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Wednesday, April 13, 2022

Gilbert Gottfried, Myotonic Dystrophy and the Unplanned Homeschooler

Gilbert Gottfried, well-known comedian and actor with the unmistakable voice, died from complications of myotonic dystrophy type 2. According to his publicist, his death was caused by ventricular tachycardia, an arrhythmia associated with myotonic dystrophy. This rare disease, which affects only about 1 in 10,000 people, is a form of muscular dystrophy which, according to the Myotonic Dystrophy Foundation causes a host of "varied and complex symptoms, including skeletal muscle problems, excessive daytime sleepiness, early cataracts and heart, breathing, digestive, hormonal, speech, swallowing, diabetic, immune, vision, and cognitive difficulties." 

This week may be the first time you've heard of myotonic dystrophy. To my knowledge, no other celebrity or well-known person has been diagnosed with the disease. Because it is so rare, you may never even meet anyone who has it. But I know it well, because my husband and at least two of our three kids are afflicted. 

I first learned about myotonic dystrophy a few years ago, when my husband's brother called to let him know he had been diagnosed. My husband had been showing symptoms for some time, too, but we didn't know what was going on. Both of my husband's parents died relatively young, but we're pretty sure that the disease came from his mother, who had mobility issues and a lot of other health problems in the decade before she passed. 

My kids tested positive

Around this same time my older daughter was going through a barrage of medical tests, because of pain, fatigue, hypermobility and a myriad of other symptoms she had been dealing with practically since birth. She had already been diagnosed with Ehlers Danlos syndrome, a connective tissue disorder, but that didn't explain all her symptoms, so we were traveling the state visiting specialists in genetics, neurology, rheumatology, cardiology and more. I mentioned to the geneticist that her uncle had tested positive for myotonic dystrophy, so they ran another test looking specifically for the mutation. Just before she turned 18, my daughter was officially diagnosed with the same disease.

The geneticist suggested we test my son, even though he did not have all the same symptoms as his twin sister. We knew that because myotonic dystrophy is caused by what is called an autosomal dominant mutation, there was a 50 percent chance of him having the disease, too, but we were hopeful. A week later his test came back positive, too.

My youngest has not yet been tested, as the geneticist insists it is better to wait until she is close to 18 and can decide for herself if she wants to know. But she and her brother were both also diagnosed with Ehlers Danlos syndrome, so it is impossible to tell if her pain and fatigue are due to that or if she is also showing early signs of myotonic dystrophy. She, too, has a 50 percent chance of having myotonic dystrophy so it is just a matter of waiting to see how the test turns out. 

There is no treatment for this disease. There is no cure. It is a chronic disease that slowly robs you of your mobility and puts you at high risk for many other complications, some of which can be life threatening and many of which contribute to daily pain. There is some new hope in the form of CRISPR gene editing trials which have shown some promise with similar disease, at least in mice. 

Homeschooling with myotonic dystrophy

My twins are 20 now, and are finishing their first year as full-time college students. They've been living with their diagnoses for a couple of years. It hasn't been easy. Myotonic dystrophy wuld be tricky enough on its own, but combining a muscular disorder with a hypermobile connective tissue disorder in the form of Ehlers Danlos syndrome is just awful. Faulty muscles and faulty joints combine to cause tremendous pain and require enormous energy. 

Living with this pair of rare diseases means looking at life differently. As we wrapped up the twins' final year of high school, we worked closely with the Disability Services office on the university campus to make sure they were able to succeed in their concurrent classes. We spent a considerable amount of time considering potential majors and what sort of careers they could maintain long term, even if they are in a wheelchair full time well before retirement age. 

My twins can't party like average college students. They've been warned not to drink alcohol or even consume energy drinks because elevated liver enzymes can be a problem with myotonic dystophy. They've had to be extra careful during the pandemic because their disease can cause respiratory and cardiac complications. And they have to work extra hard to maintain good grades because they are on scholarships, they both intend to pursue graduate school and if they blow their academic standing they would have an extremely hard time finding work they could physically do while trying to finish school.

I may not be homeschooling my twins anymore, but supporting them through college is still important. They decided to stay home and attend the local state university because the campus is smaller and easier to navigate, and because they would not have to live in the dorms. Parking is still an issue sometimes, though, especially when the weather is bad, and their schedules don't always match up so I spend a lot of time helping one or both of them get to class. 

