The Fragile X Walk down the Yellow Brick Road

I've accepted Fragile X's place in Zack and AJ's life for now.  While they are little kids.  While we work on potty training, and accepting a bigger variety of foods, and learning to be social and play nicely with others.  I have achieved that level of acceptance.  Fragile X is here and it's not going anywhere.

Evidently I'm not as accepting of Fragile X in their lives in the future.  Because when I hear about bigger kids and adults with Fragile X, and all the assistance they still need to live, and their vulnerability and innocence, and the way their parents still have to worry and fuss over them as if they were five years old - it chills my heart.

This past weekend's guest Fragile X Writer, Cindi Rogers, has two sons who are in their 20s and she still has to watch over them like they were toddlers.   She can't go out unless she has someone to watch them.   I have a friend here in Minnesota who has a son who is 17, and her situation is the same.   She can't come to functions unless she brings her son, or they get a sitter.   For a 17 year old.  And I have known this about Fragile X and cognitive disability for years now, but it still sucks the breath out of me and makes me sad.   I guess I'm not there, yet.

I guess acceptance of the Fragile X thing is a long, long, walk I'm on.  Kind of like a yellow brick road.  I see scary things in the future, but I must trudge on to the Emerald City.  I think maybe I've met the Scarecrow, but I'm not sure I have the Tin Man with me yet, and we definitely haven't run across the Cowardly Lion.

I hope I kill the wicked witch on the way.  I could use a broomstick.

Maybe it's like that - Like Dorothy, I won't be afraid of the Wizard when I get there, even though he's loud and fierce, because I'll have been through such a journey already that he can't scare me anymore.  Maybe I'm developing courage, smarts, and heart along this way while the kids are still kids.  Maybe this is all molding me into the person I'll need to be, to be able to stomp my feet at the Wizard and say "No!  I have come all this way and you WILL help me get home now!"

Cindi Rogers is there.  She's standing in front of the Wizard, and he doesn't intimidate her at all.  She's strong enough now to make demands and get her sons' needs met, and even to make sure they have happy, fulfilling lives.
And oh, those cute little folks working in the Oz salon, who primped and prepared her to meet the Wizard - they did an awesome job.  I hope I look as good as her when I meet him.
But I bet Cindi would tell me, like the Wizard told Dorothy, that I've always had the ability to get home.  I've always had the strength and courage and smarts to do what needs to be done, and I just didn't know it.  Cindi knows.

Why this was the hardest conference yet

Now that the conference is over, and all 900 attendees have boarded cars, buses, or airplanes, flinging us back to our various homes across the world, I can reflect on the experience.

This was my third International Fragile X Conference.  I attended in 2008 in St. Louis, and in 2010 in Detroit.  The boys were three, and then five years old.  Still pretty little.

The St. Louis conference in 2008 was my first exposure to big kids and adults with Fragile X.   It was hard to see how affected they were - how clearly not "normal" they were, and know that my boys, barely more than babies at the time, have the exact same disorder that makes them that way.

But the speakers, doctors, and researchers at that conference were full of enthusiasm and all-out excitement about the new drugs and recent scientific breakthroughs in Fragile X research.  There were medications that could provide treatment that helped like none before them, and some people were even throwing the word "cure" around.

So it was easy to look at those big kids and grown-ups with Fragile X and separate my children from them.  They were great, wonderful people, but my kids weren't going to be like that.  It was too bad that those affected people had been born so long ago, back in the 80s and 90s, when they didn't know as much about the brain and development and there weren't as many types of therapies.  I listened to brilliant professionals talk about the new medications being developed and the amazing results they were seeing in the trials, and I felt real hope that my boys could grow up to be "normal."

Two years ago in Detroit, it was much the same.  My little five-year-old guys had been doing so well in their ABA therapy.  They had great preschool experiences and their teachers were full of promising, glowing reports of their progress.  They had come so far.  I knew there was more progress to be made, more studies needed, but I felt stronger in my hope that they could grow up and have a level of intelligence and independence that frankly, I didn't see in the grown-ups with Fragile X I'd met so far.

Then came this, my third conference, in Miami.

