Being retarded is no laughing matter!

It was the spring of 2007, Sydney was 15 months old at the time, when the word Retarded first crossed my mind.  I have a vivid memory of sitting on the floor in the corner of my office and frantically Googling all of Sydney’s symptoms to determine whether the R word would pertain to her.  I had been doing this on and off since she was 6 weeks old. On this particular day, I sat in front of that computer for hours when I finally ran out of things to Google.  I still had no answers to explain her delays and I had basically hit a wall.  I remember feeling exhausted and defeated.  I sat there feeling confused.  I thought how in the world was it possible for one child to have so many little things wrong with her yet no one, not even Google, had any answers.  Then it dawned on me, maybe the explanation for all of her delays, all of her quirky behaviors, and all of her missed milestones is mental retardation.

I know what you are all thinking.  How politically incorrect and horrible of me to think such a thing.  However, mental retardation is a real diagnosis.  It is not just what we say when we want to make fun of someone, or belittle someone.  It is actually a legitimate medical term used to describe a delay in growth.  The word retarded simply means a lack of development.  On that spring day in my office the realization hit me like a ton of bricks.  Suddenly, all the pieces of this puzzle began to come together.  In that instant I realized I already knew what was wrong with my daughter and suddenly that word, retarded, took on a whole new meaning. 

When I was a kid the word retard rolled off my tongue like any other word.  I used it in numerous situations never giving a second thought as to what it actually meant.  I called myself retarded for doing my homework wrong.  I called my friends retarded for acting silly or crazy.  It was such a perfect word to describe unusual situations.  The reality was that I never used the word correctly.  My growth and development was never delayed and my friends and I were fortunate enough to never have our brains deprived of oxygen or have any vital pieces missing from our DNA.  We were not retarded in any way; we were simply being weird, careless, ridiculous, insensitive, or downright thoughtless, but not retarded.

Several months later I learned of my daughter’s diagnosis of SMS and received confirmation that she was, in fact, mentally retarded.  Although I already knew that her brain had suffered some significant delays in development it was still hard to hear with certainty.  A word I so carelessly threw around as a child and even as a young adult would now haunt me for the rest of my life.  I no longer find any humor in it and it stings every time I hear it. Shame on me for needing a life-changing event to appreciate how hurtful this word can be for families who struggle with this everyday.  Shame on me for being so unaware of its true meaning and shame on me for not realizing how truly devastating mental retardation really is when it is more than just a word. 

I have learned much since the spring of 2007 and I will share some of that with you.  Mental retardation is a life sentenced to a world filled with special accommodations, limited possibilities, assisted living, and missed opportunities. Being retarded is not funny; in fact it is really hard work.  Individuals who suffer from this actually work 100 times harder than those who don’t to accomplish the same thing.  An individual with mental retardation never gives up and they never give in.  They have an unwavering determination to feel accomplished.  They love unconditionally and never judge anyone for their shortcomings.  They find no joy in belittling others and only recognize the beauty in them. 

I am tired of hearing this word in jest and I am sad to think of my daughter as something to make fun of.  I can’t change the past or make up for all the times I probably hurt someone by using it but what I can do going forward is try to help others understand what I learned the hard way, that being retarded is no laughing matter.

 

If I only knew then what I know now…A note to my former self.

Dear Jen, (September 2007)

I am sorry to hear about Sydney, Her diagnosis must be quite a shock.  There was no way you could have anticipated this and absolutely nothing you could have done to prevent it.  Knowing you as well as I do I am sure you are frightened and overwhelmed right now.  Your fright/flight response is in full force and you are trying to figure how you can flee from this devastating situation.  At the same time, I am certain that you are preparing to stand and fight.  Here is what I can offer you having been there myself.

The first and most important thing you can do is to allow yourself to grieve.  Cry hard and cry often.  It is cleansing to both the mind and soul.  Choose your closest and most trusted friend to do this with because there will come a time when you will prefer that others do not remember you this way.  You have a very long road ahead of you and will need to be perceived as strong for both Sydney and your family.  So protect your vulnerabilities.  Once you have gone through that first (because there will be more) round of crying start talking.  Talk to anyone who will listen.  It will keep your mind busy and your time occupied so that you don’t succumb to the hopeless thoughts that are inevitably in your head.  Trust me that you want to avoid those dark thoughts until you have at least recovered from the initial shock.  By talking to others you will slowly learn what is needed to begin an action plan.  People love to share their experiences and you can learn from them so listen even if they say things you don’t want to hear.

The next step involves an overall needs assessment.  This step will be trial and error and may take years to fully fine tune but it is critical to figure out what you need, what Sydney is going to need, and what the rest of the family will need.  The transition to a life with special needs is rough so make those needs a priority in your new world. The health and wellness of your core family is vital to surviving this profound detour in your life.

