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The Power of a Horse

Thru the power of a horse, my daughter is growing into a strong woman. She has learned the satisfaction of hard work as she has thrown bales of hay off a wagon in temperatures the Devil wouldn’t work in. She has learned how to control the direction and speed of a 1200 pound animal thru the use of her legs alone.

Thru the power of a horse, my daughter is growing into a confident woman. She has learned to pick herself up off the ground and try it again until she gets it right. She has reaped the rewards of swallowing her fears and trying things she never imagined she could – rewards that extend beyond any 95 cent ribbon she may receive.

Thru the power of a horse, my daughter is growing into a woman of compassion. She has become in tune to the behavior and habits of her horse and senses her needs. She knows when her horse needs rest, is hurting, or just needs extra love. She knows unconditional love.

Thru the power of a horse, my daughter is growing into a generous woman. I have watched her open her tack box to offer brushes and supplies to others in need. She has given up her hard-earned rest time to help someone else prepare their horse for show.

Thru the power of a horse, my daughter is growing into a woman of forgiveness. She has learned that animals have bad days too and that it’s okay because tomorrow is another day. She has encountered the inevitable poor sports and has shrugged it off, knowing she can only control herself and her own actions.

Thru the power of a horse, my daughter is growing into a graceful woman. She has bent and flexed with her horse as they have beautifully cleared rails and fences. She has held her head high and kept a smile on her face even when things have gone every way but right.

Thru the power of a horse, my daughter is growing into a woman of discipline. She has traded in easy fun times to work tireless hours to improve her skills. I have watched her make sure her horse’s needs were taken care of before her own.

Thru the power of a horse, my daughter is growing into a responsible woman. She has bypassed the latest toys and material possessions in order to provide for her horse. She understands the value of a dollar and that horses are an expensive investment where the return is far more valuable than anything money can buy.

Thru the power of a horse, my daughter is growing into a woman of perseverance. I’ve watched her push her horse thru the “scary monster” obstacles, while encouraging her with soft-spoken words. She has kept at the difficult patterns and the frustrating set-backs until she is satisfied with the results.

Thru the power of a horse, my daughter is growing into a smart woman. She knows when being safe is more important than pushing beyond acceptable limits. I’ve watched her problem-solve situations on the fly from horseback with amazing speed and common sense.

Thru the power of a horse, my daughter is becoming a woman with strong inter-personal skills. We have laughed and cried together thru the ups and downs. We’ve shared countless hours telling stories while braiding manes and tails until our fingers were bloody and sore.

Thru the power of a horse, my daughter is becoming a well-rounded woman. She understands that winning isn’t everything. I’ve watched her cry tears of sorrow into her horse’s mane, yet emerge from the stall even stronger than she was before. When she’s sick, she wants her “horse time”. When she’s happy, she smiles even bigger when with her horse. She has matured beyond her years, yet is enjoying her childhood….all thru the power of a horse.

Thru the power of a horse, my daughter is becoming a woman I am proud of. She is one tough chick who will be able to make her own decisions and hold her own with the best of them. Most importantly, she understands that memories and emotional health far outweigh anything money could ever buy.

I am proud to call her mine, just as she is proud to call her powerful horse hers.

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Step Away From the Shutter…

A life story can be told thru pictures.  You grab the camera (or nowadays, your phone) to capture fleeting moments so you are reminded of the moments that make life worth experiencing.  I know I get carried away taking pictures of the kids and everything they do. Thanks to the digital age, I no longer have shoe boxes full of glossy memories. Instead, I have an entire hard drive dedicated to my happy shutter finger.  As I go thru the literally thousands of pictures I have taken over the years, I can reminisce. Many emotions surface: happiness, nostalgia, sadness, excitement, the occasional embarrassment…some bittersweet.  As my life has evolved, some of those emotions have changed.  I don’t look at the same pictures the way I used to.  Some that used to bring me pride, now bring me sadness. I don’t regret those memories, I just reflect. Some pictures capture what I thought was the absolute best point in my life, only to be topped by subsequent “better moments”. I have snapshots of animals, friends, students, family members, and of course the kids. I have birthdays, holidays, sunrises, sunsets, sporting events, first days of school, sleeping and waking moments. All glimpses of life at that present time.