The first session I attended was called Mrs. Rogers Neighborhood -- life experiences, suggestions, and coping strategies by the lovely and vivacious Cindi Rogers, a mom of two adults with Fragile X.  The beginning of the session covered schedules and planning techniques.  People with Fragile X are very attached to their routines, and their sky-high anxiety levels off if they know what is coming up, how long it will last, and what is going to happen next.  Pictures schedules are a great way to show them what is going to happen and what is expected of them.

(I personally find picture schedules overwhelming.  We have tried it off and on, but I get tired of there being 292 little laminated pictures all over my house, all with peanut butter and Doritos smudges and teeth marks.  I can never find pictures in my stash to represent what I want to show the boys, so every day I'm making more of them.   More tiny pictures to be thrown on the floor a dozen times, until finally the vacuum cleaner gets clogged with them.

So I've found an app for the ipad that lets me make an electronic picture schedule.  It's called Choiceworks.  I love it.

Anyway...)

I despaired a little, at her picture schedules.  I thought about the time and energy she put into it.  I can't imagine that she slept, ever, with the amount of planning and organization that has to go into it. Right away, my head filled with doubt and a little panic.  I don't think I can do that....

Then she showed videos of her sons, all grown up and in their 20s, at their jobs.  Her younger son arrives at work, puts his lunch bag in a certain spot, and gets ready for work.  Then he has to go jump in the corner for a minute, to "find himself in space."  My heart hiccupped, because jumping like that, he looked just like both my boys.  Only in a grown up body.

Then the video showed him skipping happily down a hallway, on his way to pick up his broom and sweep the floors, just like he did every day at his job.  He didn't walk or run, he skipped.  And he looked exactly like a grown-up Zack.  Skipping and hopping every where he goes, never walking.  And I couldn't hold it in.  I didn't move or make any noise.  I didn't breathe any differently.  But the tears spilled over and streamed down my cheeks.  I didn't look to my left or my right, because I didn't want any sympathy from anyone, or I'd have completely lost control and the whole room would have known.

I touched my cheeks briefly to clear them, looked at my phone as if I'd had a message, and got up and left.  I composed myself in the hallway but went straight up to my hotel room, where I had a breakdown for about 20 minutes.

So in any pictures taken that first day that you might see, if my face looks especially puffy, it might not just be chubby chipmunk cheeks.  It might be because I wept hard and swelled my eyes up good, first thing in the morning on the very first day of the conference.

It's not so easy anymore to separate my boys from the grown-ups with Fragile X.  Zack and AJ have the same behaviors, the same mannerisms, as those grown ups.  They aren't babies anymore, soft and pliable and unformed.  They are seven.  They are strong and sturdy, and becoming the people they are going to be for life.  There are glimpses of the adults they will be.  And the adults with Fragile X that I see are starting to be an all too real indication of how they will be.

I want to appologize to my friends who have children who are adults with Fragile X Syndrome.  I don't mean to offend anyone.  This is just a very honest tale of what I guess is my journey to acceptance.  We've had a diagnosis of Fragile X for a little over six years now, and I'm obviously not really there yet.  I don't think I even realized it until Cindi's session.

Once I got past the first day, things were easier.  Part of what's wonderful about the International Fragile X Conference is just the experience of being in a place where everybody knows your name.  Where everyone has kids just like yours.  Where it's completely ordinary to see kids riding the escalators and elevators as if they were amusement park rides, laying on the floor working on an iPad, falling over on the floor to hollering, refusing to move.  It made me want my boys to be there, just to experience that feeling of fitting into society.  Where people think the odd behaviors are cute.

I met so many friends - people I've been calling friends for a long time, even though I only knew them from their blogs or from Facebook. I love knowing people personally who are on the same path as I am.

Sometimes I wish the whole world could be like this - the way it is in the hotel during the conference, surrounded by other carriers and full mutations.  If only the level of personal connection, acceptance, and knowledge that I have here could exist in the real world. Everywhere I looked, I saw people who have children with autism; with hyperactivity; with intellectual deficits; with sensory processing trouble; with debilitating anxiety; indeed, with Fragile X Syndrome.  It wasn't unusual there; it was usual.

