Update…how has it been more than 4 years?

I know it has been longer than forever since I posted on here.  What can I say, life is busy and I’m distractable.  In fact, I’m sure that the only reason I remembered this was here is because I’m supposed to be writing my dissertation and my subconscious is super amazing at finding excuses to procrastinate.  All I know for certain is that I’ve been thinking for a while that I should post an update on where we are now.  When I first started researching Fragile X I feel like these were the years that were hard to find information about….what happens when your child is in the early school years?  What’s it like?  What did I have to look forward to?  So for those of you whose children are younger I can tell you that in my experience it’s busy.  I know that’s not the best descriptor, but it’s what I’ve got.  We have spent a lot of time trying different therapies, with different therapists these past few years.  We’ve gone through several medication switches.  We’ve got some things much more under control (sleep is WAY better, still not perfect but much much MUCH better).  Other things are still a huge struggle (the hyperstimulation in public settings is still a major problem for us).

The last time I gave a real update on Elijah was shortly before he turned 4.  He was in an inclusion pre-school and I had no idea what we were going to do for elementary school.  In the interim, the administration at his preschool applied for and were granted a charter for Denver Public School’s and we’re now taken care of through the 5th grade.  Elijah’s currently in 2nd grade, so I’ve got a few years before the next educational hurdle.     He is now 8 years old.  Developmentally he has made huge gains in expressive and receptive language, gross motor skills are fairly on par for his age and fine motor remains a major struggle for him.  Socially he is becoming more interested in his peers, but still needs quite a bit of support to be successful and honestly if it weren’t for the fact that many of his classmates have been with him since he was 2 1/2, I’m not sure how well that situation would be going for us right now.  He still has an amazing sense of humor, still responds pretty well to behavioral techniques and has recently begun to try to overcome some of his long-standing fears (vacuums, hair dryers, blenders….anything that makes a similar loud noise).  While he has added several new foods to his diet, he also still has an extremely limited diet, still throws up when presented with foods he doesn’t like (which are nearly all of them…..he doesn’t even have to be the one eating them, watching someone else eat can be enough of a trigger at times).  Additionally, we’ve added throwing up as a behavioral response to multiple other challenges….courtesy of a rough strep season he now gags every time he’s in the doctor’s office and often throws up as soon as the doctor walks in the room.

We are currently doing Occupational Therapy and he takes swim and ski lessons.  We will soon be adding in an adaptive gymnastics lesson with an occupational therapist who works on fine and gross motor skills throughout the gymnastics lesson.  I’m pretty excited about that one as it seems those sort of things are pretty hard to find out here.  We’ve considered doing hippotherapy, but timing hasn’t worked out yet and we may be putting him in an ABA camp this summer, but we’re still exploring that idea and making sure they are comfortable with the adaptations required for working with Fragile X.

Overall, life has settled into a fairly predictable, more than a little busy, rhythm.  Which is probably best all around as predictability makes for smooth times with Elijah.  He has adapted very well to the addition of his baby brother and I’m really looking forward to watching their times together as Micah gets older and more interactive.

Approximately six years ago, I titled this blog and the subhead was “finding strength in the face of fragile x.”  I’m not sure this is the most appropriate subtitle any longer.  Early on strength was definitely what I felt like I needed, but that has shifted over the years.  Honestly these days I spend more time asking and searching for wisdom, creativity and most of all patience….it sounds like a cliché, but the pure love that Elijah brings to this world makes strength a lot easier than I once imagined it would be.