Next start to build your own personal support team.  Determine who will be able to go the distance with you because the road will be long and arduous.  Times will get ugly, they will get messy, and there will be moments when you will want to leave it all behind.  You need someone to make you realize just how strong and powerful you are, not someone saying,  “I can’t even imagine” but someone who says, “get back in there and keep going”.  After all of this has been put in place and you have built your foundation, you will next become an expert on her diagnosis.  Although you might not believe it you will find yourself empowered and inspired by how much you have learned about the syndrome and yourself.  At some point, you will feel like you have choices in your life again.   A new “normal” will appear and with the support of this new life you have built you will begin to venture out into the world again.

The final stage will bring a renewed sense of hope and it has potential to lead you to many new avenues in your life.  In the immortal words of Dr. Seuss “oh the places you will go…” New doors will open for you and you will meet many new and interesting people.  You will learn the true meaning of taking nothing for granted and you will live your life by a new creed.  You will have a genuine appreciation for differences and begin to care about people in a whole new way.  You will experience setbacks along the way (everybody does…) but your emotional and physical strength will surprise you.

As you make your way through your new world  make sure you keep this in mind, you are now a warrior.  You have fought long and hard and have not only survived but thrived.  There will be numerous battles along the way but if you stay focused on the important things in life and avoid getting side tracked by naysayers and self-doubt and pity; I promise you will win the war (the war to live a happy life).

Your loving and supportive self who has lived it and is surviving,

Jen (December 2013)

“Strength is a matter of the mind made up”- John Beecher

This Sunday I will be running my first marathon in an effort to raise money for The Smith Magenis Research Foundation.  SMSRF is a 501(c)(3) not for profit organization that I co-founded in June 2010.  Our mission is to support research to improve the knowledge and understanding of SMS so that viable therapeutic options can be developed to improve the quality of life of those with SMS. For further details about the syndrome please check out my blog at www.strengthforsydney.org/what-is-sms/

I remember September 5, 2007 like it was yesterday.  It was the day I discovered that my daughter has SMS.  I felt paralyzed and overwhelmed by the severity of the disorder.  But more than that I felt alone.  Since no one I knew had ever heard of it, I felt stuck.  My options were unclear and I began to feel trapped by the limitations this diagnosis had put on both Sydney and our family.   I had no idea what to expect and as a result I lived in a state of fear.

For the next few months that feeling of paralysis controlled my life.  Sure I moved everyday, but only because I had two other children that needed me, otherwise I remained preoccupied by my fears and exhausted by my despair.  Slowly but surely my inertia was consuming me and I realized that I needed to start moving again or this diagnosis was going to destroy me.  Pre-SMS I lived a very active lifestyle and exercise was a huge part of it so I thought if I could force myself to re-engage in some kind of activity everyday that slowly my life would begin to move in a forward direction.   However, I simply did not have the emotional or physical strength to do it.  I had lost a great deal of weight, my sleep cycle was off and I felt an overall weakness in my body and soul.  I actually never appreciated how exhausting it was to feel sad.

I don’t remember exactly when but one morning I literally forced myself to step back into my old routine.  The one I had before the diagnosis.  I made a conscious effort to eat and then I drove myself to the gym.   I continued with this routine for the next few years while simultaneously coming to terms with the new challenges in my life.  I now viewed exercise as a stable force in my day and sure enough I began to heal.

As time passed too many obstacles and too many questions remained unanswered about SMS.  I was at the mercy of a disorder that was so rare and offered me very little in the sense of a real direction or future.  An organization dedicated to funding research for SMS did not exist.  My fear of the unknown was stronger than my fear of failure and it was then that I knew we needed to create a foundation to advance our knowledge of this complicated syndrome.  I understood that we were entering into unchartered territory and it would not be easy but I felt a strong need to take on the task.  To learn more about the SMSRF please check out our website at: www.smsresearchfoundation.org  

A pattern formed in my life.  I found myself looking for challenges in order to either distract me from the pain or to help me to feel that forward momentum in my life.  Either way it kept me from wallowing in my own self-pity.  It led me away from doubt and hopelessness and into limitless possibilities and expectations.  I no longer felt afraid of what I did not understand instead I found myself saying, “Bring it on, and let’s see if I can do this!”  And it was this new attitude that led me to running.

I always admired runners and always wanted to be one.  Many of my friends were runners and it was something that I always assumed I would never be able to do.  I grew tired of accepting the limits I put on myself and one day I decided to try it.  I ran to the end of my block and every ounce of my body hurt and I came home.  The next day I ran a little further and so on…  I was determined to be a “runner” and it quickly became something that I needed to do.  I focused a great deal of time and energy on running and although I met many obstacles and limitations along the way I kept with it.  Running offered me a chance to recover, a chance to focus on myself and my needs and a chance to rebuild my spirit.  It was a challenge to face everyday and I looked forward to meeting it.

On Sunday November 17, which also happens to be global SMS awareness day, I will take my running to the next level and run a marathon.  It is a perfect test of endurance and determination and a symbol for how I live my life.  I will not be defeated by special needs and although everyday I face challenges, when the day is over I feel good that I persevered.  The most important thing I have learned from being faced with something less than ideal in my life is that movement (of the body and mind) is the key to survival. 

