Finally Freeing Family Letter

A letter about my family,

Do you remember the old verse, which described Monday’s child as “fair in face”, Tuesday’s child as “full of grace”, Wednesday’s child as “full of woe” and Thursday’s Child as having “far to go”? Years later, long past the time I last remember thinking of this classic old verse, life dealt me a hand which completely changed my perspective in many ways and most importantly would become a catalyst for positive change in my future as an actual grown-up.  

I’ve grown up and am now a Mom to my wonderful, funny, kind hearted son S who is incredibly, fourteen and a half years old now.  I’m also lucky enough to have been given a second chance at love and have an amazing spouse named James.  He is one of a kind in many ways, but most of all because he came into my and my son’s life when S was just two and a half years old.  Since that time, James has fully stepped into a new parenting role and now he is truly the only father my son S will ever know.  

James gets up at 3:00am or 4:00 am most mornings to go to work at a stressful job so that he and I can maintain our home as a safe and loving environment for us and especially for S.  

Even though S is now 14 years old, he faces some pretty significant challenges which affect the executive functioning portion of his brain which equates to many things including affecting his impulses, ability to self regulate and affecting his emotional maturity. He also has several mental health and behavioural conditions which greatly affect all aspects of his (and our) lives.  The treatments for these conditions require expensive daily medications and expensive behaviour therapy sessions.

  I (Kerri) have had to postpone (give up ?) working outside our home since S was very young due to expectations of availability for me to pick up my son at any point during the school day should ever the need “arise”.  We are supporting our household on primarily one income for these reasons.  S’s, daily medications cost hundreds of dollars every month and his weekly behaviour therapy sessions are also very expensive but are a very important part of his treatment plan.  

There are some improvements we would like to make to our home and James would love to finally be able to get a new vehicle after driving the same one since 2007, but these are sacrifices we must make to help S keep working toward achieving his best possible quality of life as he reaches adulthood.

S is an amazing teen who struggles each day but who also shares my kind heart and passion for always leading  with kindness, for helping others as much as possible. 

James is one a kind, he’s truly the type of person who has strong family values, treats his lovely Mom like the Queen she absolutely is, works very hard, loves S and I, and who really deserves for something incredible to happen to him.  

S has been through many dark days in his life.  I know more may present themselves in our future, but I also know as his Mom how incredibly resilient he is.  S also deserves something really incredible to him.  

I decided to structure my support group around challenging the idea that kids like my (our) son have “far to go “, like the “Thursday’s child has far to go” line tells us in that old classic verse.  

Instead, by presuming competence and never placing limitations on the possibility of him always reaching new goals, we can turn around the idea of children with these types of challenges should continue to be referred to as not “normal”, or keep being unfairly referred to as ”damaged/defective “ somehow, so that’s why they are struggling in life .  

Actually, that’s truly why they still have “far to go” and why they are far too often misjudged as being lesser in worth than a “typical” peer and regularly unfairly characterized as being “not normal”.

I’m very proud of my son and welcome anyone who wants to refer to him as an example of a new, more positive upgrade to the traditional list of required character traits of a Thursday’s Child doing so .

 S is determined, loyal, kind, smart and tries to help others whenever he can in spite of the extra challenges he copes with daily.  

Thanks very much for allowing me the opportunity to tell you more about my family.  We are Kerri, James and S. 

It’s very nice to meet you.

Jesus take the Wheel

Hello readers , It’s been way too long since I’ve written but the time has finally arrived.  To say the year 2019 has tested me in ways I never anticipated is absolutely an understatement. Looking back at the last time I wrote a post was bittersweet. Fortunately nothing like that has happened again and likely never will which is a relief but still a sting even over two years later.

Today my funny, fantastic and feisty little guy is growing up in more ways that I can measure .  I can’t really call him little anymore since he is only slightly shorter than me and is about to finish his Grade 6 school year!  Looking to the future is finally met with promise and hope rather than only wrought with palpable anxiety.  My worries still remain, but there is a strong sense of hope building daily which helps quell those dark fears.