That’s where we stand now and hopefully it won’t be another 4 years before I post an update here 🙂


Tell Me a Story…

We all have stories we tell about ourselves.  One of my favorites (because for some bizarre reason I’m completely okay with making fun of myself as long as it’s funny) is the story of a time I was in London with one of my best friends.  We went to the Hard Rock Cafe (because it’s pretty much as close to Mecca as you can get with her!) and they were celebrating their 30th birthday.  As we were leaving I noticed a tremendous poster of Jimi Hendrix.  I guess I must have had a funny look on my face or something because Angela asked me what was wrong. (And now I need you to picture the most valley girl confused voice you can here….)  So I looked at her and I said “Well, if Jimi Hendrix was black then how did Val Kilmer play him in the movie?!”  I think she might have actually stopped breathing for a moment she was so shocked.  Finally when she regained her senses she said “Jim Morrison Nikki, MORRISON!” and stormed away in sheer disgust.  So yeah….one of my stories is that I’m almost completely ignorant of all things musical.  Or really celebrity related.  I’m STILL not entirely sure who the Karshians are.  I actually thought they were something from StarTrek for a while….but that’s another topic I’m woefully ignorant of.  For quite some time I was actually convinced that pretty much every song that came out before 1985 was sung by Lynard Skynard.  I think you get the point.

Each of these stories we tell about ourselves to others serves to define some small piece of who we are.  I’m not sure why I was thinking about it the other day, but since I’ve been so busy at work my mind has literally been in melt down….and when your brain gets all melty and gooey your thoughts run together in weird ways and perhaps sometimes it produces something that’s not a complete mess.  Anyhow, I was thinking about the stories and how we also tell them to ourselves.  We define ourselves by our own visions of how we’ve lived our lives.  And also by the other people in our lives.  I am a sister, a daughter, a wife, a mother, an employee….etc.  Each of things are a part of the definition of me.  But if you think about it, our stories are extremely dependent on other people.  What happens when one of the people in our lives turns out differently that we originally envisioned?  How does the change in their story redefine our own?  For example, if you’ve always thought of yourself as someone who rose above the chaos of their childhood and then it turns out the parent who created the chaos actually has some sort of illness…..does that now actually make you a bad person because you weren’t more sympathetic to their situation?   Did you still rise above it, or did you abandon the person?

As a parent, how much of our identity is tied up in our children?  How much do we view their successes and failures as a reflection of ourselves?  What happens when that child doesn’t live up to, doesn’t want to live up to, or can’t live up to, the expectations we had of them?  How many parents want their child to be a football star or a musician or a doctor only to have them decide that their identity is a Starbucks Barista.  As a parent, how hard is it to take the dreams we had for our children and set them aside….to let our children write their own stories?  And as parents, how will our children view our contributions to their own stories?

The Flipped Inclusion Model


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I’m going to start with a disclaimer.  I’m pretty certain that nobody at Elijah’s school has ever called their model a “flipped inclusion model.”  That’s my own terminology so if it’s confusing or turns out to mean something completely different, mea culpa.  So with that being said, on to the point 🙂

When we first moved to Denver the school we originally wanted to put Elijah in (where he later ended up) did not have any openings for the summer session.  Instead we put him in a local private school that is down the road from our house and we thought would be helpful in providing him a bit of religious background.  We were quite taken aback when, for the first time in our experience, our child not only wasn’t treated as a welcome favorite, but rather as an unwelcome burden.  I had spoken with the administrator of the school extensively before placing him there, but apparently that information did not get conveyed and/or discussed very thoroughly with the actual teacher he was going to be with.  Within two weeks my child who had always loved going to school suddenly hated it and I truly began to have a horrible feeling when I dropped him off.  Each day it was as if I could physically feel the eye-roll and hidden sigh along with the unspoken “ugh, Elijah’s here today.”  It was a completely new and unexpected experience for me after all of the success we had with him in Miami.  I spoke with the director and was ready to pull Elijah out of the school when one of the other teachers volunteered to have him switched to her classroom.  This worked out quite well for a short-time, but then that teacher ended up leaving for personal reasons and we ended up with another new teacher.  This one was significantly nicer than the first one, but I still got a burdensome feeling from the classroom as a whole.  Needless to say we were quite relieved when a spot opened up at the school we originally intended for Elijah to attend.

I tell this story not to bad-mouth one of the schools here (you’ll notice I left it completely unnamed) but rather to display an all-to-common occurrence with a typical “inclusion” model.  Honestly it was the fear of that very situation that made me seriously consider placing Elijah in a school specifically tailored to developmental disorders or at least a completely separate classroom in a different school.  I even briefly looked into private tutors/homeschooling.  So what changed my mind?