On Sunday, the one thing you can be sure of is that while I am running my 26.2 miles, I will without a doubt be running past my fears through my limitations and beyond my expectations.

Strength is a matter of the mind made up…

Have a little faith…(I may just do better than you expect)

The other week I received an e-mail from school regarding Sydney and her very rough afternoon.  This was certainly not the first time I received such an email and I accept that it will not be the last.  I am not entirely sure why, but this  time it hit me harder than usual.  It was a beautiful day and I remember feeling particularly peaceful at that moment.  I read that email and it literally knocked the wind out of me.  I have written before about the roller coaster pattern of emotions associated with SMS.  One moment things are looking up and the next we are in a difficult place dealing with outrageous behaviors.  Sydney’s mood can change quickly and as a result so can mine.  Over the years this pattern has taken its toll on me and can make it very difficult to truly relax.  My only recourse during these moments is to have a little faith that these episodes will pass.

Sydney has a disability that profoundly impairs her ability to regulate her emotions.  She suffers from significant anxiety and impulsive behaviors and this combination can result in some very primitive and dysfunctional episodes that can leave individuals working with her quite overwhelmed. There is a part of me that wants to share the specifics of these incidents but there is also a part of me that desperately wants to protect her dignity and keep some aspects of her life private.  I want people to understand SMS and how it affects the interactions these children have with their world but I struggle with my need for people to see Sydney as more than just a collection of outrageous behaviors.  Maybe I need more time or maybe I will never share those horrid moments with you, but for now suffice to say that SMS behavioral episodes are very difficult for a parent to see and share.

Sydney completely decompensated that day and the school was left to pick up the pieces.  As a mother, it is hard to allow someone else to care for your child during difficult times.  You expect to be the one who solves all their problems and protects them from themselves or others when needed.  As a parent of a special needs child, you must learn to trust enough in other people and have faith that they can and will manage these difficult episodes.  It simply feels too unnatural to sit back and allow someone else to care for your child, however, if I want Sydney to enter into mainstream society then I have to let go and let others do their job.  In any event, after reading the email, all I did was wait until Sydney returned home to see for myself how she recovered.

That day I was plagued by feelings of hopelessness (the pity party invitations were being mailed…). I felt that we were destined to be in this awful behavior cycle and I could not see a viable way out.  Intellectually, I recognize that she will always have bad days but in those dark moments it is very easy to lose faith and not recognize that they are often followed by good ones as well.

Interestingly, Sydney came home that day and she was all smiles.  There was no sign of distress and in fact, she was in an exceptionally pleasant mood.  She never mentioned the episode at school.  It is unclear whether she lacks the cognitive ability to recall such events or if she actually just forgets about these episodes altogether regardless, she certainly does not dwell on them like her mother.  As her mood improved so did mine. I followed Sydney’s lead and the day brightened for us both.

That same evening I heard a song entitled have a little faith by John Hiatt.  I have heard this song many times before and it always resonates with me and brings a sense of peace and comfort. I suspect it is mostly meant for couples and is a popular wedding song. However, this time the song took on an entirely different meaning and I realized that these lyrics could contain a conversation that Sydney and I would have if she could effectively communicate her thoughts.

“When the road gets dark

And you can no longer see

Let my love throw a spark

Have a little faith in me”

The reality of SMS is that these “up and down” behaviors are a hallmark of the syndrome.  It is extremely difficult to accept and adapt to and I know it causes Sydney tremendous distress.  It is also hard to find comfort in your own skin if one minute your emotions are intact and the next they are a shattered mess on the floor. It is this particular aspect of SMS that I find to be the most debilitating and why I focus my energy on funding research to find therapeutic interventions to help alleviate the behavioral component of this complicated syndrome. For more information about our research efforts check out our foundation website at http://www.smsresearchfoundation.org

Watching my daughter struggle with these erratic behaviors is painful and remaining confident that they will pass is a challenge.  But when I see her smile and her warmth return after an unpleasant episode it gives me faith that I can do the same.  Because of her I truly believe that there is a light at the end of every tunnel and I am slowly learning to enjoy the light when I see it.

“And when your back’s against the wall

Just turn around and you will see

I will catch your fall

Have a little faith in me”

I have come to realize that together Sydney and I seem to navigate our way through this crazy emotional maze.  We are both oblivious to what lies ahead but we seem to have this unspoken trust in one another that we will find the light if we just keep a little faith…

The Real Housewife (the unedited version…)

It’s no secret that I am a huge fan of the Real Housewives reality show.  I watch them all and although I know it’s not “real”, I am drawn to them like a moth to a flame.  Watching these once regular people allow cameras to come into their home to film their every move fascinates me.  Although much of it is scripted, it’s inevitable that aspects of their real life shine through and the “real housewives” are left vulnerable to judgment, gossip, and scrutiny. Reality TV has become a big part of our culture and we are clearly a voyeuristic population. We also seem to have a strong desire to be “seen” as evidenced by our use of Facebook.  Posting status updates about where we are, what we are doing, and who we are with at every waking moment and, of course, only posting the most perfect pictures of ourselves.