Looking to the future

The cardiac complication that Gilbert Gottfried died from can often be addressed with a pacemaker. It is recommended that people with mytonic dystrophy get evaluated regularly for complications with their hearts. They also have to stay on top of other health issues. Young adults can be resistant to making their own appointments and taking care of their medical needs, but the only way to live a full life with myotonic dystrophy is to be very proactive in your care. I am working to encourage this with my twins, and even with their dad. 

I am scared of what the future holds for my kids, but I am oddly encouraged by the life of Gilbert Gottfried. His career evolved as he got older, and presumably lost a lot of his strength and mobility. He pivoted to more voice work and less stand up, but he lived his whole life as an entertainer, doing what he loved in one way or another. 

I am still doing everything I can to help all three of my kids open doors to opportunities to pursue what they love. Their paths may be limited due to their disabilities, but there are always ways to find what you want and need in life if you stay open to the possibilities.  

Wednesday, September 2, 2020

How is virtual school going?

 Hey there! I see you, parents of newly virtual schooling kids. I know a whole lot of you, maybe most of you, would have never chosen this option for your children's education if not for the pandemic. Maybe you are doing virtual school because that is all that is offered right now in your district, or maybe because your family has one or more high risk members you want to protect. Perhaps you are out of work, or working from home, and you just wanted to give this whole school-at-home thing a try. Or maybe you've been toying with the idea of homeschooling for a while, and this seemed like a good way to see if it might be a fit for you and your kids without committing to doing everything on your own.

Whatever the reason you've chosen virtual school, I hope you and your kids have a fantastic school year!

Our family has never done virtual school, although believe me, I was tempted by the idea of it when we first decided to homeschool. One of the main reasons I decided to do traditional homeschooling instead of virtual public school was that my older two kids were still quite young. I didn't think teaching first grade to my twins would be so tough, and at that time I really only expected to homeschool for a couple of years, until my youngest could start pre-K. 

Another factor was our slow and unreliable internet at that time. Rural areas and small towns really are so far behind when it comes to internet service, and that is a huge hurdle, I think, to providing a quality virtual school experience to students across the board. 

Anyway, we made the decision to homeschool instead, so I have never actually had the experience of virtual school. I have a good friend who is an experienced virtual school teacher, and know many families who have been happily virtual schooling for years, so I know it can work well. I've also known families who had poor experiences with different virtual school platforms, so I realize it doesn't always work well for every student.

If you have chosen virtual school for your kids, I really do hope that you have a great experience. If it is not what you had hoped, I do have a couple of suggestions, having worked with hundreds of homeschooling and virtual schooling families over the years. 


It is extremely important that you communicate regularly with your virtual instructors, and that you communicate well. Be specific about issues you are having, and don't wait until the last minte to reach out. If you are not able to form a cooperative relationship with your child's instructor, and you feel that your child's education is at risk, please reach out to someone higher up the chain. You may be able to switch instructors, or even enroll in a different virtual school or switch to homeschooling if problems cannot be resolved.

Define your goals

It is important, when deciding which path to take, that you carefully define your goals. I am, obviously, very much in favor of homeschooling. But it is not the right path for every family. If your goal is to get back into the neighborhood school classroom as soon as possible, particularly if your child will be in high school in the coming year, homeschooling may actually throw them behind, because many high schools refuse to accept homeschool credits from students who are transferring.

If your goal is to preserve your child's eligibility to participate in their local school's extracurricular activities, you may want to carefully look at whether switching to a different virtual school would take away those opportunities. Be aware, though, that there are often homeschool sports, music and other extracurricular options available if you should decide to leave the virtual school, and in some states, homeschooled kids must still be allowed to participate in extracurriculars at their local public school. 

Your goal may be to simply provide the best education possible for your child, regardless of the format. In this case, homeschooling may be an awesome option for your family if you find that virtual school is too limited or too demanding of screen time, or just isn't a good fit for whatever reason.

Virtual school isn't homeschool

Be aware that in most cases, virtual public school is not considered homeschool, even though it is done in the same place and may use many of the same resources. This is true regardless of whether you are doing virtual school through your local school district or through an online public charter school. Both virtual public school and homeschool are valid educational alternatives, but families have very different rights and responsibilities depending on which they choose.

For those who are embarking on your first semester of virtual school, I wish you the best. I hope your children have skilled teachers who are able to adapt to the format easily, and that they are able to enjoy each and every one of their classes. 