Elijah attends a school here in Denver that practices a full inclusion model.  However while many inclusion schools start with a typical classroom (like the school mentioned above) and add supports into that classroom for the kids with various additional needs, Sewall actually starts from the opposite perspective.  Sewall starts with the premise that every kid has special needs and requires individual attention.  Starting with a special needs base and integrating the lower needs kids into it results in a tremendously more successful model for everyone involved.  The teachers are willing and prepared to take on children who can be more challenging….it’s not something that’s forced on to them because a child who needs more focus happens to live in their district.  Parents can feel more comfortable because they know the teachers are comfortable and they never have to feel like their kid is the “problem kid.”  Elijah’s made such tremendous gains in confidence, social and learning skills that it’s clearly a good fit for him.  But what about for the “typical” kids?  What benefit do they get?  Elijah’s school is a 50/50 mix.  What I’ve seen of the kids who are typical learners is that they benefit from significant increases in social skills, they learn faster because they are integrating the knowledge more by helping their peers learn and they are just genuinely nicer kids.  As a society we could all benefit from a more empathic, nicer population.

I’m going to tell you another story, just to prove my point.  A few months back I was in Target grocery shopping with Elijah.  Elijah hates Target, it’s pretty much his idea of hell on earth, but in this case I couldn’t avoid taking him with me.  We went down the aisle that had fruit snacks on it and there was a box of Dora the Explorer fruit snacks that got him excitedly chattering about Dora, Boots and Swiper.  He kept pointing to the box and yes, I’ll admit it, I’m that mom who gave it to him to look at while we shopped and then didn’t buy it when we got to the checkout line (actually I may have this time, but that’s besides the point.)  The box kept him happy and cooperative and allowed me to get the shopping done without him screaming the store down around our ears.  As we went into the next aisle there were two little boys there, about 8 and 6 years old, with their mom.  The two boys started quite loudly and rudely making fun of Elijah and the way he was talking.  Their mother neither said nor did anything to stop or correct them.  I honestly to this day can’t tell you how I kept my mouth shut and didn’t point out to the mother that she was raising a couple of bullies, but other than a nasty look in their direction I didn’t say a word to them and kept talking to Elijah and completed my shopping.  If Elijah had been old enough and/or aware enough to be hurt by their cruelty I’m not sure what I would have done.  I was and still am torn between whether the correct course of action was to take the high road and ignore it, or if in ignoring it I allowed such bad behavior to persist and exist in the world.  That’s a topic for another day though.  If more kids were in an environment like Sewall there would be fewer bullies in the world tormenting other children about whatever quality makes them different.  Whether it’s the way they talk, or dress, or who their parents are or if they can’t walk…..more developed social/emotional skills will provide the training not to engage in that kind of behavior and also the training on how to handle it when the child is themselves the victims of it.

While I am still skeptical of a typical inclusion model, Sewall’s flipped model has been amazing for us and I will always be grateful for the educational gains Elijah has made under Sewall’s model of inclusion.  I wish it was the more prevalent model and have spent a great deal of time agonizing about what happens after he gets past Sewall’s age range.  While Elijah’s educational progress has been phenomenal, the more profound reason that I wish it was more prevalent is that it would reduce the number of kids who thoughtlessly make fun of others.  In the case I described it did no harm to Elijah, but I know multiple children whose parents have worked extremely hard on building their confidence in dealing with other people and the situation I described above would have been crushing to them and possibly undone multiple months and years of work.  So here’s hoping other schools jump on the “flipped inclusion” bandwagon and then we can have a happier society…..and I can stop having palpitations worrying about where Elijah is going to go to school once he’s seven!