Raising a child with complex mental health challenges is a complexity of its own : gruelling, frustrating, it’s often like trying to keep a rowboat afloat during a typhoon!  I’ve realized there are times when it’s necessary to accept things are going to happen that are out of our control and it’s okay to turn over control to a power greater than oneself. Having a sense of faith, a belief in a higher power, or even just a sense things happen for reasons we don’t always understand has been a life long challenge  for me.   Once I tried turning overwhelming situations over to that greater being, openly realizing I am not in control of all things at all times, I was surprised at the sense of relief it brought.  Surrendering my struggles over to something greater than myself has become a very positive force in my life.

During these challenging moments I’ve taken to repeating a new mantra of sorts in my mind and also out loud.  “Jesus take the wheel” has become a coping mechanism and was actually adapted from a country song!  My relationship with any sort of religion has been complicated at best, but I can say the idea of surrendering the most overwhelming challenges and admitting you need help, you can’t control everything, is actually very liberating.

This year began with a strange mystery. I woke up one morning at the very beginning of a new year and quickly recognized I couldn’t put any weight on my left foot without experiencing a searing pain.  After what I can only describe as a long series of medical mishaps, an actual comedy of errors brought to life, including a misdiagnosis, we discovered my foot is broken.  After over five months of hobbling around in an air cast it remains broken to date and isn’t healing.

The challenge of trying to meet my son’s needs while in this condition for such an extended time period has been monumental. I’ve had to use my new mantra many times over the last several months.  The Eurithmics classic tune ” Walking on Broken Glass” has been constantly on my mind, since it’s the only way I can give a literal description to how it feels walking on a broken foot.

After months of trying I’m finally going to see a surgeon very soon. My son and loving partner have been able to show me its okay to ask for help and have had to adjust their expectations of me to fit my current situation.  I’ve heard after every storm there’s always a rainbow. After a very challenging several months we are definitely ready to move forward with a new treatment plan and bask in the brilliance of that light!

96 Hours

Recently the most unjust, unimaginable and horrific thing happened over what was supposed to be a joyous holiday weekend.  It’s still so raw, fresh and my pain is definitely stil palpable. I made a promise to try and turn pain into purpose so here goes…

Blindsided. Targeted. Judged. Shattered. Separated.  Have you ever had to endure an experience so shocking it actually took the breath right out of your chest and shook you to the core of your being? I and my sweet, gentle, loving soulmate have just had to endure such an awful experience. I’m hoping by sharing our pain we might be able to help prevent others from having to endure such unnecessary grief.

Advocating for a child with complex mental health conditions is extreme, intense and exhausting ..even when things are going reasonably well. Many people just don’t understand the emotional and physical toll it can have on parents who must sacrifice so much of themselves, just to maintain the pace required to meet their child/children’s needs.

To those who have actually managed to gain access to the ever magical concept of respite and have turned it into a reality I offer my sincerest congratulations. As for the rest of us who are floundering to keep our family vessel from sinking into the stormy waters of mental health crises ..we need help! We are in the fight of our lives..battling against an invisible, relentless, ever present foe.

I’ve also made another critical promise ..to dedicate my life to advocating for my son’s needs and for other families whose children cope daily with mental health challenges. There is always much to learn and I wouldn’t ever consider myself to be an expert, although I was very proud of my accomplishments to date.

Then the phone rang.  In a few short moments our lives were completely turned upside down.   A stranger to me in a “professional” role was telling me I would have to be separated from my son for 96 hours until they could determine it was “safe” for him to be in our home.  My questions were not answered. My efforts to explain his challenges and the connection to making false, concerning statements fell on deaf ears. My plea to have a look at relevant medical and past information was ignored.

I have never felt so powerless , betrayed or disgusted in the entire nine years of my role as a parent. Years of hard work and advocacy to develop an effective support team for my lovely boy seemed to be completely disregarded. Such a devastating realization..it just didn’t count!