My husband once told me “people only see what you show them.”  At the time, I found it rather comforting as I was trying to cope with Sydney’s diagnosis and I was very protective of what was happening to us.  I did not want anyone to see the pain and suffering that we were going through and I certainly did not want to share Sydney’s disability with anyone.  I even suggested to my husband on more than one occasion that we should move where nobody knows us.  Thankfully, he didn’t listen to me.  The need to preserve our privacy and shield my family from the judgmental eye of others was understandable and undeniable. 

This past summer I noticed a change in my ability to maintain our privacy.  There is a part of Sydney that has matured.  She no longer accepts being left out of the loop.  She wants to be a part of whatever is going on around her. She yearns to be social and has become very curious about the world around her.  Unfortunately, there is another part of her that still remains infantile in her mannerisms and gestures.  Her speech, although has greatly improved, continues to be difficult to understand and her response to chaos results in toddler-like meltdowns.  It is this dichotomy that draws attention to us.  Attention that I find very uncomfortable.  Sydney’s need to be included has posed quite a challenge for me.  Plain and simple when we are out in a public space there is no place to hide and the disability is on full display for everyone to see.

Simply put, I hate it.  I cherish my privacy and have found comfort at being in control at showing people only what I want them to see.  Who I am, how I parent, what our family struggles with, and who my daughter REALLY is have become apparent to everyone we meet.   I find it interesting that while I work so hard to protect my reality, these “Real Housewives” are so quick to let the world see all of their dirty little secrets.  I think that’s what draws me to the show every week.  I sit there watching with a look of shock and awe thinking, “Why? Why would you purposely put yourself on display like that?”  Of course these women are not only getting paid for their full disclosure they are also edited.  Bravo does an excellent job at showing its viewers what they want you to see and it really does make for very entertaining TV:)

My “reality show” is not edited.  It is uncut, it is raw, and it is real.  A simple trip to our local pool and everyone knows I have a special needs child who hits herself in the head.  Food shopping at the supermarket invites viewers to see and hear how cognitively impaired Sydney is just by listening to her speak and the questions that she asks the cashiers (over and over again…).  An afternoon at the mall allows hundreds of people to see that her behaviors can be loud, disruptive, and downright horrifying and there is not much her mother can do about it.  My outings invite judgment, stares, ridicule, and pity.  As a result I feel exposed, sometimes violated, and ultimately “on display”.

Early on I cared what other people thought but not anymore.  I no longer edit my life and only show people the perfect moments.  Special needs do not work that way.   The needs are real, they are honest, and they cannot be filtered.  Sydney is determined to be a part of this world and it is not fair of me to try and stop her. 

I have learned and accepted that I need to embrace being “real” and comfortable enough with myself to allow people to see that part of me.  I used to think that I was trying to protect Sydney but the truth is I was really protecting myself.  Shielding myself from pity glances and stares was about me not her. Sydney couldn’t care less what people think of her.  She is proud of who she is and loves to share her kindness with everyone.  She is incapable of being anyone but herself and never feels that she is something that should be hidden.  She is oblivious to glances and stares and only sees the good in others.  She enjoys being “on display” and loves when everyone notices her, in fact she insists on it.

I am not quite ready for Bravo to air my “reality” show, but I am ready to step outside my comfort zone and allow Sydney to be whomever she is going to be…. uncut and unedited.

 

If we could only stay in kindergarten forever…

Sydney is 7 years old but has been in kindergarten for the past 2 years.  The decision was made to keep her back for many reasons, but the most significant was to help close the gap between her peers.  Although she can read and write and do simple math exercises, socially she is so far behind her classmates that a kindergarten setting seemed most appropriate. 

Being different, special, challenged, disabled, or whatever words you wish to use is never easy.  Getting people to accept you unconditionally can be tough.  To incorporate such a child into the fabric of a mainstream education is downright complicated.  However, the process is much easier when the individuals you are trying to integrate are kindergarteners.  There is something very unique, innocent, and quite frankly enlightening about this age group.  Simply put, they accept with out question, include without hesitation, and have not been tainted by what society deems “normal or typical”. 

Sydney, as I have written about many times, can display some socially outrageous behaviors ranging from self-injury to aggression towards others.  She has been known to take off her clothes when distressed throw the nearest objects across a room.  I would imagine such behavior would be deemed very disturbing and unsettling for another child to watch.  She demands quite a bit of attention and is constantly asking for others to watch her as she engages in even a simple activity. I would assume not always that much fun for the other child. I often wonder how she will have any friends or how her peers will get past these socially awkward behaviors.

In addition, her speech is not always easy to understand (my husband, who is known for his sense of humor and frequent movie references, will often turn to me after she has tried to tell him a story and ask… “Lassie, is jimmy in the well?”). Her recall of certain events is also not always accurate.  Therefore asking her questions about who her friends are and what she did with them can sometimes yield very few informative responses. 