Everything and nothing at all

I just finished reading The Oak Leaves by Maureen Lang.  It’s a beautiful story about a family affected by Fragile X told across two different generations of the family separated by almost 150 years. It made me cry, it made me remember all too clearly those initial days after Elijah’s diagnosis and it also made me think of the hundreds of ways Fragile X has changed our lives.  Sometimes it seems like absolutely everything is different and everything is touched by this change….and yet, amazingly and confusingly, nothing really changed at all.

We still love our child fiercely and rejoice in all of his accomplishments, all of the progress.  We know how much work it takes for him to master tasks, and yet he rarely makes it seem like work, always ready with a smile and laugh.  And what a smile it is.  I’ve never seen a child with the capability to make strangers smile and laugh the way Elijah does.  It’s literally contagious.

We still love each other and continue to grow together.  We still have hopes and dreams for ourselves and Elijah.  We still have the support and love of our families.  We still collect silly Star Wars Legos and randomly quote Friends episodes.  Seth still makes the most amazing macaroni and cheese on the planet.

We had Elijah’s first IEP meeting today.  We made the transition from the cuddly and easy world of IFSP’s for those under the age of 3 to the scary, meeting room full of people who may be more concerned with budget than what your child actually needs world of the public school system.  Days like this are days when it really does seem like Fragile X runs our lives.  So I’m glad that it was a day like this when I finished that book.  Because reading about the journey of that fictional character, knowing that the pain, grief, guilt and shock of it was based on that of the author herself, and knowing that she eventually got to the point where she could write and promote a book, that she could acknowledge the blessings within the curse, reminded me to think of all of the ways that everything can be affected and yet nothing at all changes.

These are the ways that I think God takes care of us.  I don’t think he goes around removing the trials and tribulations from our lives, because really, if we all lived blissful uncomplicated lives we wouldn’t be much more than guppies in a fish tank.  Those trials and tribulations ARE life.  God gives us the tools to deal with them, but he doesn’t do the work for you.  Just because you have a hammer, some nails and a bit of wood doesn’t mean you automatically have a house.  You have to use the tools; put in the time, energy and work and build the house yourself.  So there you have it.  My philosophy in a nutshell…..a very mixed metaphor, rambling nutshell.  So really it’s probably not a shell at all.  It’s a philosophy in a mixed nuts bowl.

Sign here…here…here…


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One of the things that I find truly amazing about this world of child rearing is the tremendous amount of paperwork that comes along with it.  Who knew that “parent” translated to “paper pusher”?!  I feel like I spend hours every week filling out forms, signing forms, looking up information for forms.  I wish I could just create a little “Elijah information booklet” that I could hand out to whatever agency/therapist/doctor/school is in need of the information and if there was anything missing that would be all I had to fill out.

I have to admit, on at least one thing I have cheated.  A little over a year ago I created an “Elijah says” word document that I put all of his word approximations on and that I update once a month.  I kind of wish I had saved it in versions instead of saving over the file originally, but I’ll chalk that up to a lesson learned.  The great thing about this file is that I now don’t have to wrack my brain for every single thing that I know he has a “word” for when it comes time to fill out those forms (which are surprisingly common!).  The other thing it’s been useful for is our babysitting book and new teachers to help give them an idea what to look out for.  Since I created that I’ve been wondering what other little short-cut files other parents have put together to make the paperwork less cumbersome.

First…Then…and the ABCs of behavior


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So I mentioned in my last blog that we were involved in a research study with the MIND institute at UC Davis.  I can’t really talk much about the portion of the study devoted to increasing language behaviors, but I did get permission to discuss the behavior oriented portion, which to me has been a truly tremendous help.