I think the tide is turning in our favour and in time we will heal from such a horrible ordeal. My little fellow is back in our arms where he rightfully belongs.  There are so many unanswered questions and layers of pain to sift through.  My power lies in being brave enough to write about such a horrific, unjust , unnecessary ordeal in hopes other parents will not have to share this experience.  Systems need to adjust their responses when mental health challenges are involved. This is sadly one example of  how families and parents can be unjustly crucified even when they have done everything right,  Parents have rights and should be treated with more respect. Period.

The irony is not lost on me that we faced one of our greatest challenges during the Easter weekend…parallels to the biblical crucifixion aren’t lost on me. I’m not sure of the significance if any but the timing speaks volumes.  I won’t stop until my questions have been answered and until I have some reassurance this won’t happen again.  Hold tight to those you love and those you can trust.

96 hours… Without his shining blue eyes, hilarious jokes or his little body snuggled up to mine, seeking the comfort only a mothers touch and singing voice can provide. Who knows how long it will take us to heal..but I assure you we will get there.

 

 

 

 

 

 

 

 

 

Warrior

Standing in my own truth. These five words have become a mantra of sorts, a mission I’ve finally had the courage to embark on. Motherhood is the greatest teacher, the most noble of pursuits and arguably exceedingly unpredictable. It has limitless responsibility, and can expose a person’s deepest thoughts, anxieties, complexities, strengths, weaknesses, truths and lies.

The story I’ve never told is the multifaceted enigma of parenting a beautiful, intelligent complex young son who copes with mental health challenges. My loving, compassionate, hilarious, inquisitive little fellow fights a battle each day against a faceless enemy. He is a warrior and I have quickly learned how to become one right alongside him.

Nine months. It seems incredible an entire human being can be created at all, let alone during such a short amount of time. Whether a person believes in any deity, it would be difficult to argue the creation of life is anything other than miraculous. So many hopes, dreams, visions come to life during this magical time of expectation…the framework of life is built cell by cell, brick by brick…nature constructs the house we will reside in for hopefully many years. Sometimes there are cracks in the foundation, flaws one could never have anticipated.

The journey of special needs parenting is intense beyond measure and often bittersweet. The truth is, it pushes parents to their extremes and beyond..especially if the challenges are “invisible”. This term honestly puzzles me as, the challenges we face each day are clearly visible to us. I suppose it is an effort to describe how mental health challenges present themselves. My son’s truth, (and mine)? Every aspect of his life is impacted by attention deficit hyperactivity disorder, anxiety, sensory processing disorder, vocal tics, night terrors…etc., etc., etc. This list of conditions may attempt to describe daily symptoms but will never define who he is now or who he is destined to become.

Imagine if your mind was an engine..always running, spinning, revving up, never idling. That’s how my son’s brain is wired. His mind and body are in nearly constant motion. This often makes each routine daily task quite complicated. I realized in order to truly help him I had to face one of my biggest fears: asking for help. Admitting I was in way over my head, I was nearly drowning in a sea of intense emotional dysregulation, and had been lying to myself thinking I could keep everyone afloat.

Asking for help didn’t mean I had “failed”. This admission/request became the path to our salvation..the lighthouse in the midst of a stormy sea. It’s incredible how empowering it can be to admit out loud you are the parent of a child who has been diagnosed with mental health conditions and it is not any parents’ fault. There is still so much misinformation, stigma and unfortunately judgement attached to mental health diagnoses.

Sharing my and my son’s truth is the first step of a journey. For now, I’m choosing to focus on gratitude for the amazing team of professionals who are currently in our lifeboat. We are celebrating many successes and have found a combination of therapy/medication to help calm those waters. In spite of every storm we’ve weathered and even though it’s been a very intense eight years..different than I could ever have envisioned during those magical nine months, I honestly wouldn’t change the experience. I hope others may be inspired to ask questions, live authentically, compassionately and try to be more accepting of others. You never know when you may need someone to throw a life preserver.