Her teacher called me the other day to say that Sydney hit another peer. This was not the first time I received such a call and I am sure will not be the last.  This is one behavior I find particularly bothersome.  I would actually prefer she hit herself as opposed to harming another child, but unfortunately, it is very difficult to control.  The teacher went onto say that Sydney was having a rough afternoon and while being escorted to her quiet time area she hit a little girl on the way out the door.  The girl never saw see it coming and really did nothing to provoke Sydney.  The teacher, of course, had to call her mother and discuss the incident. The child had already told her mother about it.  As the teacher is telling me this I can feel myself turning red with embarrassment and cringing at the idea of my daughter laying a hand on someone else.  Then the teacher shared with me what the mother said.  The daughter said, “mom Sydney hit me today, but I think it was an accident.  I know she didn’t mean it; she was just walking out of the classroom.  Anyway that is just what Sydney does sometimes and we all know by now to duck when Sydney is in that kind of mood”. 

I am not condoning hitting anyone and we are actively working on teaching Sydney more appropriate ways to manage her frustration, but I wanted to go hug that little girl.  Her innocence and unconditional acceptance of less than typical behavior was so refreshing.  There was no judgment, hostility, or animosity.            

As we have been preparing for our transition to first grade in the fall I have been thinking a lot about these episodes.  Kindergarteners are a true role model for all of us.  They seem to have the basic understanding of how to be an authentically accepting human being.  They have not learned all the stereotypical negative verbiage yet and they appear to include everyone regardless of their “special needs”.  If only there was a way to preserve this genuine human kindness as they get older.  Unfortunately, with time, differences in people become undesirable and slowly lead to toxic behavior.  The strong need for their own acceptance leads them to do or say whatever it takes to maintain their foothold in a group.  In many ways it is a natural progression as we age and it is up to the adults in their lives to help preserve what was so pure and innocent in them to begin with.  Not an easy task when our society bombards us with inappropriate vernacular or labels to help categorize individuals.  The need to put everyone in a certain group slowly begins to highlight our differences and thus begins to erode that organic inclination to accept everyone for who they are.

My dream for Sydney is that she stays in an environment that would accept her for who she is – good and bad.  Of course, it is only a dream and I recognize that this is simply not the world we live in. 

If there were just some way to bottle the innocence and kindness of a kindergartener I think we would all find ourselves living in a much kinder and gentler world.

“You can’t always get what you want, but if you try sometimes you might find you get what you need” – The Rolling Stones

When I discovered I was pregnant with my third child everyone asked me if I was hoping for a girl.  My other two children are both boys (Irish twins).  Of course, I said no, I just wanted a healthy baby, but that was not entirely truthful. In my heart, I did want a girl.  When the time came to find out the gender, my husband and I agreed that this time we would wait and be surprised.  We never experienced that moment at birth because in the past we just had to know.  The reality is that we really don’t love surprises but this one we thought we could handle.

At the time of the 20-week ultrasound, the technician turned to us and asked if we wanted to know the sex and without even looking at each other we said yes.  The allure of the surprise quickly disappeared.  The instant I heard it was a girl I began to cry.  They were tears of joy and disbelief and within seconds I already formed an image of her in my mind.  I had her whole life mapped out.  It is amazing how quickly the mind works.  Although intellectually I knew that my fantasy of what she would be like was just that, fantasy, I still couldn’t help to think that she would be a smaller version of me (but better).

I remember vividly how we chose her name.  We wanted a name that was unique, not too girly, and represented in my mind someone who was strong, independent, and self-sufficient.  My husband and I at the time were big fans of the show Alias with Jennifer Garner.  Her character was named Sydney and she portrayed a strong female that simply “kicked butt”.  It was perfect for my daughter and was consistent with the fantasy life that I had already envisioned for her.  A girl who could keep up with her two older brothers.  A girl who would be tough, brilliant, witty, and determined.  A girl who had a strong sense-of-self and an unwavering self-confidence.  I looked forward to watching this person come to life.

For those of you who have read my previous blogs you know this is far from what actually occurred.  I gave birth to a beautiful baby girl but she turned out to be different than I expected.  As the months went on she suffered from neuro-cognitive delays and slowly I knew she would never be able to accomplish all that I had envisioned for her that day of the 20-week ultrasound.  I watched Sydney miss every single milestone, not speak till she was 4, suffer from uncontrollable tantrums, and slowly morph into a child with classic “syndromic” features.  My desire to teach and provide my daughter with all the skills and tools I thought she needed for a fulfilling life was lost.  I will admit that at times it is hard for me to be around other little girls her age and watch them do all the things I had dreamed of for my daughter. Her needs, her desires, her life skills were much more basic than I ever could have imagined.