On our first visit to the MIND institute I was nearly at wits end because I simply did not know what to do about Elijah’s behaviors.  When it comes to choosing a method of discipline people tend to use what they’re comfortable and familiar with….either because it’s the method you grew up with or something another close family member uses or something you’ve read about.  I’m from the south….in the south (at least when I was a child) we spank for discipline which was a method I wasn’t willing to use for Elijah.  Not because I have some sort of judgmental issue with spanking (studies have found that where spanking is the norm, it actually does not have the detrimental effect on childhood ego that everyone spouts off about), but because I am a firm believer in finding the type of discipline that is best suited to your child and there is no way that Elijah would “get” the idea behind a physical form of discipline.  The only other option I really knew anything about was time-outs and again, this just isn’t a discipline method that will work with/for my child.  I didn’t want to fall into the trap of having no discipline method whatsoever which could only lead to increased behavioral problems over the long-run, but every book I had read on childhood behavior seemed to be written for parents whose children either were Elijah’s age but had no developmental issues or who did have developmental issues but where much much older in age….however you sliced it, the children in these books were more sophisticated and had more coping skills than Elijah and the methods touted were beyond his understanding.  So what was I supposed to do with my child who is the size of 3 year old, with the physical capabilities of a 2 year old and the mental capacity of an almost 1 year old? Where was the book for my child?

So here I am on day one of our participation in this research study and they tell me not only are the going to teach me how best to promote communication from Elijah, but they’re also going to help with all of these challenging behaviors that are starting to emerge.  I can’t begin to describe the relief and hope I felt when I heard that.  What I found truly interesting is that the two methods I was taught are the same methods I had read about for older children, just modified a bit to make them more accessible for a child who is mentally younger and who has less ability to communicate.

The first thing we talked about was the ABC method (Antecedent, Behavior, Consequence).  I was pretty excited to see this as this was the method used in my favorite of the discipline / behavior modification books I had read up to that point: No More Meltdowns by Jed Baker.  So in this case we identified one of Elijah’s challenging behaviors, I’ll use pushing as an example as it was one of the most obvious and only really came from one source (but I’m getting ahead of myself).  So once we identified the behavior (B) we worked backward to the antecedent (A).  So what happens immediately before Elijah starts pushing me.  Well, typically I’m in the kitchen preparing dinner, putting away dishes or something else when he does it so I’m not paying direct attention to him.  So the thing he was trying to communicate with his behavior was that he wanted attention.  Even though my initial response was to tell him “hands down” and give him something else to do, this is still attention and reinforced the behavior.  So the consequence (C) of the behavior originally was that he received attention and was given something fun to do.

So in the case of this behavior the first thing we had to do was break the link between the behavior and his desired consequence.  So when he pushed me I ignored it entirely, not even so much as looking at him, but the second he stopped I immediately looked at him and said “Hi Elijah! Up! Elijah wants up!” and picked him up to give him a hug then I would direct him to something to keep him busy while I finished my task.  This was the easiest challenging behavior to get rid of and Elijah quickly replaced it with simply coming up to me and saying “up!” instead of pushing.

So that was an easy example, but what about hitting, another one of his challenging behaviors?  This one frequently reared its ugly head at times when I needed Elijah to do something he did not want to do.  That’s when we added in the second strategy.  I’ve not seen this one as an independent strategy before, it’s typically used with pictures and visual schedules, but in our case we just used the words.  The strategy is a First…Then strategy.  So for example, when I put Elijah in his car seat he would frequently hit me or try to squirm out of the seat to get a toy.  So I say “First straps, THEN toy” and repeat as necessary.  In Elijah’s case I’ve found that if I narrate the steps to putting on the car seat straps he waits more patiently for the toy: “One strap….the other strap…Snap straps!  One buckle….two buckles…All done straps, time for toy!!”

First then’s are really great when you can use a preferred activity as an incentive to get through an activity that your child doesn’t like.  For example, Elijah hates diaper changing.  There’s too much staying still in it for him to ever think it’s worthwhile.  However Elijah absolutely LOVES to wash his hands.  So we use “First diaper…then wash” most of the time.  There are some days when he’s really out of sorts or super hyper and there’s no way he’s going to cooperate for diapering no matter how many promises of hand washing afterwards he get.  On those days I actually do first thens for each of the steps of diapering and the “then” portion is a silly little hand game we play together.  So for example, “first diaper off, then alligator game!” “new diaper on, then alligator game!” etc…

The really important thing for first thens is that you absolutely must follow through.  You can’t use a first then to get a child through the hated activity and then not give the preferred activity.