Shine The Light

Hello readers, it’s been too long since I have written a post.  Here’s hoping you are navigating the choppy waters of this complex ocean, you’ve sailed through summer, floated through school start-up and are embracing the season of gratitude and thankfulness in spite of the challenges.

Recently, I had the good fortune to cross off an item from my bucket list.  I was given the honour of speaking on camera about my journey as a parent of a beautiful young fellow who teaches me more about what is truly important in life with each passing day.  My lovely little bunny boy, it was finally time to speak out and share with the world, our complex journey navigating the waters of mental health challenges.  After years of feeling so isolated, alone in the vast, unforgiving , stormy waters, a life preserver was finally thrown out to us.  I have struggled, cried, and wailed with grief too painful to articulate in any other way. I have faced days so intense words can’t even fully describe them.  I have worried about losing my beautiful boy, watching helplessly as he fought battles I couldn’t ever fully comprehend.  I have also struggled with my own foolish fears of others’ perceptions for far too long.  Throughout those darkest days, I clung to the belief that love would help me succeed in fighting for his life…love in its purest form would give me the strength to fight and win this battle.  After such a long fight, it was time.   At long last, it was time to celebrate hard won victories.   It was finally time to, as my mentor says “stand in your own truth” and to not waste any more time worrying about what others may think.

We represent the 1 in 4 families in our country who have a loved one bravely coping each day with mental health challenges.  This is my truth, our truth, and it has taken me years to freely shout it to the world without fear of judgement.  I finally recognized an opportunity to turn pain into purpose…to educate others in hopes of creating a more compassionate awareness in my community and also throughout an even larger audience.

After years of struggling, actually so often feeling like I was barely keeping my head above water while putting on a ‘brave face’  each day, it was time to stop trying so hard to be strong.  Having the courage to admit I needed help from specialists was absolutely the key to saving not only my child’s life, but most likely my own as well.  Being able to ask for and finally get clarity on the complex nature of his  diagnoses, and to finally be given more effective treatment options was like the lighthouse illuminating a stormy sea.

Being able to thank those who have been an integral part in allowing my lovely little boy a real chance at a happier, less complex, more carefree life is an unexpected, but much appreciated opportunity.  Back to the crossing  something really big off the bucket list.  Being chosen to speak in a public way, to finally turn the pain of those dark days into something so positive has been quite a transformative experience.   Since I am absolutely  a life-long Elton John fan, I have to borrow one of his lyrics.   “Shine the light, shine the light, why don’t you shine the light”..  Well with the help of an extremely compassionate, kind team of storytellers..I quite literally did just that.  I can only hope my story will also shine a light of hope for other parents who might be in need of hope just as I was.

With deepest thanks to the kind crew who believed my family’s story needed to be told.

Tooth Fairy Triumph

For Week Five of the #Blog4MH blogging challenge:

Remember how I said life can be funny sometimes within my last post?  Well this is a great example of that very true statement.  It also reinforces  the importance of cherishing the fun, lighter, happy moments that come with parenting and are sadly often masked by the complexities of parenting children with mental health challenges.  This little story is a great reminder for me and also other parents whose children cope with very tricky conditions to always remember those conditions don’t define them and should never take away from the bliss of reaching what one may consider to be an ‘ordinary’ milestone.

Recently, my lovely little boy began doing something he hadn’t done for quite some time and although I tried not to worry, deep down I was thinking it may be a hidden signal for future danger.  Even the slightest changes in behavior for kids with complex challenges can possibly  signal ‘troubled waters ahead’, so at first, my gut reaction of worry was actually justified.  I was thinking about what a new (or return of an old) behavior could really mean…will we eventually have to deal with another condition to add to the ‘list’…is this a new signal that his medication isn’t as effective as  it should be or possibly a repetitive ‘tic’ like behavior which can actually be an unwanted side effect of some medications…  Trust me, once my “Mommy Worry Train’ left the station really was ‘full steam ahead to Ulcer-Ville”.

