000 people taking daily aspirin for primary prevention of heart attack and stroke. They concluded that more than 1 in 10 of them didn't need to be taking the over-the-counter drug because their risk of developing heart disease was too low to warrant a daily aspirin regimen, according to the study published this week in the Journal of the American College of Cardiology.

"Aspirin is a really powerful drug but it can cause serious side effects," said ABC News chief health and medical editor Dr. Richard Besser. "It is very important that it only be used in those people for whom the benefits outweigh the risks."

Aspirin risks can include stroke caused by burst blood vessels and gastrointestinal bleeding, both of which can be fatal, cardiologists say. But the researchers in this study did not look at aspirin-related complications -- such as gastrointestinal bleeding or ischemia -- in people taking it inappropriately.

"People have a tendency to think that aspirin is a benign drug, which it is not," said Dr. Daniel Simon, chief of cardiovascular medicine at UH Case Medical Center in Cleveland, Ohio.

People should take daily aspirin for heart disease prevention only if they have a more than 6 percent risk of developing heart disease over the next 10 years, according to the American Heart Association. This new study deemed anyone taking daily aspirin with a lower risk to be using the drug "inappropriately."

Simon said people can use online tools, such as the Framingham Risk Score, to determine their risk, or ask their doctors. Questions generally include age, gender, smoking status and family history.

The Journal of the American College of Cardiology study did not include people who had already had a heart attack, stroke or anything else that would warrant aspirin for prevention of a second cardiovascular problem. They also did have information on specific aspirin doses.

Researchers cautioned that their study could have underestimated inappropriate aspirin use in part because participants self-reported their aspirin use and aspirin is available without a prescription. They also noted that because they got their data from the PINNACLE cardiovascular patient registry, and PINNACLE practices are pushed for quality improvement, that non-PINNACLE practices might have even higher instances of inappropriate aspirin use.

Dr. Walter Clair, interim executive medical director of the Vanderbilt Heart and Vascular Institute, said he often sees patients who self-prescribe aspirin, but don't need it. This is because people who have hearts that skip beats, for instance, don't need to take aspirin.

"When I delve into why, they confuse the fact because they have an electrical problem, they have a plumbing problem," he said.

Still, some people need to be on aspirin and don't take it because they don't like the bruising.

The bottom line, Besser said, is that if patients are unsure, they should ask their doctors.

"Given that the recommendations for its use have been changing over time and that some people for whom it was once recommended should no longer be taking it, patients who are on aspirin should ask their doctors whether it is still the right drug for them," Besser said.

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FOR MOEBIUS MOMS AND DADS: HOW FACEBOOK PARENTING CAN BACKFIRE

Now, I do not think that seeking parenting advice and ideas via social media is always wrong, not at all...and I don't think the author of this piece is suggesting that, either.  But there are indeed possible problems and pitfalls when you kind of "crowdsource" your parenting questions...and this article brings some of those out very well.  Some good things to think about anyway.  Read on:

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Just about every day on Facebook, I see posts by parents asking for advice related to their children. Granted, many of my friends are parents, but I imagine you see similar posts when you log on as well.

And pretty much every time I read one, I wonder about the pluses and minuses of a world in which many parents now head to their social networks to make parenting decisions.

Sure, getting advice on how to get a toddler to sleep through the night or how to deal with a fussy eater makes sense and seems relatively harmless. But is there something creepy about picking a baby name based on Internet responses or deciding on a punishment based on the opinions of followers?

Last year, an expectant father created a website, NameMyDaughter.com, allowing anyone on the Internet to suggest and vote on a baby name for his daughter.

10 signs you might be addicted to your smartphone

Thankfully for his child, who was born in April, he and his wife reportedly did not go with the winning name of "Cthulhu." Instead, they chose the second place name, Amelia.

My question: How is Amelia or any other child named by strangers online going to feel when they learn the origin of their name?

"I am sure the child will be happy to know that her name was approved of by thousands of strangers she will never meet," said Vicki Hoefle, author of the book "Duct Tape Parenting: A Less is More Approach to Raising Respectful, Responsible, and Resilient Kids."

"Can you imagine the outrage an adult would have if, say, a guy crowdsourced whether he should propose or not?" asked Hoefle, a mom of five who has spent the past two decades working with families on parenting.

Asking not just your followers but random strangers to choose a name for your child is no doubt one of the more extreme examples of crowdsourced parenting, but what about deciding discipline based on social media responses or asking for help with deeply personal issues such as a child's depression or anxiety, or a case of bullying, or a child's exploration of sex?

In conversations over email with parents across the country, I found a real split in opinions about whether using social media to help parent is positive or inappropriate.