But as I look thru the megabytes, I am struck by the perspective. These are all moments I’ve captured to remind me of our daily life. Pictures taken selfishly thru my own perspective. I don’t mean selfish in a bad way, and it’s certainly not intentional. But, how many pictures do I share the frame in? Yeah, I hate having my picture taken – what middle aged adult doesn’t? But I realize now that I am leaving a photogenic trail of memories for my kids OF my kids. There aren’t many pictures with me included. The modest me says, “Awesome!”. The nostalgic me says, “What photo memories are you leaving your kids to look back on?” This became painfully clear when I searched for pictures of myself with my mom. I was shocked to only find ONE picture of the two of us alone together. I can’t go back and change that, and that breaks my heart, but I can ensure my kids never experience the same heartbreak. This is one aspect of memories I have complete control over – even if that does mean putting my selfish modesty aside. So, I’m going to do my best to  make sure I’m a visible part of our trail of photo memories, because the perspective isn’t about me, it’s about “us”.

To the moms and dads out there…don’t forget to step away from the shutter!

My intention had not been to play the game in the first place. Oh I knew eventually it would be expected of me to ante up, but I didn’t really know when I would make that decision to pull my chair up to the table. Before I knew it I was one of the few left on the sidelines. Many times I had been asked when I was going to join everyone else. It took a long time for me to decide I was “old enough” to play the game. I mean seriously, the stakes are pretty high and you play for keeps.

At the age of 25 and after 6 years of marriage I was officially dealt my first hand in this poker game called parenthood. I have to admit that I had an incredible hand in that first round. Everything was going along smoothly with the beautiful daughter we were blessed with. Maybe it was beginner’s luck or maybe I wasn’t such a bad player. Heck, maybe it was a little of both. Either way, I played the game well those first 5 years. I was having fun and maybe even getting a little cocky.

After much pleading and praying, we agreed to try another round. When it was time to go, the cards were thrown on the table and an alarming rate of speed.  Our little boy was brought into this world at lightening speed. I remember the realization that there wouldn’t be time for my blessed epidural and thinking I was truly going to die from the pain.  But when I held that sweet little boy in my arms, it was all so worth it.  I remember leaving the hospital thinking, “I can do this. I’m a pro now.” Little did I know that the rules ,and even the game itself, had changed overnight.

He was another easy child at the beginning, there was something angelic about his face. It wasn’t until we missed those first milestones that my intuition started overtaking my logical self. Why did he throw up every time he ate? Why didn’t he allow others to touch and snuggle with him? When was he going to crawl? When was he going to say his first word? Why did he sit and spin the tires on his trucks for hours at a time and never tire of staring at the swirling movement? Before I could figure out the rules of this new hand, I was unexpectedly thrown into yet another round. I didn’t ask to play this time and was terrified of the uncertainty since I hadn’t yet gotten the hang of this last round. It was that unexpected hand that really forced me to find a way to figure out what was going on though. Before we welcomed our third child, I had to find some answers for this one. Through several therapists and finally a DNA test, I was given the name of this latest game.  Fragile X Syndrome.

I remember sitting in the geneticist’s office crying in shock as she explained the diagnosis. She tried to comfort me by telling me I had no way of knowing so could not have prevented it. She painted a pretty bleak picture of a future with a child who would never be independent. After explaining the genetics behind the diagnosis, she asked if I wanted to test in utero to see if the baby I was carrying would also be affected. I remember her going over my options if we received a positive diagnosis. One thing she didn’t realize with me though, was that I was still in the game for keeps. I didn’t care what the outcome was, I was playing out the whole hand. When I was five months along, I learned that this round was going to be directed by that dangling piece of X chromosome again.

I’m a reader and am always looking for new ways to learn, which comes in handy when you’re learning a game you’ve never heard of before. I was determined to memorize every rule and trick there was. When this hand was forcefully dealt that June afternoon, I was prepared…I thought. Except noone told me that the rules aren’t static. They can change without warning. Just as I was finally getting the hang of dealing with a child who didn’t like to touch anything, yet was so loving and happy all the time, I was thrown into unchartered territory with an infant who couldn’t nurse or take a bottle without severe intervention and who was ticked off from the moment he took that first difficult breath. He couldn’t keep any food down, he only calmed briefly if held tight, and he flat out refused to sleep. Why did the rules and terms keep changing? How was I supposed to keep up?