So by know you’re likely wondering what he was doing that was causing me such internal distress.  It seems ‘harmless’ to write it, but here goes… he was putting things into his mouth again…toys, even his own fingers and kind of making motions like he was ‘gumming’ or even softly ‘biting’ his own fingers.   After observing this for quite a while and trying to think rationally about it instead of letting that train become a ‘runaway’  the light bulb finally went off for me.  I started thinking back to when he was quite small and going through the teething process, since I realized he was doing the same thing then!  A HA….  could it really be something simple, not scary or a signal of other troubles, but in fact a possible signal of reaching a happy milestone?

So earlier this evening after my wonderful fellow was ready for bed and just before the usual teeth brushing was going to start, I casually asked him if one of his teeth might be bothering him and if that was why he had been ‘gumming’ everything in sight over the past little while (even his own fingers).  It was so cute… he looked right at me as if it was totally obvious and said “Yes Mom,  my tooth is bothering me.”  Bingo!  It dawned on me right then so I also asked him if it was wiggly (loose).  He thought deeply about that for a second or two, tested out the theory then gave me a big smile (which is always so sweet to see).   “It’s wiggly…I have a loose tooth!”.  I wish I could find a way to describe the look of pride on his face using only words…the only thing I can say is  I will treasure that image in my mind and heart forever.  Watching him have to cope with so much each day and often miss out on those simple, innocent moments every child should experience is definitely at times very heartbreaking for me.   Fortunately, this moment was so simple, but full of pure joy…I felt all that silly worry evaporate from my stomach/mind/heart and could just simply share in that happy moment with him.  Bliss personified 🙂   We were also able to let Nana and Papa share in the happy moment, as even though he had already phoned to say goodnight a little while earlier I asked if he wanted to call again to  tell them the great news  (I had explained to him about the Tooth Fairy paying a visit soon when his tooth does fall out) and he was all over it 🙂

I think this is a great lesson for me to not miss those happy moments…to allow myself to not always ‘expect the worst’ if I notice little changes in his behaviors in the future.  Sometimes even a slight change may be a signal of ‘trouble ahead’, but not always.  There’s a saying in the medical profession, and forgive me, I’m totally paraphrasing…something about not always looking for zebras.  Meaning, doctors who are used to dealing with medical mysteries/complexities may unintentionally look at a set of symptoms and think they add up to a highly complex condition when in fact the simpler malady might be the true explanation after all.   I totally turned a simple childhood milestone into a ‘zebra’ and almost missed it entirely.  It’s a great  lesson for me, and it could be for other parents as well….just a neat little reminder that we can and will build those simple happy memories with our children…everything won’t always be stressful, strained, or full of struggle.   Hope remains 🙂

So I’m calling this my Tooth Fairy Triumph.  Yes I know it’s supposed to be about my son, but I think this is actually meant to be a lesson for me.  Life really is funny sometimes and once in a while, a wiggly tooth really is simply a wiggly tooth.

Sweet Success

For Week 3 of the Blogging Mental Health Challenge #Blog4MH

Life can be funny sometimes, even through the darkest days, laughter always permeates as long as you leave a little piece of yourself open to receive it.  I think one of the trickiest things about helping a child cope with mental health conditions is not losing that lightness, the sense of humor, the joy of life which is always there even if at times it is surely less visible.

For many years I’ve tried, with varying levels of success, or not so much, let’s be honest, to find ways to do those ‘fun’ things with my son.  It has been a bumpy ride, and certainly not something I anticipated having to struggle with since the picture I had in my head of parenthood was so clear to me before it began:

I was certain my new baby was going to be a little girl…holding onto the ‘proof’ of an interestingly deceptive 20 week ultrasound result…it was important to me to NOT be told whether a little girl or little boy would soon enter my life…I just took the word of the ultrasound tech who hinted she didn’t see any ‘extra legs’ if you catch my drift.  From that moment on, my intuition was solidified, or so I thought.

