What I Think "Frozen" Is Really About

My sister in law was just telling me the other day that her daughter, my niece, had also read Heaven is for Real and that she was intrigued by my response to it - that I didn't give it a stellar review, but I questioned the things it didn't address.  She said her daughter was starting to realize that, being the parent of children with special needs, I see many things in the world differently.

I didn't realize just how much that is the case, either.  I see cases of people with differences being misunderstood, undervalued, treated cruelly, and abused in so many more books and movies than I ever did before.  And I think everyone - well, most everyone - while they know that it's wrong and unjust, they don't feel the unfairness the way I do.  Because while most everyone can imagine people being mistreated, most of them aren't imagining it happening to their own babies.

I'm reading The Giver by Lois Lowry right now.  It's about a futuristic society where people live simple lives where they have no control or choices, but they also have no pain or sadness or loneliness.  There are no people with disabilities anywhere.  Everyone is the same.

The focus is on how the people have no memories of bad things, but no memory of good things, either. 

I just had to delete what I'd written here because I don't want to spoil the story for anyone who hasn't read it, but basically, this society is living by some very ignorant and ancient ideals, for the sake of sparing people pain.

(This is youth fiction.  It's recommended to my 5th grader, who is currently reading Tales of a 6th Grade Muppet.  Seems like a bit of a leap, to me, but I might have her try it when I'm done.)

Another case where I see a story of a disability is the movie Frozen.  I'm not going to worry about spoilers for that, it's been out for months now and if you haven't seen it twice, you should have.  Because it's the best Disney film ever made.  That's only my opinion.  But there you have it.

To most people, Frozen is about two sisters who grow up largely separated and lonely but whose love for each other saves the day, in the end.

To me, Frozen is about a girl with a gift no one else has or understands.  She hasn't been taught how to live with this gift and she can't control it and she hides it.  When it inevitably becomes public, it scares the people, and they shrink away from her in horror and begin to plan to destroy her.

I see a movie about a girl with a disability.

It starts when she's a little girl; she can't quite control her gift of freezing things, and her parents, in order to protect her and her sister, encourage her to hide it.  Mistake number one.  Like a lot of parents of unique and special children, they had no idea what to do and they were afraid of how the public would treat her, so they tucked their daughter away where no one would see her specialness.  Thus, she grew up having no idea how to live with it - how to control it.  She should have received therapy as a child.  A therapist, who could help her learn to express it in a safe way and live her life normally.  Because once she gets away from home, she is relieved to finally be able to LET IT GO...

Her sister goes on a mission to save her.  It's incredibly heartwarming, and finally, finally, Disney has made a movie where the girl doesn't have to end up with the prince to have a happily ever after.

This movie is not only thrilling and funny, it's packed with terrific messages for kids.  Here's just a couple of them:

Love at first sight is exciting, but needs to be given time to see if it is real.

People who are a little "different" need to be loved and included, not feared and shunned.

The ABCs of Fragile X

Happy Fragile X Awareness Day!

A little while ago, for no particular reason, I wondered whether I could come up with Fragile X terms, symptoms, and concepts for each of the letters of the alphabet.  I started it and slowly came up with a good list, but there were still a few letters that stumped me, so I asked the Fragile X Facebook group to help.  That wonderful group of people came through, and together we compiled this terrific list!

Learning about Fragile X Syndrome is as easy as ABC!

A is for ...

Anxiety is a hallmark symptom of Fragile X Syndrome, whether you have the full mutation or the premutation.  Anxiety, unfortunately, often commands and controls FXers lives.

Aggression is another very common symptom that can stem from anxiety and overstimulation.  When children with Fragile X don't know what to do with the intense world that seems to be coming at them from all angles, they may defend themselves in a way that appears aggressive to others.  They don't mean to be.  They are just freaking out.

Autism is a dual diagnosis that at least 1/3 of people with Fragile X also have.  There are currently very few known causes of autism, and Fragile X is the most common genetic one.


B is for...

Dr. Berry-Kravis is a name you will start hearing, once you start following the Fragile X Facebook and email groups and attending conferences and webinars and reading articles about research.  She is a pediatric neurologist at Rush University in their Fragile X Clinic and one of a few dedicated Fragile X doctors, researchers, and heroes.

Boys are most affected by Fragile X.  Girls can have it too, but they usually aren't as affected.  Often girls can lead a mostly normal life, even with a full mutation.

Brushing is a calming method many FXers respond to positively.  An occupational therapist can show you the correct technique.


C is for...

80% of boys with Fragile X have some Cognitive disability.  It's unfortunately the most common and most debilitating characteristic of Fragile X.