There are moments in your life when you contemplate who you are and discover how much you have grown over the years.  Maybe it is a midlife phenomenon but lately, I have realized just how much I have changed as a person or individual.  I am simply not the same person I was at age 20 or at 30.  My priorities, values, and temperament are completely different.  I am more patient, more tolerant, more accepting, more forgiving, and most importantly more present in my life. At the same time I find myself more strong willed than ever, relentless in my pursuit of securing a safe and supportive environment for my children, and determined to conquer all the challenges that come my way.  In short I went from being a quiet, insecure, wallflower to a “butt-kicking”, strong, and fierce advocate.  All the qualities I wanted for my daughter, but more specifically all the things that I was not.  It is ironic that it was my special needs daughter who taught me how to be “Sydney”.

I think back to that 20-week ultrasound and to the baby girl to whom I thought I would be the role model.  Simply put, I did not get what I wanted.  I cried about it for a long time until I realized that sometimes you end up getting what you really need.  In the end my daughter turned out to be my role model and teacher and actually taught me how to be a self confident, independent, and determined woman.

And for that…I thank her.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It’s just a basketball game (or is it…)

Like many families, attending their child’s sporting event is a big part of any weekend.  Having two boys, I must say it keeps us very busy.  As I have mentioned in previous posts it is very difficult for Sydney to partake in such events.  Her short attention span, excitability, and loud/disruptive behavior makes it almost impossible to do it smoothly and without a scene.   She does not comprehend why she has to sit on the sidelines, why she can’t run over to her brothers who are on the field, or most importantly how to simply be a spectator. For the past few years we have either arranged for childcare or I would do something else with her while the boys were at the game with their father.

This past weekend we found ourselves in a bit of a bind and had fewer than usual options for childcare.  Of course, one option would have been to have another family take our son to his game but that was not really ideal.  I just wanted to do what typical families do and that was to take all the siblings with him (including Syd).  For most families, they would not even give it a second thought, but for us it required a few days of preparation.

First and foremost, I discussed it with my son.  My boys are well aware of Syd’s limitations and how disruptive she can be at times.  Her low, hoarse voice, her relentless calling out of their names, and her absolute inability to control her impulses could result in her running straight into the middle of the game.  The scene at these games can be very exciting for Sydney, almost too exciting, and we did not want a meltdown to embarrass or draw attention to our son.

My boys are very patient and sweet with their sister. They are very understanding of her lack of self-control, inability to reason with, and primitive coping mechanisms for stress.  They tolerate it surprising well in their own home, but taking that scenario on the road (so to speak) is a different story.  I must admit it is hard for me to argue with them as I find it equally difficult as well.  Plain and simple, when you are out in public with Sydney you feel like you are on display.  She has a way of getting all eyes on her/you and our family is much more comfortable blending in with the background than to have any attention drawn to us.  Sydney, of course, has changed that and as the years have gone by we are slowly becoming more and more comfortable with it.

After explaining to my son that she would join us and reassuring him that I would not allow her to run onto the court in the middle of the game or incessantly call his name, we agreed we would give it the old college try.  I explained to him as well as convinced myself that sometimes we have to force ourselves out of our comfort zone to see what we are truly capable of.

The next step was to prepare Sydney.  A few days before we started talking with her about watching sports.  She understands that her brothers play sports and are always going to them on the weekends.  I started by telling her about the type of sports they play and what they do when they play them.  I also told her that people like to watch them and step-by-step I explained to her what it means to be a spectator.

You should know that every morning I write a list for Sydney on what her day is going to look like (a painfully detailed list). Sydney has very poor executive functioning skills and sequencing the events of her day is a very challenging skill for her.  It causes a great deal of anxiety when she does not know what to expect next.  This list serves as a map of her day.  On this particular day, I included her brother’s game as part of our daily activity.  She was extremely excited about it.  On a separate piece of paper I wrote out how you watch a game.  I included in list form the rules of being a good spectator.  We read the list several times until I felt that she memorized it.  Once again, I assured my son that I had it all under control and that if things went awry we would simply wait for him in the car.  He seemed comfortable with the plan and, in fact, I think he was cautiously excited for her to watch him play.

Game day arrived and the three of us went in.  I was surprised at how emotional I was.  It was just a basketball game for goodness sake.  People go to them all the time, but the amount of effort I put into this being a success I guess was more draining than I had appreciated.  I wanted her to succeed more than I realized.

Sydney and I took a quiet seat in the corner away from the crowd and we settled in to watch the game.  I walked her through the whole thing.  Where her brother was, what he was doing and when she could cheer.  And cheer she did.  Her loudness served her well in this situation and she was truly an amazing little cheerleader.  It actually brought tears to my eyes.  I began to relax a bit and glanced over to my son and gave him a little reassuring smile.  I could tell he was excited and proud as well.

I looked around the gymnasium and could feel an array of mixed emotions.  Ecstatic and proud at what we managed to accomplish that morning, but tired and resentful at how much work went into simply going to a child’s basketball game.  I could not help but to envy the parents sitting around me who were relaxing and drinking their coffee and chatting with other parents while watching their child play.  At that moment a little self-pity (we refer to it as a pity party at home and my husband usually reminds me that the party is over and all the guests have left) crept in but, simultaneous to that, I also felt an amazing sense of pride not only for myself, but also for Sydney and my son.  The three of us took ourselves out of our comfort zone and we all grew a little bit that morning and it felt pretty good.