There were low points, definitely, but there were more high points of the conference - like the Miami Marlins baseball game, attended by 400 Fragile X parents and professionals.  We watched as Glenn Sheldon, a 13-year-old boy with Fragile X Syndrome, threw out the first pitch of the game.  We all felt the pride and joy in watching him succeed in doing that as much as we would if it were our own children.

Another highlight was the special screening of Mission to Lars, a documentary made by the brother and sister of Tom Spicer, a man with Fragile X, about his lifelong dream to meet Lars Ulrich, the drummer for Metallica.  The film did a great job in showing how Tom's anxiety is truly a disability, as he had to overcome one barrier after another in their journey.  The audience all knew Fragile X inside and out, so we felt his pain and cheered hard for him once he finally succeeded in his Mission.  Click here for more information on this great documentary.

Many, but not all of the Minnesotans who attended the conference.

I think for me, each experience - each conference - builds on the experiences I've already had, and it's hopefully bringing me to a point where I can accept the boys and whatever future they will have.  Coming home was a odd experience, since you go through such an intense, emotional, life-altering experience there.  I felt like I'd been gone a lot longer than five days.  The landscape seemed very different, foreign, somehow, for the first few minutes.  By the next morning I had fit myself back into my groove, and the kids and I are back into our routine.  With, possibly, a few additions and changes to incorporate what I learned at the conference!

This Great Idea I Have for a Class to Teach Acceptance

The antibullying movement is so strong lately.  And that is a great thing.  I am happy kids are being taught that mistreating each other won't be tolerated.

But I have an idea how to reduce the tendency for kids to pick on each other in the first place.



There ought to be a mandatory class for elementary students.  Something called Awareness and Acceptance.  Something to teach them to accept people that are different from them, in any way.  Something to show them how to interact and behave humanely.  To teach empathy.


I guess it would fall under the category of sociology or communication.  That, and maybe health.

And the special needs kids all need to be in that class.  Sitting right next to the typical kids.

No, not just next to them.  Interspersed through them.  No kid with special needs should be sitting next to another kid with special needs.

And maybe once a week, there's a seating rotation.  Something to ensure that everyone sits next to everyone else, at some point during the length of the class.

And it needs to be a whole semester long.  Not just a special all-school rally, one afternoon, in the gymnasium.  These kids need to be forced together in a classroom every single day for a whole semester so they really get to experience each other on a personal level.

Sort of like Partners in Policymaking is teaching me to be more aware and accepting.  Because it's not necessarily my fault I don't know how to talk to the woman in the wheelchair with such several cerebral palsy that she constantly makes odd body movements and is almost impossible to understand when she talks.  I've just never in my whole life been in such close proximity to people with those kind of disabilities.  At least not regularly, and often enough to get used to them.

I mean, I'm going to forgive myself for my uneasiness.  I think it's only natural to be uneasy around the unfamiliar.  But I'm working on it.  Every time I see her, I'm a little more comfortable with her.

It makes me wonder how different I'd be, if I'd grown up personally knowing some people with disabilities like her.

Which leads me to wonder how different our whole world would be, if everyone did.

Oh Holy Weekend

We had three Christmas celebrations to cover this weekend at three different houses, along with some travel. So we had meticulously planned out every aspect of our weekend.

It all began on Friday -- Christmas eve.

Mark didn'thave Christmas eve off work (Friday). So the kids and I went to grandma & grandpa's house in the middle of the afternoon, and daddy followed along later in the evening after work. It wasn't ideal to have to take two cars, but it ended up working out well because this way, Mark could set out the Santa presents, eat the cookies, and drink the milk that Aliza had set out for him. By the time we got back home on Christmas day, the house would be all set up, showing evidence of Santa's arrival. For Aliza. Although the boys know who Santa is, I don't think they are caught up in the whole story of Santa's travels on Christmas eve.

So Christmas eve, hanging out at my parents' house, went as planned.  I would have liked to have had time to drive around town looking at Christmas lights, but we didn't specifically write that into the plan, so it didn't happen.

Christmas morning we waited for Uncle James, Auntie Kim, and Jocelyn to come over so the kids could open their presents.  Aliza had been gazing longingly under the tree since the night before.