In my vision of impeding parenthood I saw myself having so much fun with my beautiful little girl…playing dress-up, and of course baking cakes with her Easy Bake Oven.  This was a lovely little dream and holy moly, life did throw me an 8 pound curve ball one lovely December morning.  For you see, my beautiful baby was in fact a boy, not a girl after all.

Many mothers have shared their heartfelt first words right after a baby’s birth.  I wish I could now include something equally heartfelt, memorable and illustrative of the love any Mom feels for such an amazing gift.  Well, honestly, since I was so surprised a little boy had just entered my life, when the doctor said “It’s a boy!”  I actually said “REALLY?”   Yes, that was my first word, the response forever entered my life’s history script, during the most important moment of my entire life, that’s the best I could do… really 🙂   Now I could claim it was due to some pretty powerful medications since my lovely boy was born via C section,  but does it matter after all?  No, since time stopped and my life actually began when I SAW him.  In one instant I finally understood what matters and felt a love stemming from every fiber of heart, mind and entire body.   Motherhood…the journey began.

Even though there have been many struggles I truly believe the strength of our bond, love in it’s truest form,  has and will continue to carry us through any storms that come our way. I realized by trying to ‘fit’  him into this vision I had before he was even born I was actually making things more difficult..it was becoming ‘work’ to try and have those ‘fun’ moments…I was floundering while trying to find a way to connect with him.  I also had to learn more about anxiety, and how to try and remove potential ‘triggers’  (any stimulus that could cause an increase in anxiety) before even attempting anything ‘fun’.  In a way it can still be ‘work’, but it has a purpose now and when things are structured to suit him the rewards are most definitely sweet.

Over time I’ve learned everything and probably even more than I ever wanted to know about Thomas and Friends (and trains in general) since that continues to be one of his primary interests.  We have had some nice play times,..those much desired and often fleeting moments of connection have and do continue to happen.  Honestly though, I’m what one would likely call a ‘girly girl’…surely not a tomboy by any means and a little part of me was still longing to find a way to make even a tiny part of my old vision come to life.

When a stove breaks this is usually a stressful, even awful thing.  As it turns out..an old stove finally conking out turned out to be one of the best things that could have happened in a long time.  That probably sounds unbelievable, but I assure you it’s true.  Once old ‘Smokey’ finally bit the biscuit we splurged on an actual set…a brand new fridge and stove that match and are not anyone else’s hand-me-downs.   I’ve always liked baking but didn’t really have the right set-up to do it justice.   With the shiny new stove also came and unexpected but much treasured bonus gift.  Now after many other not so great attempts. I’ve discovered my son also likes to bake!  He is finally able to concentrate on the steps needed to complete this fun task and I’m thoroughly enjoying baking cakes (and even cupcakes) with him.  After seven long years of waiting, we finally have found our ‘fun’…we have made something together….it’s so much more than mixing up eggs, batter, water and vegetable oil….we have created our own ‘connection recipie’… one I’m going to call  “Sweet Success”.

This is so much more than just baking a cake…it’s a testament to the power of perseverance, of one Mom’s love for her child, and ultimately of not letting any ‘conditions’  take away our fun.   I’ll never forget the first time we did this when it was time for him to pour the batter into the pan and he exclaimed “Whoa Baby”.  Priceless.   We have found a way to make this ‘fit’  and I sincerely hope other parents reading this who may have had similar struggles in the past will find the strength to keep going….find  ways to connect to their kids and continue to foster their own sense of humour/joy.   I don’t need an excuse to love cake, cupcakes, or for that matter anything sweet, but I can honestly tell you I haven’t tasted a better cake than the one(s) my son and I have made together. 🙂

My Bunny Boy

For Week Two of the Mental Health Blogging challenge  #Blog4MH

A question came across my email the other day regarding who I considered to be a champion in my life. Many people flashed into my stream of consciousness quickly, briefly, but the thoughts soon faded.  Wanting to choose wisely, especially since this post is part of a challenge with a wider audience, I quickly realized I was thinking too hard.  The answer was right in front of me, all I had to do was stop and let it materialize.