Put mom of four Janeane Davis in the positive camp. She said that since many of us live far away from our parents and friends, "social media crowdsourcing is a quick way of getting a lot of opinions and ideas at one time."

Davis, founder of the blog Janeane's World, said she only crowdsourced for her children once.

"I asked people how they got their sons to behave better at home and school. I did get some good ideas. I tried one of them, and it worked," said Davis, who said she'd do it again.

Louise Sattler, a mom of two grown children in Los Angeles, also believes crowdsourced parenting is OK in certain cases.

"We use to call it getting advice during coffee klatches," said Sattler, a school psychologist, educational consultant and owner of a business providing sign language instruction.

28 web abbreviations parents should know

Pam Moore, host of the blog Whatevs, believes there is an age limit on when it's no longer OK to discuss a child's behavior on social media and ask for help regarding that behavior, even though she admits she's not quite sure what that key age is.

"Whether it's tantrums in kindergarten or wetting the bed at age 9 ... I believe children still have the right to some privacy about their lives," said Moore, a mom of two who writes about motherhood, marathons and life in Boulder, Colorado.

"I think that if you aren't sure whether to post something about your kid on Facebook, ask yourself how the child (and you) would feel if he or she ever came across it at the age of 12. If you wouldn't want him or her to see it on your timeline, then it's probably not a great idea to post it on Facebook."

There are things that happen within the family that do not need to be aired in public, said Tracey Koch, a mom of two and nurse practitioner who works with teens in Lewiston, Idaho.

"I think you are risking your child essentially shutting down if you publicly discuss punishment over social media. The postings are too easily shared, and information spreads too widely."

Beth Engelman, a mom of a 9-year-old in Chicago, agrees. She also thinks parenting by crowdsourcing, which can lead to a multitude of suggestions, can be overwhelming and make parents feel less secure about their own instincts.

"I think the ease in which parents can go to social media often chips away at their confidence to trust their gut," said Engelman, co-founder of the blog Mommy on a Shoestring.

"The more you are reliant on others to help you make decisions, the less confident you feel making decisions on your own."

Another issue, said educational psychologist, consultant and parenting coach Lori Day, is when parents rely on social media, when they should instead be talking to professionals such as a teacher, pediatrician or child psychologist.

Teen 'like' and FOMO anxiety

Day notes that people may too often view the advice of some followers and friends, especially popular bloggers who have a large digital footprint, as experts, when in fact they don't have any expertise on the issues at hand.

"It's not necessarily about what your credentials are because you could be one of those really wise parents that has really good advice, but sometimes the way I see it articulated, it's almost as if the person is a psychologist and they're in positions that they really don't know about and they aren't educated on, they have no work experience on, and that gets me worried," said Day, author of "Her Next Chapter," a book about mother-daughter book clubs.

"That's when parents really need to be seeking out professional help."

Separated at birth, reunited on Facebook

Hoefle, whose newest book "The Straight Talk on Parenting" will be released in April, encourages parents to see themselves as "the true experts in their children's lives," not their thousands of friends and followers on Facebook and Twitter.

"By answering just a few questions, they can begin to see clearly the strategy that will work best for their children and one that they can actually implement to get the kind of long-term sustainable change they are looking for."

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FOR MOEBIUS MOMS AND DADS: HOW TO DEAL WITH YOUR CHILD'S FEARS

Now in the case I'm quoting from below, the advice columnist is not dealing with a Moebius child; and the specific fear has to do with being left home alone (the child is 12).  But--all children have fears, all Moebius children probably have fears, and the principles that you might want to use as parents to deal with those can certainly be adapted from what we see below.  Read on:

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My daughter just turned 12, and she refuses to stay home alone, even for short periods of time. She’s never had separation issues, never a problem dropping her off at school or a friend’s house. She is a bit of a worrier and says she’s afraid someone might try to break into the house. She has also said she doesn’t want to grow up, wear a bra, etc. Any suggestions? Give it more time? Am I missing any big red flags?
Anonymous
There may be more to this, but exploring that is near the end of the series of steps. The early steps are to add to her responsibilities in small increments. Give her more complicated chores, maybe teach her to prepare meals for herself or do her laundry or mend her clothes or take on other jobs that adults routinely do. When you go to the store, tear the list in half and give her a separate cart. Stuff like that. If you already do these things, then find ways in your daily family life to take it up a notch — all of it, presumably, as you’re in the home or the vicinity of it. Make grown-up things mundane and do it without the separate stress of her being alone.
As her confidence improves, look for a “home alone” course. A local Y or community center might have one. They’re generally for tweens and cover telephone, front door, first aid and emergency practices.
Also consider a Red Cross babysitting course, first aid course or something else for kids that teaches concrete skills.
You can use summer camps, too, toward this effort. A sleep-away would be ideal, but if she’s not ready, then consider one that’s oriented toward skill-building.
If she remains fearful despite patient efforts to build her confidence, then it’s time to seek professional guidance in exploring her fears. Her pediatrician or school counselor can probably get you started.
Re: Home alone:
I was the same way growing up. I refused to go to sleep-away camp. My parents indulged me on camp but eventually gave me more responsibility until I was more comfortable staying home alone. Eventually I grew up. I went to college several states away and joined the Peace Corps. Your daughter’s going through a phase. Increasing her responsibility and being patient while she adjusts will go a long way toward mitigating this problem.
Anonymous 2
Much appreciated.
Re: Home alone:
I was also uneasy about staying home, especially at night — and I was also afraid if I was the last one up and had to turn off the lights. I never verbalized it to my parents but, looking back, it is one of the first instances of increased anxiety, which now requires medication for plane flights.
Interesting point, thank you.
Regardless of where this 12-year-old’s fears are headed, talking about them will help her — so this exchange is a good reminder for parents to say, “I’m glad you told me this,” or, “It took courage for you to admit that, thank you,” when a child admits to a negative feeling. When appropriate (as in, when it won’t sound like one-upping), it can also help to share any similar fears you’ve faced.

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AWARENESS UPDATE: DISABILITIES AND THE WORKPLACE

Some bad news, I'm afraid--in general, a study finds that persons with disabilities are paid less.  Read more:

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Workers with disabilities earn 37 percent less than their typically-developing peers, on average, even in cases where they have similar levels of education, a new analysis finds.

In 2011, people with disabilities took in 63 cents for every dollar paid to workers without disabilities.

For those with a high school diploma, the wage gap amounted to $6,500 per year. The disparity rose to nearly $13,000 for those with a bachelor’s degree and over $20,000 for individuals with master’s or other more advanced degrees.

The findings come from an analysis of data from the U.S. Census that was conducted by the American Institutes for Research, a nonpartisan research firm.

“Although non-discriminatory compensation is protected through the Civil Rights, Americans with Disabilities and Rehabilitation Acts, our results show that earnings inequalities are gaping,” said Michelle Yin, an author of the report.

Due to the lower pay for workers with disabilities, the report finds that states and the federal government are losing out on as much as $31.5 billion in potential tax revenue.

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FOR ALL PARENTS, INCLUDING MOEBIUS MOMS AND DADS: YOUR CHILD, THE PERFECTIONIST?

What to do if your child is the type who, when he or she does not do it perfectly the first time, he gives up or she storms off in frustration?  A Washington Post columnist has some ideas.  Read on:

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Question: My 7-year-old daughter is bright enough that many things come pretty easily for her, but when they don’t, she gets frustrated and quits. She won’t practice or work at anything — even fun stuff like riding a bike — because she’s not perfect the first time, and to her that’s unacceptable. If she’s encouraged to keep trying, she’ll eventually storm off in frustration and continue to beat herself up over not being able to do it.

We’ve tried modeling acceptance of imperfection in our own behavior, we’ve tried praising effort instead of achievement, reminding her of past successes (“You couldn’t do a flip on the monkey bars the first 20 times, remember? And now it’s your favorite thing!”).

Hugs, nurturing, reminders that we’ll always love her, etc. only seem to make her even angrier, but backing off doesn’t help her feel better, either. This fear of even the smallest failure has her hamstrung in a lot of areas, and at school it often causes her anxiety and embarrassment when she can’t control her frustration. How can we help her learn to keep plugging away and get her over the hurdle?

Answer: Ah, perfectionism. Not just the paralyzing domain of children, I have also seen adults suffer terribly from perfectionism. So, let’s decode perfectionism a little.