We live for and go through a lot of Chewys in our house.  Chewys are little pieces of rubber, often shaped like letters, especially made for kids with autism and other sensory disorders to chew on. They help kids get the input they need and stay calm in tense situations.  You can buy them from pretty much any store that carries autism products.  I get mine at the Autism Shop.

If you are a mother of a child who has been diagnosed with Fragile X, you are a Carrier (also referred to as a premutation).  Fragile X is a gene mutation on the X chromosome, and carriers pass it on to their children.

If you are a carrier and you are the mother, you have a 50% chance of passing it on to each of your children.  The gene may or may not change into the "full mutation," causing Fragile X Syndrome.  Even if she passes on the X with the gene mutation, it may not change.  Her children could also be carriers.

If you are the father, you will not pass the Fragile X gene mutation on to any of your sons, because you don't give them the X chromosome.  You will, however, give it to all your daughters.  When the gene passes from a father to a daughter, however, it does not change - the father's daughters will be Carriers of the gene.

D is for...

An early Diagnosis is key to getting the proper treatment and therapy started.  Many kids with Fragile X can grow into happy, productive, social adults if they get diagnosed early and receive therapy.

Developmental Delay is generally the first sign of Fragile X in babies.  Babies who are late with their developmental milestones should be tested for Fragile X.


E is for....

Emory University in Atlanta, Georgia is another location where lots of Fragile X research is performed.

As is similar with kids with Autism and other behavioral and sensory disorders, kids with Fragile X often have trouble making and maintaining Eye Contact. While in children with autism the lack of eye contact is due to the child not understanding that eye contact is a normal part of communication, with a Fragile X child, the lack of eye contact is more likely due to anxiety.  Don't force it.

People with Fragile X are often extremely Empathetic.  They hurt for their friends' and families' pain.  They are very sensitive to the emotions of others.


F is for...

Fragile X is a Family of disorders.  It doesn't affect the child, and stop there.  It snakes its way through a family tree, leaving its mark silently, here and there, until a family member is finaly diagnosed with it.  Family members can be diagnosed with Fragile X-associated Tremor Ataxia Syndrome, Fragile X-associated Primary Ovarian Insufficiency, or Fragile X Syndrome.

To have the Full Mutation means to have over 200 repeats of the CCG gene sequence.


G is for...

Understanding how Fragile X works requires a very basic grasp of Genetics.  Females have two X chromosomes, males have one X and one Y.  The Fragile X mutation is on the X chromosome.  Since a female has two Xes, she has a 50/50 chance of passing on the X with the gene mutation.  Since a male has just one X, he will pass it on to all his daughters and none of his sons.

A lot of parents of children with Fragile X (and autism) find that putting their children on a Gluten free and dairy free diet can help with many of the symptoms of Fragile X.  Sometimes Gluten can wreck havoc on a digestive system, and eliminating it from the diet can fix problems and help avoid or reduce medication needs.


H is for....

Another name you will hear frequently in discussions about Fragile X research and knowledge is Hagerman - namely, Paul and Randi Hagerman.  They are a husband and wife team, both doctors and researchers who are based at the MIND Institute who have dedicated their lives to the study of Fragile X and its affect on individuals and families.

The ability to Hyperextend the joints is another hallmark symptom of Fragile X.  Many parents will notice that their children with Fragile X are insanely flexible.  For example, AJ likes to sit and work on his iPad with his foot tucked underneath his armpit.


I is for...

Every two years the National Fragile X Foundation, along with FRAXA and a local Fragile X group hold an International Fragile X Conference, attended by medical professionals, researchers, teachers and other school personnel, therapists, and parents of children with Fragile X.  For four days, information and news about Fragile X is shared, new friendships are sparked, and unforgettable experiences abound.  Every parent of a child with Fragile X should attend a conference at least once, if they can.

One piece of technology that has changed the lives of people with almost all disabilities for the better is the iPad.  I don't think we have even discovered yet how much the iPad can benefit and simplify our lives.  Literally hundreds of thousands of apps have been developed to help people with autism and Fragile X live fruitful and happy lives.

No list of common Fragile X terms would be complete without including the acronym IEP.  The Individualized Education Plan spells out exactly what a child with special needs will be expected to learn in a specified period of time (generally one year).  It's important to make sure that your IEP includes specific measurements of learning and that your child is getting all the assistance he/she has a right to, under the law.


J is for...

Kids with Fragile X may have their problems and those problems may seem unpleasant, but there's no denying the utter Joy they can both feel and inspire.  Despite their challenges, they are generally happy, Joyful children with infectious giggles.