If that is not the case, and you do find yourself considering homeschooling, either for the year or forever, please reach out to experienced homeschoolers online or in your community for support. And check out my book, The Unplanned Homeschooler: My Disorganized Path to Homeschooling Success, available free for a limited time on Amazon. You do not have to take on this venture alone.   

Tuesday, September 1, 2020

Get my book, FREE for a limited time!

Raise your hand if you didn't exactly plan to be doing school at home.

You might guess from the title of my blog, and my first book, my journey into homeschooling wasn't a planned excursion, either. No, my family wasn't pushed out of the classroom by a global pandemic, but we did end up homeschooling largely due to circumstances beyond our control. From the overcrowded local elementary schools and the abysmal lunchtime policies to the fact that public school just wasn't meeting my children's educational needs, we found ourselves embarking into strange territory.

You are not alone. And right now, for a very limited time, you can get my book, The Unplanned Homeschooler: My Disorganized Path to Homeschooling Success for free! Read about my trials, my errors, the tears, the laughter, and some of the amazing learning adventures that convinced me homeschooling was the right choice for my kids. 

I won't say that because we did it, you can too. But if you are thinking about homeschooling, and you're maybe a little scared or nervous about wading in, get my book now and see what those first years were like for us. Click here to get your copy today!

Monday, August 31, 2020

Raising up resilience

It has been a while since I've written anything for my blog. The stories I wanted to write didn't seem like all mine to tell. Such is often the case when you are writing about the lives and experiences of your children, especially if your childen have disabilities. Although the things my kids were going through affected me as well, it still didn't feel right to talk about publicly unless and until they seemed ready to share. But like many homeschooling moms, I've discovered that in spite of challenges, I have been raising amazing, resilient young people and they are excited to pursue their goals in whatever manner they can.

I have three children. My twins, 18, and their little sister, who will be 13 this month. Yes, I am about to be a mom of three teens! This is an exciting time in our lives. The twins are seniors this year. They started concurrent enrollment classes at the local university last semester, and are taking more classes there this fall as we concentrate on applying for admission and scholarships for their freshman year. My son is leaning toward a career in the medical field, and my daughter is interested in finding her niche in the entertainment industry. My youngest is entering middle school and has interests as varied as any you might imagine. 

Dealing with the pandemic

This year has not been too difficult for us, as far as dealing with the pandemic is concerned. Homeschooling had already prepared us well for learning successfully at home, and although we all missed some of the social aspects of our routine, at least the educational components of our lives weren't thrown suddenly into chaos. 

Actually, taking the extra precautions we've needed to take, primarily due to my younger daughter's heart condition, has given us something of a season of rest. You see, before Covid-19 arrived on the scene, we were exceedingly busy. We had appointments scheduled multiple days each week, many of which were more than an hour away because we live in a small town. Some appointments took us hours away from home, and all had to be scheduled around the twins' college classes. 

Facing tough diagnoses

The last couple of years were spent in what seemed like a rolling snowball of of doctors and tests. My kids, all three of them, were preemies and had been dealing with mysterious issues since they were born. The twins qualified for speech, occupational and physical therapy in preschool, but we didn't know the underlying reason for their challenges. I've spent their whole lives looking for answers, but it wasn't until they were in their teens that things started to come together. Without going too much into their diagnoses, I will simply say after seeing two geneticists and multiple other specialists, we finally had definitive answers, and they were discouraging. 

It is not easy to receive life-altering diagnoses, not as the patient and not as their parent. I think having an imposed break in all the appointments, due to the pandemic, gave us all time to catch our breath. The kids' medical conditions aren't going to go away, and whatever poking and prodding and physical therapy and other work needs to be done will still be waiting when we're ready to resume. But for now, it is good to have time to focus on other things, like their college applications and dreams for the future.

Still chasing their dreams

Homeschooling has helped me to raise overcomers. My older daughter has spent a lot of time researching different jobs in the film industry, and various paths to the type of career she wants. She's spent time thinking about the limitations she might face, whether due to her mobility or tolerance of heat or cold, for instance. The flexibility she has experienced as a homeschooler has given her the ability to envision different ways to accomplish her goals.

My son's diagnoses seemed to light a fire under him. I'd done my best to open as many doors as possible throughout his education, making sure that he learned the basics and had plenty of opportunities to study subjects of interest, but he'd been pretty committed to "Undeclared" as his major until this year. Recently he has started to take a hard look at the type of career he really wants, and what sort of labor he will be able to physically do over the long haul, and he's working hard to make a plan and go for it.