Whether in an adult or a 7-year-old girl, perfectionism is a very useful feeling for humans. In trying to make everything “just right” or quitting when the going gets tough, the human brain avoids a great deal of uncomfortable feelings.
Perfectionism is the brain’s way of defending itself against feeling out of control and, in essence, vulnerable.
Vulnerability is tough for brains. That’s because our brain is mostly made up of areas that want to protect us, both physically and emotionally. Back in the day, when we were out hunting on the plains, there was no time to relax. It was eat or be eaten, and the world was truly a dangerous place. The brain was constantly scanning the environment, assessing for danger and yes, failure.
Fast-forward several thousand years, and we still have these brains.
This part of our brain still overreacts to real and perceived dangers (and most dangers in our world now, lucky for us, are just perceived).
Your daughter cannot ride a bike just right the first time? The brain yells, “THESE FEELINGS ARE NOT GOOD! STOP THEM IMMEDIATELY!” And true to form, your daughter shuts them down. The more we push or cheerlead or distract, the more her brain reads this as, “I know what you are trying to do here. You are trying to get me to feel all of my feelings! Forget it!” And she digs in. Her brain is protecting her.
Your letter demonstrates that you are clearly caring parents and that the many strategies you are trying are not working for you. That’s because, simply, we can’t skip the hard parts of feeling vulnerable. At least, we can’t skip them and grow into our fullest potential.
Your daughter is scared of feeling out of control, so you must safely and slowly allow her to feel out of control.
No more praising, cheerleading, reminding her of past successes.
If you pause and reflect on this, praising, cheerleading and all the other strategies are all pointing toward one thing: outcomes. Do the monkey bars, get on the bike, finish the homework, be happy.
Shift focus to letting her feel uncomfortable and worried and sad and out of control.
Show your daughter that she can make it through these feelings and that you are not going to go anywhere. You are going to be there, 100 percent, to listen and hug — not to change or lessen or mitigate the feelings. In doing so, you are going to make room for discomfort. Why? Because, as developmental psychologist Gordon Neufeld says, the more room you give a feeling, the less space it takes up.
When your daughter is ready, a powerful thing to try is to mirror your daughter’s feelings.
“Yes, riding a bike can be scary and frustrating. You could fall off!”
“Yes, doing homework might mean getting some of these problems wrong.”
“It makes you feel pretty bad to feel worried at school, huh?”
I say “when your daughter is ready” because chances are good that she is not going to want to hear this for a long time. I am going to guess that for now, she is going to view any input from you as some sort of cheerleading or something else coercive, so remain watchful and attuned to what is happening under the anxiety. This will lead you to knowing when and how to mirror.
Finally, cultivating the idea of “it doesn’t really matter” will help you. Start thinking to yourself, “It doesn’t really matter if my daughter ever learns to ride a bike, I love her anyway.” “It doesn’t really matter if she does this math homework, I love her anyway.” “It doesn’t really matter if she storms off 30 times today, I love her anyway.” Allow this love and acceptance to shine through in your daily interactions. Let her young brain know that no matter what, she doesn’t need to prove anything to you. You already love her unconditionally. And then, she’ll realize she doesn’t need to prove anything to herself, either.
Finally, remember that this path is on her schedule, not yours. You can do everything “right” and by the book, but your daughter’s growth will happen when she is ready. This requires you to remain steady and confident. She can come out of this with earned resilience and the confidence to know that hard feelings can be experienced, that there is nothing to be scared of and that she can handle scary feelings.

Send questions about parenting to meghan@positivelyparenting.com. 

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MOEBIUS SYNDROME IN THE NEWS

This actually appeared a few weeks ago, but in case you did not see it, here it is--once again it has to do with young Moebius hero Jack Marshall, from the UK:

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Against all the odds a teenager suffering from a rareneurological disorder won the fundraising award at the SuperKids Awards ceremony.

It was an award sponsored by the Doncaster Free Press and presented by DFP display manager Eve Hanson.

The 16-year-old winner of the honour was Jack Marshall, who suffers from Moebius Syndrome.

The condition means Jack is unable to walk unassisted, has difficulty with his hearing and his sight and is unable to smile.

Despite this he has completed the Great North Run and the Great Manchester Junior runs on several occasions. The determined teenager has not let anything stand in his way and has also climbed Yorkshire’s Three Peaks – Pen-y-Ghent, Whernside and Ingleborough – a combined height of 2,153 metres.

He has also climbed the highest mountain in Wales, Snowdon, at 1,085 metres, to raise thousands of pounds for blood cancer charityLeukaemia and Lymphoma Research.

This year the 16-year-old attended the Stephen Sutton Teen Hero Award at Wembley, created in memory of 19-year-old Stephen Sutton who raised £5 million for charity before his death from cancer in May.

After those awards Jack said: “I do what I can to help other people. Yes I have Moebius Syndrome but that is not a terminal illness like blood cancer can often be.

“I am very proud that my name is linked with an inspirational person like Stephen Sutton and I shall aspire to honour his memory.”

Jack’s mum Linda is very proud of her son and proud of the fact that he was given such a prestigious honour and also received recognition in the SuperKids Awards.

She said: “Moebius Syndrome is known as life without a smile, but Jack smiles from inside in a big way.

“I am proud of him every single day of his life – the way he lives his life, the way in which, despite his disability, he devotes himself to helping others. He is an incredible young man.”

Jack began fundraising in 2006 and each October when his mum asks if that is it he says: “Of course it is,” before pausing and adding: “That is until next year,” before roaring with laughter.

His proud mum added: “He is just so humble about this.”

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