I remember feeling hopeless and a lousy player. There had to be some skill I was missing and that’s why it was so difficult now. My struggles were becoming personal. The same game couldn’t change that much between two different hands, or could it? Looking back over the past seven years, I realize the game didn’t change and neither did the rules. I was the one who adapted. I don’t know when, but at some point I quit trying to figure out the “why’s” of the game, and just started playing it for what it was. There’s no re-deal and folding is not an option. Somewhere along the way, I accepted the hands I had been dealt and decided to play them the best of my ability. I’m certainly not the best player at the table. I’ve found it difficult to maintain a good poker face  during times of self-pity, sleepless nights, quick exits from restaurants after one or both of the boys gagged and lost their meals all over the place or sitting through endless therapy sessions and filling out mountains of paperwork. It’s been downright impossible to even fake a poker face during my youngest’s violent rages, including one that fractured my eye socket and the many bite marks and bruises I’ve been left with, along with navigating the world of epileptic seizures with my middle child. Have I had my moments when I’ve wanted to quit, throw up my hands and say this game isn’t for me? You bet. I still have those days, but then the small victories are so huge I am reminded why I continue to play the game.

The incredible thing about this game called parenthood, is that there is no one typical winner. Although the game lasts a lifetime, there are so many victories along the way that make all of the setbacks seem small and trivial. I may never be looked at as a star player, and I’ve come to accept that. I know that I am playing this game to the best of my ability though. The rules may seem to change day to day or even moment to moment, but the beauty of learning this game as I go has been learning that it’s okay not to have the answers or even all the tricks. I may not have chosen this particular game, per se, but I’ve learned to go with the flow and play each card as it’s dealt. Looking back, I wouldn’t change my past cards for anything. They’ve made me who I am today, the good and the bad. I’m in it for the long haul and look forward to the future victories it holds. Game on!

Sacred Underwear

Now wipe that condescending scowl off of your face that says, “Too much information!”.  Stick with me here and I think you will have a whole new appreciation of your underwear drawer – especially if you’re a mom!  Today I asked myself at what point in my life as a mother/wife did I lose all privacy and possessions?  I fight the privacy battle every single day – no matter where I go there is always a child, a dog, a husband, or all of the above on my heels.  Some days I ignore it better than others.  But today it dawned on me that I really have no possessions anymore either…

Some of my naturally unruly curly hair went straight today (due to my constant stress induced running of my fingers through the top of my hair), so I went looking for my curling iron to do some damage control.  I would like to say I was shocked it wasn’t where it belonged, but that would be a lie.  Having a daughter who thinks she’s already a teenager, I knew to look in her bathroom first.  I didn’t find my curling iron BUT I did find my hair dryer, flat iron, hairspray, favorite lip gloss, perfume, lotion, and even my anit-wrinkle night cream!  What does an 11 year old need with my night cream?!

Next I went looking in the guest bathroom. No curling iron there either, but I found my hair clips that keep walking away.  What about the boys’ bathroom? No curling iron but one of my screw drivers.  Art’s bathroom had 3 pairs of finger nail clippers to offer – which is funny considering I’ve been asking almost daily where all the fingernail clippers disappeared to.  I looked in my closet with no avail, but did notice the gaping open section on one shelf where one of my Vera Bradley overnight bags used to reside.  As a last ditch effort, I looked in Art’s closet – stranger things have been found in even more odd places so it was worth a try.  No luck there either, but I did find my Purdue hoodie.

I am convinced that my belongings make up the Salvation Army of the household. Cheyenne needs some sort of beauty item – go take mine. The boys need some belts to use as reins on the chairs they turn into horses – go take mine. Art loses a button off of his police uniform or can’t find a keeper for his duty belt – go take one of mine. Dogs need a shoe to chew on – please help yourself to one of mine.

My curling iron is officially MIA, which doesn’t really matter now since I have pulled on my hair so much it’s now a straightened ball of fuzz.  I finally sat down exasperated at the mobility of my possessions.  Is nothing sacred any more? Ah yes, there is one thing that I can always find exactly the way I left it in the exact same place it always is…my underwear drawer.  At least I know that there are a few possessions of mine that no one else will need or want – and quite frankly, if they ever do then I don’t want to know NOR do I want them back! I’m not sure if I should laugh or cry at this revelation. Oh well.