Zack didn't want to open any presents.  I guess the nine of us were too much of a crowd for him.  So we let him escape back to the basement and to his Wonder Pets.

AJ, though, really got into the ripping and tearing part of presents.  He was only slightly interested in what was inside, but he sure got into the opening part.  Especially the ones that had Dora wrapping paper.

So, we figured one out of two wasn't bad.  We let AJ open all Zack's presents.

Jocelyn got some fun presents and we all had a great time hanging out with her.  She's two, and turning into a little spitfire.

Later we were talking about getting ready to head home, when Aliza announced that she was excited to go see what Santa had put in her stocking.

Oops!  The stockings --I forgot to have Mark do the stockings.  Okay well no problem, we were in two cars -- one of us could leave a few minutes before the other, get home first, and quick do the stocking stuffing.

So we starting packing up the cars.  We determined that Mark would leave first in my car with the boys, because they were tired and ready to go, and the DVD player was already all set up in my car and ready for them.  Mark took my keys and packed up both vans.  Aliza and I were going to follow along a few minutes behind them in Mark's car.  I told her it would be a great chance for her and I to have girl talk.

Then as we were saying goodbye, Jocelyn let me hold her. Which I appreciated and was a little bit of a Christmas miracle, because she is a two-year-old, after all, and quite busy and quite discriminating about who is allowed to take up her time and when.  And it's not that I don't get to hold kids, having a couple of five-year-olds who think they are two-year-olds, but she's just so compact and soft and still so babylike.  So we cuddled for a minute.

I'm going somewhere here, I promise.  Stay with me.

So off Mark goes with the boys, we do all our bye-byes, and I go back in to the house to see what else we forgot.  I find the pile of blankets and pillows we brought and throw those in Mark's van.  I see that the boys' sippy cups are still here, filled with milk, but I have the cooler with their medicine, so I can just throw the sippys in there.  We're good to go.

I'm not sure what triggered the thought but at this point it dawns on me that Mark never gave me the keys to his car.  I check my pockets.  I check the table next to the door where he always puts them when we're at grandma & grandpa's house.  No keys.

Oh, holy night.

I turn and look sharply at the driveway, as if I'm going to see the tail end of my car rounding the corner.  As if he didn't leave 25 minutes ago.  As if there's a chance I could catch him.

I go in and break the news.  We are stranded here, I have no keys to the van.  My dad says to call him -- doesn't he have a cell phone?  Well no actually, he doesn't.  We have a cell phone, which I usually carry.  Yes, it's nearly 2011, and Mark doesn't have a cell phone.

And I don't think we were aware of it at the time, but this is the point at which all logical thinking went right out the window.

My quick thinking brother suggests immediately that we call the police and have them pull him over and tell him to come back.  I think about how much Mark would love getting pulled over by the police on Christmas.  I don't know if they would even do that.

But, wait, I have an even smarter plan.  I think I can hop in my parents' car and fly down the highway, and catch up to him.  Because apparently I'm going to drive like a bat out of hell.  Oh and did I mention that it had been snowing most of the day?  And that my parents live on a gravel road, which when it's cold and icy, is like driving on marbles?

We give it a good try anyway, me and my dad.  We drive like crazy people probably a quarter mile down the road before we accept that this is perhaps not the best plan.  We turn around and go back.  Okay, on to plan B.

Plan B is to take one of my parents' cars, and just return later in the week for the van.  So we quickly transfer everything in the van -- the blankets and pillows, presents, and my computer, camera, and purse to my dad's car.  There's a long, intense discussion about when we are going to do the car switch, because there's another snowstorm expected later this week, and if the van sits out in the driveway for too long it not only will be in danger of not starting, but it'll be snowed in.

We try to put it in neutral to roll it into the garage.  But you can't put it in nuetral without the keys.

So Aliza and I take off in dad's car.

I'm stressed though.  I'm worried that Mark's going to realize he still has his own keys in his pocket at some point and he's going to freak out and turn around, and come back to my parents house. Aliza and I peel our eyes looking at every car coming the other way, to see if it's our van.  I cannot imagine what he's going to say, but he's not going to be happy.  Oh, if only we hadn't been in such an all-fired hurry.