We’ve now been using these strategies since July and I’ve noticed a significant improvement in Elijah’s behavior.  Additionally I myself feel like I have a set of tools I can confidently turn to which has eliminated the sense of helplessness I felt when these behaviors first manifested themselves.  Overall I feel like our participation in this study has been a true blessing and I hope that as results from the study continue to validate and improve the methods that these are published not only in the scientific literature but that soon there is a book published for us, the moms who live with these questions on a daily basis.  Then the moms who come after us won’t have to ask “where’s the book for my child.”

A whole lotta changin’ goin’ on ’round here…..


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Alternatively this post could be titled, “how many apostrophes can I use in one title” hahaha.  Anyhow as I sit here post breakfast with a nice cup of tea on the first morning I’ve really had for myself that didn’t involve driving all over town I thought, HEY I haven’t told anybody how Elijah has been doing in this crazy month and a half so maybe I better play catch up with the blog.

Seven weeks ago we set out for the big cross-country drive/move from Miami to Denver.  With Elijah and the cat in tow, my-inlaws in the car ahead of us, and a car bulging with snacks, entertainment, diapers and spare outfits we plunged forward despite our fear that we were setting out for a four day nightmare of continuous screaming from both cat and child.  Turns out we had nothing to worry about.  Elijah was a dream to drive with, completely different from our previous experiences.  Of course we still had frequent stops to change diapers, stretch our legs and grab a bite to eat, but it definitely was not the ordeal we were dreading.  We only had to break out the Elmo “Singing with the Stars” video twice throughout the whole trip.  So now we’re slowly getting settled in Denver.  Elijah is temporarily in one of the Jewish day schools here but will be starting at a school that caters to special needs children as of the end of August.  Seth started his new job and is truly loving the new hospital and I’m getting settled in at the store I transferred to and running errands like crazy trying to get everything set up in our new home.

So yeah, there have definitely been a few changes in Elijah’s life lately.  And one of those changes, which is probably partially a result of all the upheaval and partially the result of normal developmental changes, is that he’s throwing tantrums with much higher frequency.  I was pretty much at my wits end.  There doesn’t seem to actually be a book on the market that addresses discipline for toddlers with developmental delays.  There are plenty of books for older children with developmental issues, and plenty of books for typically developing toddlers and older infants, but nothing that addresses the unique combination of the the physical capabilities of a toddler and the mental understanding of an older infant.  I was honestly ready to apply to Ph.D. programs in developmental psychology just so I could write the stupid book myself.  But then I lucked out.

Back in December or January the National Fragile X Foundation posted a study on their website being conducted at the MIND Institute at UC Davis for children with fragile X over the age of 2 who weren’t speaking.  We were lucky enough to be chosen for the study and it turns out as part of the study one of the things they help with is addressing these challenging behaviors that typically result when a child doesn’t have proper communication tools.  We were just there last weekend for our very first visit and since beginning to implement some of these strategies I’ve already started to notice a turn-around in Elijah’s behavior.  I’m not sure how much I’m allowed to talk about before the end of the study, I will check in and find that out and definitely post if there’s anything I’m allowed to say, but the strategies aren’t anything wildly new, they’re just modifications of existing protocols that make them more relevant for Elijah’s age and developmental progress.  But it truly has been a blessing.  I’m not saying the challenges are gone, but at least I’m learning some tools to deal with them and don’t always feel quite so helpless.

The Child You Lose/The Child You Gain


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The Child You Lose/The Child You Gain.

I loved this entry. It’s one of those cases where somebody else said it way better than I ever could have. She’s much further along in the journey than I am, and obviously there are some difference between our two children, but this is a much more touching and “real” observation than the Holland story that makes its rounds throughout the special needs community.

By the way, I think I might be one of the few people with a child with special needs who actually likes that story. I’ve seen countless people complain that it trivializes the struggles parents go through, but personally I think the point of a metaphor is to make something that you can’t understand unless you’ve lived it a bit easier for outsiders to grasp and the Holland story does a good job of that. But that’s just my opinion and Phoebe’s entry is definitely a starker and yet equally beautiful view into the world.

via The Child You Lose/The Child You Gain.