Now where is my other oven mitt…

You always hear how people are afraid of change or how no one likes change. Why is that? Is it the fear of the unknown? But doesn’t everyday start with unknowns? I know that when I wake up in the morning I think I know what the day may have in store for me, but nothing is guaranteed. The only thing that is always constant is change so why is it so hard to embrace?

I’ve certainly had my fears awoken through the potential of impending change. I have even spent days obsessing over the what ifs and the why nows that go hand in hand with changes. It’s been eating at my soul. Some days the fear has gripped my heart with an iron fist making me think it would truly kill me. Other days it just lingers in the back of my mind like that splinter in your finger that you can’t see.  Every once in a while you rub against the spot just right and send pains shooting through your whole finger, but you can’t seem to pinpoint where or what it is, you just know that it’s there.

Our past experiences make us who we are today. That includes the good and the bad. Looking back I can identify many changes in my life. Some were bad but many were good. In order to put my mind at ease lately, I have had to change my perspective on how I look at change. It’s important for my own well-being to remember those good changes in my life, yet that unknown factor continues to creep in like hot steam from a shower, slowly fogging up the glass I am trying to see through.  As I have searched for a way to change my perspective over the inevitable, I received help from an unlikely place: Mother Nature.

I began to think about how the seasons change every few months.  We witness some pretty big changes as the seasons progress.  We know the weather will not stay the same and we know nature itself will make some pretty drastic transformations.  So why don’t we hold any fear regarding those changes?  It’s  not because the unknowns have been removed.  We may have a general idea of what to expect in the upcoming months, but we still don’t know for sure.  As the vibrant colors of Fall die into the cold grey skies of Winter there are still a lot of variables that can have a vast effect on the outcome of the season.  How do we know this isn’t going to be the worst Winter in history?  It could bring massive blizzards and heartbreaking devastation.  That possibility always exists, yet we aren’t afraid of Winter’s impending entrance.  We can find comfort in our memories drawing from past seasons and make assumptions based on those experiences.  As I look back on the changes throughout my life, I have mainly good memories.  I’ve decided to use those memories to make the same type of assumptions regarding future changes in  my life.  Much as I look forward to the changing seasons, I am going to start looking forward to changes in life.  Yeah, the possibility of expectations not being met will still exist, but the chances are greater that I will be left with good memories someday.  Bring on the next season…and thanks Mother Nature.

A Saltwater Education?

If you’re lost at sea without proper resources, your chances of survival are slim.  I never imagined that I would see my classroom as a boat full of cast-aways just trying to survive.  I’ve spent close to 15 years in the classroom and have seen many changes in education – some that are good and some that aren’t so great.  I don’t teach the way I did when I started.  I don’t even teach the way I did a year ago.  Standards have increased in difficulty and expectations have become greater as well. Classes that were considered advanced level (like Algebra 2) several years ago are now part of the minimum requirements to receive a high school diploma.  For the general population, these changes have not only been good but necessary.  I don’t teach the general population though.

I look at my teenage students, all who struggle with severe learning disabilities or autism or emotional disabilities, and I worry if they are lost at sea.  These are the students that don’t have the academic or social or emotional ability to keep up in the regular classroom.  As the general population moves forward in bigger and faster boats, my students are left floating in a make-shift raft just trying to keep their heads above water.  There are so many rewards for successful students which provide valuable incentives and motivation to meet the increasing demands of high school.  Students can get college scholarships, better jobs, and recognition.  What about those students in my classes though?  Most of my students will not receive a high school diploma because they are unable to meet the minimum requirements.  They are aware of this and yet they are expected to show up everyday and learn what they can.  I struggle at teaching them life skills that will aid in their survival in the adult world, pushing and challenging them for their best but knowing that for some, their best still won’t be good enough outside my door.

This year we’ve heard of many new expectations for us as teachers and for our students.  While reflecting over these upcoming changes I couldn’t help but try to find a way to describe what this may mean to my students.  I am not a science expert or even a science enthusiast, but some parallels began rolling around in my mind.  I was reminded of the time many years ago when as a student I studied saltwater’s effects on the body.  Previously I had never understood how someone could be lost at sea, surrounded by all of that water, and yet still die of dehydration.  My recollection of that lesson is that the human body can’t use the saltwater for hydration.  Salt dehydrates the body.  The more salt that is consumed, the more fresh water is needed to counteract the salt’s effects.  You can drink ocean water all day long (if you can deal with the taste) but your thirst will only increase.  Your body will quickly become dehydrated and eventually your organs will begin to shut down.  If intense interventions aren’t made quickly, you will eventually die.  Is this what learning is like for my students?