One way for kids with Fragile X to organize their systems and get their excess energy out is by Jumping.  A lot of the time, you'll find these kids to be very, very active.


K is for....

Getting a diagnosis like Fragile X throws a lot your way, all at once.  There's the immediate symptoms to get under control.  There's the therapy that must be started, right now, because early intervention is key.  There's educating yourself, your friends and family, and often the doctors and therapists about Fragile X and its associated disorders that may effect your whole family.  But above all else, it is important for you to Keep Calm.  Like the popular meme says to.


L is for...

While children with Fragile X definitely Learn differently, they definitely CAN learn.  My boys can read words by sight, but cannot sound them out by letter.  At eight years old Zack can read over 100 words by sight.  His IEP states he will learn 200 by this December.  AJ can read probably 500 words.  I'm constantly amazed at what he reads to me.  In some cases kids with Fragile X (and autism) can learn to count more easily by using a method called TouchMath.  It involves putting points on each number that can be counted.


M is for...

Most people with Fragile X are on some kind of Medication.  There is no cure for Fragile X but there are a wide variety of medications on the market that can help alleviate the symptoms and increase the person with Fragile X's quality of life.  And new mediations that show even more promise are being developed and tested all the time.

Someone with a diagnosis of Mosaic Fragile X has been found to have different numbers of CCG repeats in different cells in their bodies.  Some cells may carry over 200 repeats or the Full Mutation, while others carry between 50-200, or the Premutation.

People with children with Fragile X know all too well what happens when our kids have Meltdowns.  We may spend our days trying to organize and plan every aspect of our lives to keep meltdowns from happening, but we aren't as in control as we think we are.  Just when you think you've done everything right and nothing can go wrong, BAM!  There's your kid, laying on the floor at Target, screaming bloody murder because you stopped him from shredding the box of Honeycomb before you even paid for it.


N is for...

The National Fragile X Foundation - where to find out all about Fragile X. 


O is for...

A very common type of treatment for Fragile X is Occupational therapy.  Children with Fragile X often don't play with toys appropriately; that is, in such a way as to learn and gain developmental skills by playing with those toys.  Occupational therapy can help show those children how to play to most effectively gain skills.  OT also helps children learn everyday activities such as eating with utensils, brushing their teeth, and tying shoes.

A child with Fragile X who appears wild or aggressive or upset, or just covering his ears, is often suffering from Overstimulation.  The world around them can seem like a series or harsh attacks to their senses, and they struggle to cope but sometimes they can't take it all in and they become overstimulated.

P is for....

Most kids with FX seem to work really well with Picture Schedules.  Whether or not they become verbal, they are visual learners who will respond positively to a simple schedule posted somewhere in the house, with a few picture cards representing the activities of their day.

Female carriers are at risk for Fragile X Primary Ovarian Insufficiency, or FXPOI.  FXPOI is characterized by infertility and early menopause.  Find out more information about FXPOI here.

Q is for...

Questions.  A Fragile X diagnosis leads to years of questions both posed by, and posed to, the family with Fragile X.  Where did it come from?  What does it mean?  How is it going to affect us?  Most of your questions can be answered by a genetic counselor, a doctor, or experienced parents of children with Fragile X.


R is for....

Rush University is another location where an established Fragile X clinic sees hundreds of patients with Fragile X.  It is also one of several locations where exciting research studies are being performed.

A person's Fragile X status is determined by the number of Repeats of genetic code CCG on the X chromosome.  What is your repeat number?  How many repeats do you have?  While the number of repeats doesn't indicate the severity of the symptoms of Fragile X (in other words, higher repeats do not necessarily mean more severe symptoms), the number of repeats in someone with the premutation, or a carrier, can give some indication of the chances of their having children with the full mutation, and of their developing one of the Fragile X-associated disorders.


S is for....

Sensory Processing issues are often a huge part of Fragile X.  Sensory processing is defined as "the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or 'sensory integration.'"  (Definition taken from the SPD Foundation site.)  Often, if someone with Fragile X is expressing undesirable or mysterious behaviors, they are a direct indication of their sensory process being disorganized or inefficient.  Finding out exactly how their sensory process is working and then developing a "sensory diet" can help.


T is for....

Another Fragile X related condition is Fragile X-associated Tremor Ataxia Syndrome.  FXTAS causes balance, tremor, and memory problems in most commonly male, but occasionally female carriers of the Fragile X gene.  Find out more information about FXTAS here.


U is for....

It's estimated that Fragile X Syndrome is greatly Underdiagonosed among the autism community.  Current estimates show that 1 in 10 children diagnosed with autism has Fragile X syndrome, but experts suspect that number could be much higher if all children with autism were tested for Fragile X.