After the game Sydney ran up to her brother giving him a high five, patting him on the back and wished him congratulations.  Ironically, we probably should have been doing that to her for what she accomplished that morning.

There are so many typical life activities that are so difficult for Sydney to participate in but I think as a family we are ready to take on more and more of them.  No question I no longer take little events in life for granted. I recognize that it may be harder for us to participate but clearly the payoff is worth it.  We may not be successful every time and that is ok… (I think).

Our next big event to tackle is a family vacation.  Needless to say, the lists will be longer but the payoff hopefully greater.

What the books don’t tell you…

I can’t remember what I read yesterday, but I can remember the first thing I read about SMS, which was over 5 years ago.  The study I read was basically an overview of the syndrome and listed all the horrific components of the disorder.  It started off by stressing the rarity of the syndrome and how little was really known about it.  It continued with a litany of negative aspects of the syndrome, which included cognitive impairments, developmental delays, self injurious behaviors, ADHD, anxiety disorder, OCD, sensory issues, emotional regulation issues, sleep disorders, AND tantrums…severe ones, and that they require constant one on one attention.  It recommended all the basic interventions such as speech therapy, physical therapy, occupational therapy, behavioral therapy and special education but offered little else in terms of true treatment.  At the very end of the study, hidden in the conclusion section, it said that individuals with SMS had funny and endearing personalities.  That was the only positive remark throughout the entire article.  In fact, at one point in the article there was a sentence that read that this was considered one of the worst genetic syndromes (whatever that means).

I remembered feeling hopeless, terrified, and physically ill after reading this and it took me years to come to terms with it.  I recently looked back at that study and approached it from a different perspective.  Although it did say all those horrific things, it left out some very important information but before I get to that, I would like to share a few additional thoughts.  First, intellectually I know that study was meant to provide a factual perspective of the syndrome and was not meant to coddle the reader or address new parents.  It was meant to explain a very rare disorder and the severity of the affliction.  Therefore, looking back now I completely respect that the study was rather one-dimensional.  It left out the single most important thing about SMS or any syndrome for that matter, the individual itself.  I can see that now, all these years later, but back then I simply could not.  All I remember was that I was faced with the worst nightmare imaginable without a single clue on how to deal with it.

I now realize that there is a wealth of information that the books, articles, and studies don’t tell you.  It is critical material that only time can reveal.  Looking back I wish someone had written that I would find happiness again and that I would laugh again.  It would have been helpful to read that Sydney would be more than a genetic misfit and would actually be an individual with her own unique personality.  But the truth is even if someone wrote that it would have been hard to believe it.  You simply have to experience it for yourself. 

Regarding Sydney, this past year has been a series of accomplishments and disappointments but there has been tremendous growth in certain areas.  We have been experimenting with medications for Sydney to help with her anxiety and self-injurious behaviors and have seen real progress.  We have also noted development with her speech and language.  As a result, a new side of Sydney has emerged; a side not written in any scientific journal or book.  The decrease in anxiety and increase in her ability to communicate has brought a new individual that has introduced herself to me.   She has so much to say and her own unique way of saying it.  She loves to laugh and make others laugh. Of course, the global impairments are still there but they no longer feel so sterile and cold to me anymore.  Her warmth and genuine empathy can disarm anyone who is put off by her limitations.

Moreover, what the books didn’t tell me was that I was going to develop a new set of emotions that would help me live with and make sense of this complex syndrome.  Gone are the old familiar feelings of simply happy or sad and angry or accepting.  They have been replaced with new hybrid feelings. A feeling somewhere between happy and sad, which I describe now as immensely proud but painfully disappointed.  Angry or accepting, I now refer to as full of fury mixed with unwavering hope. 

I will be honest it has been hard to feel pure happiness living with special needs because inevitably the reality of the loss infects the joy.  On the other hand, it is hard to feel angry when on a daily basis I am faced with incredible challenges that have forced me to grow and become a more enlightened individual.  I am grateful for my new perspective on life.   I wish I acquired it without the pain of special needs but regardless, I am enriched for it.  Clearly it would be difficult to describe all that in a journal article and even tougher to convey to those who just received a life altering diagnosis that laughter will enter your lives again.  It’s not a carefree laughter but you do develop a new sense of humor.  You have an incredible ability to laugh at yourself, your circumstances, and find the humor in the quirkiness and uniqueness of your child’s personality.  No doubt you do feel alienated from your non-special needs friends but you begin to build an alliance with a new group of individuals, some who you may never even meet in person.  What is great about this group is although you may not have chosen them as your friends; you will find that what you have is an unspoken bond.  They know this new world of emotions you are experiencing and you never have to explain it.  So when these new friends hear laughter and tears in your voice or see profound disappointed coupled with unconditional love in your eyes, they don’t pity you, they understand you because they have been there too.