Aliza and I get about an hour down the highway before she decides she has to stop and go potty, which is interesting in itself because this kid, who brags about how she can get through a 6 hour school day without visiting the bathroom once, apparently can't go more than an hour in the car without having to go.

We stop a gas station and while she's in the bathroom I call home to see if Mark has arrived yet.  He has; he is a little breathless from having quickly gotten the stockings stuffed and the boys out of the car.  He wants to know how our drive has been.  I tell him it's fine, and ask if he's noticed yet that he still has his car keys on him.

He pauses and says he doesn't; he put them in my pocket when I was holding Jocelyn.  I say no, I've checked my coat pockets over and over.  He says no, not my coat pocket, my sweatshirt pocket.  I didn't have my coat on yet when I was holding Joci.  I unzip my coat, check my sweatshirt pocket, and -

Oh.  Oh holy christmas tree.  There they are.

I don't think I spoke for several seconds.  I needed a little time to process what a dork I am.  Only I wasn't thinking "dork,", that's just my effort to keep this PG.

So to make a long story short (too late?), we arrived home and to her great delight, Aliza found that Santa had left her and her brothers presents, and stockings full of goodies.  And I tried to get over the overwhelming desire to climb into a hole somewhere and stay there until all memory of this event had passed.

And I have to end by saying what an utterly wonderful family we have.  We are so enormously blessed by family who loves our children wholly and unconditionally.  No matter whether they behave appropriately.  No matter whether they say "thank you."  Our children have aunts, uncles, cousins and grandparents who all go out of their way to make them feel joy and love, during the holidays and all year long.

We are so grateful to have family that not only accepts our boys as they are, but goes out of their way to show them love and affection.  That is our real Christmas present!

27 and Still a Believer

This story recently made the rounds in the Fragile X email group.  It's a sweet tale for the holiday season.

Twenty-seven and Still a Believer

My son, Simon, still believes in Santa Claus. I recently helped him with his annual letter to Santa. This year, he requested a new whoopee cushion, snow boots, nunchuks for his Wii, a six-pack of Budweiser, and Catherine Zeta Jones. It's a weird list. But there’s a reason for the weirdness: Simon, age twenty-seven, has fragile X syndrome and is mentally impaired.

Simon’s mental age is hard to estimate. He can’t read or tell time; math might as well be Sanskrit. If you ask him what day of the week it is, he has to guess. “Saturday?” he’ll say. “Friday?” His speech is garbled and he can be hard to understand. But he’s a savvy guy who never leaves the house without a cool pair of sunglasses and a ball cap, who hangs out with aplomb, who recognizes anyone he has met even once and greets that person with genuine enthusiasm. He is particularly thrilled when he sees someone in a uniform: a police officer, the mail carrier, Santa Claus.

For the past twenty years, Simon has greeted every Santa Claus he has seen with the same chuckling hey-I-know-you approach. This is the pattern: He strides up to the red-suited man with an odd, almost stiff-legged, rolling gait, cracks the biggest smile in the mall, and says, “Hi Santa! Remember me? I’m Simon.” Then, because repetition is at Simon’s very essence, he lists, in a sing-song voice, what gifts he wants, ticking them off, one by one, on his fingertips. He has practiced this routine often. For the past several years, most of what he has wanted has come from electronics stores; he scrutinizes their flyers intently. He studies the newspaper too. In past years he asked Santa to help victims of Hurricane Katrina, the Asian Tsunami, and the earthquake in Haiti.

Because Simon doesn’t have a logical sense of time, he starts bugging me to leave out cookies and carrots for Santa and his reindeer as soon as he sees the first Christmas decoration of the year. “We need to put cookies out,” he’ll say. “Not tonight,” I’ll answer. “Christmas is a long time away.” Then I’ll show him the calendar and touch a pen to all the days. “A long time?” Simon will repeat. “A long time?” And the next night Simon will look at me, lift his eyebrows, as red as his hair, and ask if we can “put out cookies tonight?”