The Mecca of all things Fragile X Syndrome is at the U of CA Davis - the MIND Institute.  Another amazing place to visit, if you ever get the chance.


V is for....

One of the first things you start to fret over when your child is diagnosed with Fragile X is whether or not he will be Verbal.  A lot of kids with Fragile X start talking between ages 3 and 5, some not until later, but even if they never manage to utter a word, they can learn to communicate well with a picture schedule. 


W is for....

Being in Water is what helps my sons with sensory processing, more than anything else.  We take them swimming as much as possible.  They benefit from the resistance water provides, as well as just from cooling down.  The warmth and jets in a hot tub also calm my boys more than any medication ever has.

A Weighted blanket or vest can be a great help to a child with Fragile X who has sensory problems.  Feeling the extra weight helps them ground themselves and feel less impulsive.

X is for....

That pesky X-chromosome.  One little dangly piece of DNA and it messes up everything.  Of course, it also makes for the most loving, sensitive, sweet kids on earth.


Y is for... 

Our boys' absolute favorite website of all time is You Tube. They could watch videos of their favorite shows all day long.  One of their favorite Wiggles videos wasn't on You Tube, so I recorded it myself with the iPad and uploaded it to You Tube.  It now has well over 1000 views, and I am sure they all my sons'.

Z is for....

What a Zoo our life can be!  From Zooming between doctor visits, and Zipping through therapy appointments, we Zigzag through our Zany days with Zest and Zeal.

Whew!  That's a lot of Z words!  I had a lot of fun putting this list together, I hope you enjoyed it and learned something about Fragile X!

Good places to find out even more about Fragile X disorders:

www.fragilex.org

www.fraxa.org

 

Seeing the Person before the Disability

In the disability world you may have noticed a big campaign going on for the past couple of years.  (At least that's how long I've been aware of it.)   The campaign is called "People First."  It's to remind you that people with disabilities are just people.

Do you wear contacts or glasses?  Did you know that you have a disability?  You do.  It's just that wearing glasses is so common it's become normal.  Nobody considers someone whose eyesight is failing to be disabled.  It's a disability that even has a cure, now - lasik.

The problem is that the general public is a lot less comfortable with the less common disabilities.  Wearing glasses makes you look smarter.  Glasses add to your attractiveness and desirability, at least that's what producers of eyewear would have you believe.  Sitting in a wheelchair doesn't work that way, does it?

If you have kids with disabilities, you have a front row seat to their lives.  You probably don't have any problem knowing the person before the disability.  If you don't have kids with any kind of disabilities, however, it's harder.  It takes an enormously open mind to see the person, rather than the person-in-a-wheelchair or the person-who-can't-talk-normally or the person-missing-a-limb.  Without experience with these people - without having opportunities to get to know the people who live with disabilities - it's next to impossible to have that enormously open mind.

It's easier if you knew the person before he or she had a disability.  If it's something they weren't born with.

Remember Jack Jablonski?  I wrote about him before, here.  He's the local teen who was paralyzed during a high school hockey game.  He has received so much love and support.  It's easy to see Jack, and not the disability because he was a nondisabled person, first.

I met a girl named Marrie last year.  Her name is pronounced Mary.  Here's a short video of Marrie testifying at the Minnesota State Capitol.

She has a twin sister named Carrie, and Marrie was born with cerebral palsy.  I got to know her last year at Partners in Policymaking, and I got to see the person behind the body that doesn't work quite right.  I've never experienced Marrie-without-the-disability, but I can see past it now, because I got to know her.

I know, I've harped on this subject before.  The recent death of Roger Ebert got me thinking about it again, though.  Roger Ebert was disabled.  Most of us don't think of him that way, because we knew him before he had a disability.  He was a person-without-a-disability first. 




Cancer took away a lot of his face and his ability to talk, but thanks to modern technology, he still had the ability to communicate.

In this video, Roger explains with heartbreaking personalization why society is so uncomfortable with living, working, and playing alongside people with disabilities:

"It is human nature to look at someone like me and assume I have lost some of my marbles.  People talk loudly and slowly to me.  Sometimes they assume I am deaf.  There are people who don't want to make eye contact.

It is human nature to look away from illness.  We don't enjoy a reminder of our own fragile mortality."

"We are all just one banana peel away from joining the disability movement."
(I heard this for the first time at Partners in Policymaking, but if you Google this phrase, you'll find it attributed to several different people.)

 

When you hear about battles for legislation to help people with disabilities, think about Roger Ebert. Think about Marrie and Jack.  And watch your step, literally and metaphorically.