My little one, who was born with a heart defect and has dealt with overcoming disability her entire life, is watching her older siblings as they deal with the challenges they face now and those that will come. She won't be tested for the same disorder until she is older and can consent on her own. Part of me just wants to know now, but I understand that it needs to be her decision. Whatever happens, she's one of the most resilient people I have ever known, and I have no doubt she will find her way.

Homeschooling made a difference

I'm not sure if my kids would have been as ready to face their challenges if I had left them in public school. By the time they finished kindergarten, the twins were already dealing with setbacks. My daughter felt like a failure on the playground, and was going hungry from the limited time she had to eat lunch. My son was drowning in a classroom that was so mismatched to his learning style he seemed doomed to fall through the cracks. Homeschooling allowed them to learn in ways that suited them, and to succeed in ways that they might never have discovered in an overcrowded school.

If you are reading this, you are probably already considering homeschooling. I encourage you to give it some serious thought, especially if you are dealing with a medically complex child. Every child has dreams, even if some of them may come with limitations. Homeschooling may be just the thing to help your child build a legacy of success and gain the courage to explore all the possibilities that await them.

Monday, September 10, 2018

A raw, honest glimpse into the journey through years of infertility - 'Hail Mary for Peanut' review

Infertility is a condition like no other I know. There is the pain, the longing, the anguish of yearning for a child and feeling like a failure, all the while dealing with the intrusive nature of treatment options and the well-meaning but often hurtful opinions of family and friends. And of course, the unending feeling of standing in an unmoving line while others inexplicably get their turns. Will your turn ever come?

Yes, I've been there. For nearly a decade before my twins were born, and then several more years before unexpectedly being blessed with our youngest. I know this journey, all too well. That's why, when I saw a fellow homeschooling mom mention her new book, Hail Mary for Peanut, on Facebook, I knew I needed to review it. 

I expected an interesting read, with familiar elements and hopefully, a happy ending. What I discovered was so much more. 

Heather Nelson's book, part memoir and part advice, is so raw and honest, it took me by surprise. She didn't just talk about the yearning, she dove deep into the feelings of sadness, anger, inadequacy and loss. She brought to life the fears and the fatigue, the hopes and the frustrations of a years-long battle with infertillity and the effects it can have on a woman and on a marriage. 

It's been more than 17 years now since I finally got the positive result on the blood test that assured me I was, indeed, pregnant at last with my twins. But reading this book took me back, all the way to the years when I prayed desperately day after day for God to give me a baby, and felt so alone.

I wish I'd had a book like this when I was going through it all. I knew other women who'd dealt with infertility. My own mother suffered through the better part of a decade before I was born. But, I can't tell you how wonderful it would have been to have been able to curl up in my bed and read these words of sisterhood from a woman who wasn't afraid to tell it all. 

If you know any woman who is going through infertility, get her this book! It may be the lifeline she needs, just to know that she is truly not alone in any of what she is feeling, and that there is hope, no matter where her journey leads. 

Wednesday, August 1, 2018

Learning Tangent Homeschool Magazine named one of education's top 15 publications worldwide!

Four years ago, I submitted a pitch to write for a relatively new magazine in the homeschool market. It was an inclusive magazine, open to homeschoolers of all types, and completely free of advertising  connected to the Common Core. I'd read some of the back issues, and was excited to join the team of writers, but little did I know how far Learning Tangent Homeschool Magazine would come in such a short time.

Today, Learning Tangent was named one of the top 15 education magazines in the world. Not just homeschool magazines, mind you. The top 15 of all education magazines worldwide, thousands of them!

I'm so proud to have spent the last four years with Learning Tangent Homeschool Magazine! It feels great to be part of such a great group of writers, and of course, kudos to our editor and the founder of the magazine, the talented Gail Nelson. She's given us the opportunity to reach out to so many readers and make a difference in the lives of homeschoolers around the world. 

Tuesday, July 31, 2018

Don't overload yourself this year

In the weeks leading up to a new school year, many homeschooling parents become anxious about how much their kids will accomplish. Will their little ones learn enough to stay on track with their peers? Will their teens earn enough credits to graduate as planned?

It's so easy to get overwhelmed, not just in the planning of it all, but in the day to day execution of the school year itself. How can you keep from getting buried under a stressful mountain of schoolwork and administration this year?

Believe me, this is something you'll want to avoid, not just this year, but in the years to come, as subjects get tougher and the lessons get longer. I've seen what homeschool burnout can do to a mom, I've even felt it a time or two, and it's no good for you or any of your family.