I assume some responsibility for Simon’s anxiety about the holiday. In theory, we shouldn’t celebrate Christmas at all. I’m Jewish. But my parents were agnostics. The family Christmas tree was a celebration of shopping, not Jesus. For the first six years of Simon’s life, when I was married to his father, a Methodist, we continued my family’s tradition of joyful gift-giving. Santa was visited, sat upon, and petitioned. Then I married my current husband, who was raised by observant Jews and could not accept a Christmas tree in the house. I had to assure Simon that tree or no tree, Santa would come. When he was little, we had a tree but no chimney, I pointed out. Then we had a chimney but no tree. Even when we had neither tree nor chimney, Santa came. Simon accepted the logic. Simon also accepted even the most bedraggled Santa, with his obviously fake beard and bleary brown eyes. As he grew older, though, he became more discerning. I had taught him the word “fake” to warn him about television advertising and scary movies. He understood acting and that’s the category into which he placed the inferior Santas. That category also allowed multiple Santas: one inside the mall, one outside the grocery store, one smoking behind the restaurant. If I asked, Simon told me where the real Santa was. “The North Pole, duh,” he said.

In some ways, Simon is a typical twenty-something. He stays up late; sleeps late. He’s had this pattern for years. So to perpetuate the myth of Santa I have to set my alarm for 3 a.m. on Christmas morning. I climb out of my warm bed and retrieve presents from their hiding places. I stuff the huge, stretchy stockings that my mother knitted, eat the cookies and carrots, dump the milk in the sink, run water to remove that evidence, and climb back into bed. Every year when that alarm rings, I question my sanity, my qualifications to mother this challenging child. Should I tell Simon the truth? Lying makes me uncomfortable. In fact, I pride myself on my honesty. I remember an argument I had years ago with my older son, Sam. “I have never lied to you!” I cried. “Santa Claus, tooth fairy, Easter bunny,” Sam said. “I rest my case.”

I know Simon has heard people say that Santa Claus is not real. One year we were at an event attended entirely by adults and someone made a loud, snide comment about a fictitious Santa. I glanced across the room at Simon. He usually avoids eye contact. But he met my gaze, shook his head. We know better, he seemed to say. And he settled, smug, in his chair.

By Nancy Abrams
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

This story is the embodiment of bittersweet for me.  I think it's a little charming.  But I can't help but be sad at the idea of a mother who still has to perpetuate the myth of Santa for her 27-year-old son.  It's beautiful and agonizing and inspiring and thought-provoking and heartbreaking all at once for me. 

I think appreciating this story necessitates a level of acceptance of the boys' condition that I have yet to arrive at.

Since their diagnosis four years ago, I've slowly become aware of the need for acceptance.  Every parent needs to accept their children as they are.  Naturally, it's pretty easy to accept Aliza as she is, knowing that she will grow up to BE Santa one day for her own children.  Accepting the fact that my boys most likely won't reach that level of mental maturity is not something I've been able to do.

There's a documentary called Living with Fragile X that tells the story several families living with Fragile X, including a set of identical twins.  It's a fantastic show, I've petitioned PBS to show it several times, and will keep trying until they broadcast it.

One of the mothers of a Fragile X son who is profiled in the film says this about her son:

"I wanted him to be normal.  And if I have any regrets, it's that I did not let myself love him at that moment.  Just say 'I love you just the way you are.'  And I hope he forgives me for ever thinking I wanted him to be different."

Her voice wavers as she says this and it stabs in the heart me every time I see it (click on the link above and watch the 2-minute trailer to see this mother and her son), because I know, I'm her.  I have not accepted Zack and AJ as they are.  I want them to be different.  I admit it.  I know it's awful.  But I can't help it.  I wish they were different.

I like to tell myself that I want them to be different for their own good; I want them to be less anxious and less impulsive and sleep better.  I think they'd be happier if they had a greater variety of interests and could communicate better.  Could go to our neighborhood school and be in that kindergarten class.  Go outside with their sister and play in the snow with the kids on our street.  I think all these things would really enrich their lives.

But it isn't just for them.  I want them to be different because I want normal kids.  Just like the mother in the video.  I don't want to regret thinking this way, when they are adults.  But I don't know how to just turn that feeling off.

 I don't know Nancy Abrams personally, but I emailed her and she gave me permission to reprint this here.  Thank you Nancy, for sharing this story and for showing me where I need to go to accept and love my boys as they are.  I have a long way to go, but I'm on my way.