Change Your Attitude - When Disability is Hard to See

There was a kid at school today who was having a tantrum.  They had him blockaded between a couple of the secure entrances so he couldn't get to anyone or anything to cause destruction or harm.  Before they had him blockaded, he threw a chair across the hall.

It's always sad to me, to see this happen to one of the students at my school.  When I was walking by, I heard the teaching assistant say to the kid, "You've got to calm down."

And the kid hollered back "I can't just calm down!"

A few years back I'd have thought he was just being a "bad kid."  Now I have children with behavioral problems, and I see things very differently.  I understand that very possibly, he's right.  Maybe he absolutely can't calm himself down.  Maybe he's not just being difficult.  Maybe he doesn't have the ability to settle himself down once he gets worked up.

I remember when I was a kid, getting mad about things that didn't go my way (because when you are a kid, you still believe it's all about you) and I can remember my dad saying "Change your attitude!"  And I remember thinking that was about the most ridiculous thing I'd ever heard, because no human could control their attitude, could they?  It just was what it was.  Wasn't it?  It wasn't like a faucet I could turn on and off.  I couldn't control it at all - actually just the opposite.  It felt like my feelings and my attitude controlled me.  And all that could calm it down was a little quality time, alone in my bedroom.

Growing up helped me get a handle on it - maturity taught me that I could control my feelings, at least to an extent.

This kid - he looks like an ordinary teenager.   He talks like he's fairly mature and intelligent.  But maybe his emotional maturity is stunted - stuck.  Maybe he feels like I did, as a kid.  Maybe he really can't control his attitude.

I've seen him fly off the handle before, and it surprised me.  At first (and second and third) glance, he seems pretty normal.  I guess those are the ones that have the most trouble, though.  The ones who seem like they might not need any help.  The ones who have to work (or their parents have to work) to prove they have some problems.  I really feel for those kids and their parents.  That's one thing we have never had to do - convince someone that our boys have a disability.  Theirs is readily apparent from the moment you encounter them.  I worry about these kids whose needs are more difficult to see.  They are the ones who will really struggle, and might fall through the cracks of the system.

Deep thoughts about Jack, and people with disabilities

I've been thinking a lot about Jack Jablonski this week.  He's the high school hockey player here in Minnesota who was injured during a game, and will live the rest of his life as a paraplegic.  His story is just so tragic.

I think it's his parents, though, who I am most sad for.  It's his parents I can relate to.  I relate to the grief over losing the child you thought you were raising, and coping with the prospect of raising a child you never imagined you'd have, and doing it all instantly because there isn't time to go to bed and cry when you are a parent.

I am thinking that Jack is going to be a great example of something, though.  He doesn't know it yet and neither do his parents.  But it's so easy to look at a child with a disability he or she was born with, and only see the disability.  If all you've ever known is the child with autism, or the child with Down Syndrome, or the child with cerebral palsy who is in a wheelchair, right from the get-go you make assumptions about what that child is going to be able to accomplish in life.  Or not accomplish.  Before you have a chance to get to know that child, you already know he or she is saddled with a diagnosis, a label, that will change how everyone perceives him or her.  How that child perceives him or herself.

When you hear that a friend's child was diagnosed with autism, immediately you have ideas in your head of what that child is like.  Right?  I know I do.

I think, though, people are a lot less likely to make those assumptions when someone's disability occurs mid-life, to someone who was born entirely typical, able-bodied and able-minded.

Is Jack any less valuable a person, now that he won't have the use of his legs?  Of course not.

Is he less smart?  Is he less important?  Is he less HUMAN?

Of course not.

Shouldn't it be that way, for every person with a disability?

No matter how they came about it?

Let's all think on that for awhile.

 I read once that with innovations in protective head and body gear, in the last few years soldiers being injured in Iraq and/or Afghanistan or elsewhere are much more likely to survive their injuries, and come back home with a disability. This means we have more disabled vets than ever before.

It would stand to reason that this would hold true with people injured in other ways, as well.  Medical advancements are saving lives every day, but not necessarily returning them to "normal." Which means there must be more people in general living with disabilities today than there have ever been.

This is good news - saving lives is good news!

Now we need to stop allowing people who have a disability to be discriminated against.

We need to stop assuming we know what a person has to offer, based on a word, a phrase, a medical term, or our first overall impression.

“I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
— Jerry Newport (Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger’s Syndrome)

“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”
— Temple Grandin (Thinking in Pictures, Expanded Edition: My Life with Autism)

We need to stop seeing people with disablities, and start seeing people with abilities that might not be so obvious.