Are my students lost in the sea of education?  Are their only options the saltwater of increased expectations?  Their brains are not like the brains of the other students.  They can’t “metabolize” information like other students.  Yet they must continuously consume concepts their brains can’t process.  The more they take in that is beyond their comprehension level, the further behind they get.  They’ve had years of disappointment and “failures” in the eyes of education.  Have their minds and attitudes begun to shut down and is their learning dying a slow death?  Are all of these increased expectations dehydrating their brains of the ability to process what they did have the ability for?  Instead of helping their brains sustain learning and thrive, are those resources being robbed to combat the incoming information that the brain can’t make sense of?

My students have so many abilities and can experience success in so many ways, but because these abilities are not “up to par” with the mainstream, I fear they have been perceived as castaways.  They’ve been left to float way behind the increasingly powerful speedboats the rest of the students have been equipped with and are able to navigate.  They’ve been left to survive in a world of saltwater information.  They aren’t provided with the necessary resources and interventions to be able to keep up.  I’m not even sure what those resources would need to be in order to equalize the effects.  I only know that I see students who have learned to accept failure and have started to give up on educational survival.  I don’t have the answers and it’s heartbreaking to watch valuable individuals be stripped of their worth due to an outside mold they will never be able to fit into.  Look at the research and you will see that even if they can survive outside that mold, they are not thriving.  They will always be surrounded by society’s saltwater.  There has to be a way to teach them how to modify that saltwater on their own in order for them to thrive.  No area of brain science has been able to do that with 100% success…yet.

If I understand earthquakes correctly, a fault line can exist for years but never create an actual earthquake. But the plates could shift, without any prior warning, and create an earth-shattering earthquake. There’s no concrete predictability of subsequent earthquakes, although probabilities can be scientifically presented.  Not all earthquakes occur at maximum power, sometimes they are just tremors and many times there are subsequent aftershocks that gradually lose power. This basic understanding of earthquakes is a spot-on description of life as a Fragile X mom.

You see, my faultline is one of my X chromosomes. The X that has been passed down generation after generation was an unrecognized faultline in my family’s lineage. Looking back there were signs along the way that the genetic plates were not in sync, but it took an earth-shattering earthquake to provide proof and explanation. My world was shook to its very core on December 21, 2004 – the day we received the Fragile X diagnosis for our then two-year old son, Colt.

After receiving the diagnosis, I went thru the typical stages of grief that a parent experiences upon learning that their child has a disability. I couldn’t believe such a permanent label had been placed on my son, there had to be some mistake (Denial). After the geneticist explained how Fragile X was passed thru carriers and eventually can show up in an individual as a full mutation, I couldn’t understand why my child had to be the first time it showed up in my family (Anger).  As a special education teacher, I knew I could offer my child more educationally at home than most. I vowed I would do absolutely everything to ensure he learned as much as possible. In my mind I believed that if I gave everything I had then he would eventually overcome the disability (Bargaining).  Of course it didn’t take long for me to realize and accept that I could not “fix” him. By this time I knew that the baby boy I was due to deliver in a few short months also had the full mutation of the gene. For awhile I felt hopeless and extremely guilty. After all, it was my gene that caused this so it had to be all my fault that I couldn’t give my husband the perfect sons we had envisioned (Depression).  It took a long time for me to suck it up and turn my focus on providing what I can for my boys. I always knew I would love them unconditionally, but I began to reach out to the Fragile X community not only to receive support, but to offer support as well (Acceptance).

Individuals who experience a natural disaster such as an earthquake often go through the same stages of grief.  Research will tell you that not everyone experiences grief the same way or the stages in the same order.  This brings me back to my earthquake analogy.  Every tremor or aftershock presents itself as some behavioral or educational setback. Sometimes its the way I observe others reacting to or treating the boys. Many times it’s hearing someone use the word “retarded” in a joking way. Each instance sends a tremor clear to my soul. There’s no predictability to the tremors. Aftershocks are somewhat predictable in the sense that I know I will experience some of those stages of grief due to annual case conferences and missed milestones. And yes, those aftershocks do lesson in magnitude gradually, but they still exist and I imagine they always will.