When my son was a young baby, before the onset of his challenges, some of which sadly do haunt his dreams, I marveled at how peacefully he slept.  He wasn’t one of those babies who struggle falling/staying asleep and honestly, even when he was very young I actually had to wake him for nightly feedings.  For that peaceful time in his life I will be forever grateful.  From a very young age I began to notice he had a unique way of placing his hands while he slept.  He would actually hold his hands up slightly as if they were bunny paws, all while fast asleep!  From then on, I began to call him my ‘bunny boy’.

As I think back now on those happy nights I spent watching him sleep with his hands raised, so content, utterly at peace, perfect from head to toe, it’s a bittersweet memory now.  So many nights since have not been peaceful, as coping with A.D.H.D. can also often include nightmares and even night terrors.  These are not easy to endure…it’s heart-wrenching to have spent so many nights hearing him upset, at times even terrified during the night and often feeling so helpless– needing to take the dreams away but not succeeding.

Thankfully, my beautiful bunny boy seems to be having more peaceful nights again.  For this I am filled with gratitude.  I can start thinking back fondly on those wonderful nights marveling over every inch of him, so tiny, perfect and full of infinite promise.   Oh my sweet, intelligent, hilarious, complicated little bunny boy, if only I could have known in advance how bumpy your path would be..to have somehow shielded you from battles even I don’t always fully comprehend.  That old saying ‘hindsight is 20/20’ is hollow, useless in a way since knowing ahead of time wouldn’t have changed the intensity of his path.

I realized, once the answer materialized, my son, my beautiful bunny boy is and always will be the ultimate champion in my life, and I hope I’m the same for him each day.  He copes with so much more than a little boy should every day and has not lost himself…his love of life, inquisitiveness, and ability to give/receive affection have not been dampened even in the face of his challenges.  As his Mom and champion, I have learned new terms like ‘self-regulation’, ‘impulse control’, and my absolute non favorite ‘invisible disability’.   That last one is a post all to itself (clearly horribly named and not at all an adequate description of everything he faces daily).  Fortunately other terms like ‘IEP’, ‘transition difficulties’, ‘school behavioral team’,  ‘functional behavioral assessment’ and ‘learning outcomes’ were not previously foreign to me prior to parenthood, although it has been educational to me to realize having prior knowledge/training  is not the asset I had hoped it would be since the ‘parent’seems to be permanently trapped on the bottom rung of the school’s power ladder.  My son has that critical love of learning…he pushes up against ridiculous levels of isolation at times bordering on discrimination, and still retains his sense of self…he is still perfect from head to toe and full of promise.  I will fight those battles he is too young to take on for himself…education is a right and should not be limited if a child has mental health challenges. Period.

Mental health challenges are complex in so many ways…neuro-biologically, medically, socially, emotionally, and unfortunately can create intense levels of stress not actually associated with daily symptoms.  Advocating on my son’s behalf at school, medically and especially constantly navigating through complex/highly inaccessible mental health ‘systems’ has become a full time job.  Wow, I just realized I must be due for one GIGANTIC paycheck soon…hmm,, it must be lost in the mail. The reason I wanted to be part of this mental health blogging challenge was to increase awareness, provide accurate information and promote acceptance of children like my son.  He truly is my ultimate champion.  He will accomplish great things in this world and is a shining example of resilience.  There are dark, incredibly intense, almost endless days…no question, but after getting through so many of them I can finally see the sunlight peeking through the clouds and am honored to be his Mom.

 

 

According to my calculations…

A new phrase is prevalent in our world of late and it’s bringing to mind a series of complex questions.  Very recently while attending a lengthy information session, the concept of advocacy was discussed.  In fact, the way it was addressed prompted me to question the very definition of the word and ponder how it has somehow become a parent’s duty to take on this role within a multitude of complex systems ironically at least on paper created to do that very thing on behalf of children with A.D.H.D and many other complex conditions.  The irony is not lost on me, I assure you.  I’m just not willing to accept it is solely my ‘job’ to advocate for my child.  Where is the accountability when professionals who are paid to do so and simply DON’T??