I now know that I was never going to find the guidance, answers, or the wisdom in books.  It was going to be from my own experiences and not from scientific studies or data collection because the truth is, no matter who you are or what you suffer from, at the end of the day we are all unique and that can never be adequately described in a book.

 

 

 

 

“Those who wander are never really lost” – J.R.R. Tolkien. (Life without a GPS…)

The sudden feeling of being lost is both uncomfortable and undesirable. You are struggling to get somewhere yet you find yourself in the middle of nowhere because you took the wrong turn or missed a stop.  I am sure many of you have experienced this while driving to a new or rarely frequented destination.  The verbal arguments that occur in the car between you and your spouse in hindsight can be rather comical (often long after it is over).  But in the moment, the fact that your husband will rarely ask someone for directions can be downright infuriating.  However, with the advent of the GPS, I would imagine these situations rarely occur anymore.  If and when they do, although some may not admit to it, you find yourself yelling at the computer voice of the GPS and blame it for your wrong turn.  The GPS has been a very valuable invention and has managed to alleviate much stress in our lives when attempting to travel someplace new.  It is a shame there is no GPS to guide your way through life, particularly life with a special needs child.

Being thrown into a life with special needs with no map or pre-printed directions is basically like being left without a GPS and it is a daily struggle to find your way.  No amount of standard education can prepare one for this life. I am simply learning as I go and I have very little or no directional control or special needs compass to guide my way.  I guess I feel more lost than I have ever cared to acknowledge or at least that is what I have recently discovered from two recurring dreams.

It is fascinating that dreams rarely, if ever, misrepresent how you truly feel about a situation.   In one of my dreams, I am simply unable to get where I want to be.  Something always seems to be standing in my way and manages to come between where I am and where I need to go.  The people, places, and time always change but the main idea remains the same.  The dream that stands out most in my mind is the one where my mode of transportation, which is usually a car or bus, has broken down and I can’t get home.  No one is willing to stop and help me find my way back and no matter which direction I walk I always end up further away.  Another dream is that I am back in College.  It is the week of finals and I have tests and term papers due and I look back at my notes to begin to study only to find that I never attended a single class and don’t have a single note available for review.  I find myself in a state of panic trying to find someone to give me all the notes from the entire semester.  It does not take Freud to realize that these are feelings of misdirection and anxiety that I experience during my unconscious hours.

This year has brought with it significant questions regarding Sydney’s education, her challenging behaviors, and the accommodations that our family is being forced to make.  Ironically, in these last two areas we have, in fact, experienced some growth yet it appears that no matter how far we get we never reach our destination (not quite sure where and what that is yet…).  I never quite feel a sense of forward progress because with each accomplishment comes new and different obstacles which turn us away from our projected path.

As Sydney began Kindergarten, a big transition for any child, I have been working hard to figure out the right classroom environment.  The big question remains, what exactly is the appropriate environment and where do I find it.  SMS is rare and her entire public school team is unfamiliar with it so the burden falls on me to determine whether what they offer is adequate or even progressive.  I have evaluated all the school options in my area and not a single one is familiar with the educational challenges and pitfalls of a child with SMS.  I ask myself how can I ever be sure we are doing the right thing for her?  There have been countless meetings with the school and numerous hours spent on the development of a schedule/curriculum that not only addresses her need for a small classroom environment but also fosters her academic growth.  I am left to trust in those around me to come up with the right direction to go, yet I yearn for a computerized voice to show me the way.

For any child with SMS managing emotional behavior is a lifelong process.  What makes SMS different from other syndromes are the complicated, primitive, and rather disturbing behaviors that are exhibited by these children.  Without going into too much detail and without compromising Sydney’s dignity, I can assure you these behaviors have stumped even the most accomplished and experienced behaviorists.  There is no quick fix and certainly no simple solution.  These behaviors force those that work with her to forget everything they knew to be true about behavior modification and accept a whole new approach to the process.  I can confidently and proudly say that we have come a long way in this area.  The right behaviorist (the closest thing yet to a GPS for SMS) has allowed us to make many accommodations to Sydney’s environment, accept her limitations, and educate those that work with her on a daily basis and we are now in a FAR better place than we were nearly a year ago.  That being said, no matter how far we get there is always a new turn or new direction needed because of a new behavior and we remain on our endless journey and often feel lost.

I have given my dreams a great deal of thought and have really listened to what they are trying to tell me.   I suddenly realized that I always awoke before I would find my way home or before I had to take the final exam.  My dreams never really got me lost and I never actually failed anything but what they did do is highlight a very complex journey and illustrated that there are many paths that may lead to the same destination. Although it may appear that I am not moving anywhere, in fact, I believe I am.

Instead of feeling that dreaded sense of being lost, I prefer to think of myself as a wanderer.  I will always be searching for a new direction for Sydney or a new approach to conquer her maladaptive behaviors but I ask you…if you are always searching can you ever really be lost?