But even after natural disasters, there is always the wonderment and miracle of new growth. This may not be the life I had envisioned, but that fault line buried deep within my DNA has made me the person I am today.  My two boys who carry that gene within them, along with my daughter who may decide to find out someday if she carries it as well, have all touched many lives. I see my three perfect kids as the ripple effects you can observe from an earthquake or any natural disaster.  Events such as those tend to bring out the good in other people as they offer assistance, which in turn improves humanity.  What starts as a “disaster” can actually turn into a blessing for many.  I can only hope and pray that my “blessings” will continue to bless those they come in contact with everyday.  A fault line may be permanent within the Earth’s crust, but it doesn’t rock your entire world nonstop every day.  You just know it’s always there beneath the surface, you accept its existence, you adapt to its capabilities, but you continue to live your life one day at a time.  In the grand scheme of things, that’s really all we have is one day at a time, right?

Playing the hand I’ve been dealt – Jen Kalb

‎”Likes” to hear her retards laugh. “Likes” spending time with and playing with with my retarded sons everyday. Gasping with disapproval? ME TOO. Just as I do everytime many of you “like” the FB page “singing like retards w/your friends” &/or “ur knight in shining armor is a retard in tin foil” and just as I gasp everytime I hear someone use “retard” in conversation. This hurts. Please step up & put an end to this being acceptable.

You HAVE to understand that MILLIONS of us love someone with an intellectual disability and this IS personal to us. We all understand that YOU are not thinking of our loved ones when you use the word “retard” or “retarded” but we do each time we hear it. EVERYONE is one accident or one genetic malfunction away from being disabled. Have respect for everyone around you. Do your part to help change the world – to a kinder, gentler place that accepts everyone, INCLUDING my babies.

Calling my boys “retards” in this post is one of the hardest things I have ever written, but hopefully it is bold enough to get people to stop and think about the words they use and the attitudes they portray. Put an end to this being acceptable!

Dear (Sympathetic Parent/Impatient Waitress/Clueless Jackass):

I am glad you were able to witness one or both of my sons

  1. Flap their hands wildly
  2. Have a total meltdown
  3. Throw up everywhere due to an over-sensitive gag reflex
  4. Not participate with the other children

It does not matter what disabilities my boys have, but there are thousands of children you will come in contact with at some point in your life who may have

  1. Autism
  2. Cognitive Impairments
  3. Speech or Language Impairments
  4. Physical Disabilities
  5. Attention Deficit Disorder
  6. A combination of any of the above and/or other disabilities

Your reaction was not unlike others I have seen before.  I saw you

  1. Look away in embarrassment
  2. Pretend to ignore us while making sideways glances in our direction out of the corner of your eye
  3. Give me a look of pity
  4. Scowl angrily in our direction

Your reaction communicated to me that you

  1. Felt sorry for me and/or my boys
  2. Were embarrassed for me
  3. Were disgusted that I could not control my child/children better
  4. Had no idea how to respond so you pretended (rather poorly) to not notice

You need to understand what your reaction does to a mother such as myself.  When I saw your reaction I felt

  1. Self-conscious for myself and my child/children
  2. Uncomfortable and unwelcome
  3. Pissed off at your condescending holier-than-thou opinion of my parenting ability
  4. Embarrassed for your obvious lack of tolerance

It is not realistic/possible for me to

  1. Hide from the world in my home all the time
  2. Immediately leave the area for the benefit of your comfort level
  3. Control or “fix” my child
  4. Protect you from every possible reactive scenario my boys may encounter

There are some issues that possibly you are not fully aware of, such as

  1. My child has just as much right to be in the same area that you are
  2. There are ways you can include my child at his level
  3. There are laws that state my child/children are no less a human being than yourself
  4. My child/children have feelings

In the future, a more appropriate reaction would be to

  1. Start a conversation with my child – even if you can’t understand him
  2. Offer a way for him to be involved in the present activity
  3. Ask me how to best interact with him
  4. Take an interest in what he is currently doing

I understand you may not have much experience with individuals with special needs.  I do not blame you for that.  What I do blame individuals for is