A Call for Unity


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This was originally titled Genetic Discrimination, and is largely about that topic, however as I was writing I found myself inspired to move in a different direction, hence the change in name.

We are moving to Colorado in a little over 3 weeks for my husband to take a fellowship position.  Of course with Elijah’s situation one of the first things I did was review our insurance coverage.  I was extremely dismayed to discover that our insurance will not cover any of his therapies.  The insurance excludes therapies for everything except acute injuries from which there is a chance of recovery and therapy for individuals with Autism Spectrum Disorders, including PDD-NOS.  You might be surprised that Autism isn’t excluded, but through massive advocacy efforts a law was passed in Colorado that insurance providers were not allowed to exclude therapies for ASD.

This is where we run into trouble.  Fragile X is an autism-related disorder.  Somewhere between 30-50% (depending on which source you read) of boys with Fragile X are diagnosed on the spectrum.  Even those who aren’t autistic exhibit many of the same behaviors.  Elijah is an excellent example of this.  He forms extremely close caregiver relationships and can maintain some joint-attention tasks with adults (btw, for those of you who didn’t know, joint attention is a BIG BIG DEAL).  However he doesn’t form peer relationships at all.  Seriously, he’s been with the same kids for a year now and even when they say hi to him or call his name he won’t even so much as look in their direction.  It’s heartbreaking to watch.

He also has several self-stimulatory behaviors including spinning plates on surfaces and pushing the same button over and over repeatedly on a toy until you want to throw the toy through the window simply so you never ever ever have to hear the noise made by that button again.  He has also begun several self-harming behaviors including biting himself, smacking himself and head banging.  If watching him ignore his peers was heartbreaking I can’t even begin to describe the terror and horror that moves through you as you try to keep your precious child from harming himself.

He also has pervasive developmental delays.  In everything except Gross Motor he is currently testing at or below 12 months.  Gross Motor he has made it up to 18 months.  Physical therapy was his first therapy and the one he had the most frequently originally and it shows.  However the point remains, there are global delays including significant speech and communication delays.

Before genetic testing Elijah would have likely received a diagnosis of PDD-NOS.  (note: This diagnosis is actually removed from the DSM-V and is rolled in with the new broader definitions of Autism Spectrum Disorder which went into effect on May 17,2012.)    Elijah has the same symptoms, behaviors and therapy needs as many children with ASD and he actually is being tested upon our arrival in Colorado, and yet I’m left wondering why he should have to be.  With the same needs, why is the insurance allowed to discriminate because the cause is genetic instead of “unknown”?  It’s an employer based insurance so state law doesn’t matter in this case, but federal law does apply and the Genetic Information Nondiscrimination Act of 2008 (which took THIRTEEN years to pass!!) prohibits discrimination in health coverage and employment based upon genetic information.

The current recommendation is that children with unexplained mental impairment or developmental delays receive genetic testing, particularly if there are other incidences in the family history.  However, if insurance companies provide therapy coverage for the people with these delays that are of unknown origin, but which can be labelled as some for of autism but deny them for those of known genetic origin, why on earth would anybody agree to the testing?  This is the exact situation that the Genetic Information Nondiscrimination Act was meant to prevent!

I’m not a lawyer and goodness knows the text of the bill itself is just as convoluted and weighted down with definitions and caveats as one would expect of any piece of legislation passed in this country, but I strongly question the legality of coverage that is allowed as necessary for one group being denied on the basis of genetic information for another group.  Perhaps it obeys the letter of the law but it certainly falls short of the spirit.