  1. Refusal to accept everyone for who they are
  2. Not correcting your own children for treating others inappropriately
  3. Continuing in ignorance because you feel it has no effect in your world
  4. Thinking you are “safe” because you don’t have a child like mine

I feel the need to point out to you that disabilities affect everyone’s life at some point.  It may not be you or an immediate family member who is directly affected, but there is always a trickle effect.  Remember, a disability can be caused any time and by many things, such as

  1. A genetic mutation no one has any control over
  2. Environmental factors
  3. An auto/work/sporting accident
  4. A side effect of a health problem

I hope you take my words and apply them as you see fit such as by

  1. Changing your reaction when you are faced with similar situations
  2. Becoming even more informed
  3. Educating others to increase tolerance
  4. Or just continue to be an inconsiderate jackass who thinks nothing applies to you

Sincerely/Yours Truly/Kiss My Ass,

Jen Kalb

Dear [Family Member/Friend/Relative Stranger/Jackass],

I’m sorry my five and/or seven-year-old son disrupted your…
a) beach vacation.
b) trip to the grocery store.
c) soccer game.
d) restaurant meal.

As you may/may not know, my sons have Fragile X Syndrome. It is an inherited form of cognitive impairment which also come with a form of autism which impacts…
a) how they communicate.
b) their gross motor skills.
c) their fine motor skills
d) their sense of smell, taste, and hearing.
e) their ability to learn from their mistakes.
f) all of the above.

I’m sure you noticed one or more of these when one or both of them started screaming during the…
a) outdoor wedding.
b) estranged uncle’s funeral.
c) family photo shoot.
d) Sunday church service.

I can tell from your comments that you think I’m…
a) too strict.
b) too smothering.
c) too permissive.
d) not spanking enough.

In the heat of the moment, though, it was hard to hear your…
a) self-serving psycho babble.
b) succinct analysis of my flaws.
c) concerns about the state of my [marriage/mental health/recent weight gain, etc.].

Incidents of the type you witnessed used to happen in our family about five days week. This is why we now employ the services of (including, but not limited to)…
a) a specialist in pediatric neurological development.
b) a speech-language pathologist.
c) a special education teacher.
c) an occupational therapist (who in addition to weekly appointments currently has us brushing arms, legs and torso up to 5 times/day).

We have learned that their crying and wailing can be due to…
a) over-stimulation.
b) under-stimulation.
c) sibling rivalry.
d) anxiety.
e) who the hell knows.

In addition to your event, one or both of them have stormed out of…
a) Sunday School.
b) Movie theaters.
c) School events.
d) all of the above.

For the record, they have never stormed out of their bedroom. They put themselves in the corner when they grow scared and overwhelmed. One of us has to physically restrain one or both of them when they begin banging their heads against the wall or floor.

We no longer take them to…
a) movies (too loud).
b) sports practices (they can’t keep up with other kids).
c) hiking (when they stop halfway through we can’t get them back to the trailhead).

I’m sorry our five-year-old turned down your offer of…
a) yogurt.
b) hot cereal.
c) crackers (except Goldfish).
d) cheese (except plain slices).
e) salad with dressing.
f) cooked vegetables.
g) soup, fruit, or meat.

He won’t eat them at home either. He used to adore bananas, peanut butter sandwiches, and tuna fish. Not anymore. He would be happy to survive on cheese slices and popcorn alone.

In the [days/months/years] since the boys’ diagnosis and the [years/decades/lifetimes] before that, I have been trying to figure out my beloved children. Things have definitely improved, due to…
a) medications (they may cause permanent metabolic damage, but lessen the temper tantrums).
b) a change in our expectations (if either needs help putting on underwear, I’m going to damn well dress him).
c) what I hope (keep your fingers crossed) may be maturation and growth in the structure of his brain.

Unfortunately, they are still largely unable to…
a) make eye contact.
b) understand that others have feelings.
c) plan ahead.
d) do schoolwork on his own.
f) stop smearing their fingers compulsively in any food on their dinner plate.
e) refrain from blurting out every random thought either has about poop, snot, boobies, etc…

So forgive me if I seem…
a) bitter.
b) frightened for their future.
c) exhausted.

It’s only because I am.

a) Yours truly,
b) Love,
c) So screw you and your ill-informed advice,

Jen Kalb