I applaud the efforts of the autism community to raise awareness of this significant issue and the passing of laws in several states that prohibit insurance companies from denying coverage are a major victory.  The impact on families of developmental disorders including ASD is tremendous and I can tell you from personal experience that early intervention in Elijah’s case has made a tremendous difference.  He began therapies long before we knew the root cause of his problems.  His longest running, most consistent therapy has been physical therapy and this is undeniably the area he is strongest in.  You’ll notice I mentioned “most consistent” in there…we’ve already had several battles with insurance companies surrounding these issues and I truly look forward to the day when families who find themselves facing the sometimes overwhelming prospect of reframing their entire existence don’t have to add the stress of arguing with insurance onto the pile.

So for those of us whose children are not on the spectrum, or who just haven’t been evaluated because we don’t want to add one more label to weigh our child down with, we need to look at the struggles and victories of the autism community as an example, but we need to take it one further.  We shouldn’t have to advocate for one individual illness to receive coverage whilst the others get left behind.  Why should my friend whose child does not have a diagnosis of any sort, but has similar problems be any more or less eligible for services?  There is power in numbers and if we all figure out how to work together for the good of the entire special needs community; if every parent, grand-parent, aunt, uncle and sibling of someone who had grown up with these difficulties; even broader, if every person who has ever had to fight with their insurance company for a therapy necessary for themselves or a loved one….if we all joined together for common cause imagine the power to create change.  Just imagine.

Let me count the ways…


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According to the little bit of information I’ve been able to find about how children with Fragile X learn holistically, starting from the whole and moving backwards, instead of the sequential learning style where each tasks builds on the prior task which is how the majority of education in the United States is structured.  Almost all of the information I was able to find about fragile x learning styles is courtesy of the National Fragile X Foundation (www.fragilex.org) and this article which I think is also housed somewhere on the FragileX.org website, but which google found from the children’s hospital of pittsburgh website first.  Of course once I learned about the need for a different approach to learning I of course started looking up some of the resources mentioned in the article by Dr. Braden.  Imagine my surprise when I look up touch math and I am instantly transported back to the middle of my first grade year.  So now I’m going to take you on a brief history tour of my own educational experience.

I hate math.  I’m bad at it, it’s hard for me, and as someone who is usually good at every single solitary other academic subject it’s hard for me, psychologically, to be bad at this one.  In fact the only math I was ever very good at was geometry and the early stages of algebra…..honestly I used to joke it’s because Algebra uses a lot of letters and I felt like I was back in home territory escaping the stupid evil numbers.

My elementary math experience was almost as a whole torturous.  Addition and subtraction weren’t terrible due to the system mentioned below but multiplication and division were a nightmare.  You’re going to laugh at me when I complain about coming home with B-‘s and C+’s in the subject, but for a child who had A+’s (sometimes with extra +’s) in everything else, that B- was pretty tough to swallow.  Perfectionist?  Yep, I’m guilty.

Anyhow, the singular exception to my math torture was a brief interlude in the first grade.  I spent all but the first and last week of first grade in an elementary school in Rogers, Arkansas.

This particular elementary school taught a quirky form of math where all of the students had a number board taped to the top of their desks and each of the numbers had “touch points” illustrating the value of the number.  I’ve included a picture of the board below, but the ones we had did not have the dots labelled, the extra circles on 6-9 were more obvious and I don’t remember them being in different colors.  Basically it’s a really fancy way of counting on your fingers without using your fingers.  The thing is, it’s a highly visual way to do math, and it really connected with my brain.

To this day if you look at a column of figures I’ve been forced to add manually you will see little specks around some of the numbers where I’ve automatically counted using the touch points.  I honestly believe that if it hadn’t been for learning this in the first grade my math grades would have been substantially worse.  I really wish I had learned whatever tricks the system teaches for multiplication and division.  But anyhow, I never saw the system again and every single other person I’ve ever told about it (usually somebody who’s noticed the little specks around my numbers or who’s seen me adding) claims to have never heard of it.  So as I said, imagine my surprise when one of the methods of teaching being touted as potentially effective for the fragile x learning style is this quirky little math teaching style that I had so connected with back in the first grade.  Elijah is a ways away from math skills but I’m looking forward to seeing if this sparks the same connections in his brain as it did in mine.