Let’s break it down into literal components… I actually looked up an official definition of the word advocate.  It is defined in part as a verb meaning “To speak, write, or stand up for something or someone” “An example of an advocate is a parent fighting for special education services for her child” ..  Source  “www.yourdictionary.com”

No really, I’m not making up the example…it is there.  Way to close to my own experiences.  I’m actually the definition of an advocate.  Wow.  OK, so here’s the question…why am I still struggling to get my son the education and mental health services he so rightly deserves?  I’ve done my research, stayed calm during countless meetings, exhausted local options for support and even taken my lovely boy to another community for specialized medical help. So why isn’t it working?? What do you do when the advocate needs an advocate??

I’ve come to the conclusion that at least in my ‘neck of the woods’  several key ‘systems’ are completely fragmented, convoluted, complex, overly political and even in some cases discriminatory toward children with ‘invisible’ challenges.  (Clearly, not actually meeting the needs of children who need help the most). Overly exhausted parents are already advocating for their children within multiple systems..it’s incredible how much red tape exists in order to even attempt to access help within the education and mental health arenas…high effort, little results…thus far.

Let’s be real, to have already spent countless hours attending numerous meetings with little tangible progress is akin to being a hamster stuck on his wheel, spinning repeatedly without actually getting anywhere.  It’s also incredibly ironic that within so many differing systems exist criteria meant, in theory, to help children who need it, but in fact at times actually further isolate, compartmentalize, complicate and even prevent that crucial help from materializing.

How is it possible that parents like me are feeling they are in some way expected to magically mend broken education and mental health systems for their children?  Why are persons in positions of power often quick to shift these responsibilities back to parents? Where is the accountability when persons are not meeting the needs of children who  need help the most?

These are among many questions robbing me of sleep each night.  It’s become clear a shift in focus is needed..my energy is better spent fighting for accountability and positive changes within these complex systems rather than unconsciously taking ownership of problems clearly in existence many years before my child was even born.

I don’t need anyone to tell me to be an advocate for my child.  It’s a no-brainer, and has become my identity long ago.  What I need is to connect with those who will stand beside me and will advocate with me to fight for necessary changes within outdated, overly political systems.  My lovely little fellow has had a funny phrase stuck in his head lately… remember in my first post how I wrote about him repeating phrases?  Lately many sentences begin with “According to my calculations…”  Well tonight I’m borrowing it and saying once and for all according to my calculations, people need to stop shifting focus back to parents who would appreciate genuine help the most, stop hiding behind made up criteria/politics and accept that key systems are in need of a serious overhaul.

To me, advocacy is not only a parent’s job.  When it works as it should, it also involves a team of other people from multiple professions united by a common goal: standing up for the rights of all children.   To those of you who have this team, my hat’s off to you…as for the rest of us, we are still fighting. I hope one day soon we won’t have to.

Hummingbird

Recently I read a fantastic article written by a Mom whose child has A.D.H.D. who compared the experience of hugging her child to hugging a butterfly.  Sound strange?  To me it made perfect sense.  For many years I have likened my beautiful, intelligent, strong, but also incredibly delicate child to a hummingbird.  It is a pet name of sorts, a term of endearment, a descriptor which captures him perfectly.  It all began when he was about 3 years old and my extremely patient, wonderful partner pointed out to me my son never actually sits down to eat a meal.  Strangely enough, I didn’t seem to notice it until EXACTLY the moment he pointed it out to me.  In retrospect I consciously had already observed it, just hadn’t actually processed it until that exact second.  We were enjoying a summer dinner outside and watching a little boy eat in a unique way.  He was in constant motion but stopped only for a few seconds at a time to take quick mouthfuls of food before completing running another circle around the yard.

At that moment, and every day since, I began thinking of my lovely little boy as a hummingbird.  He embodies such an interesting combination of strength and fragility – nearly always in motion.   As time has progressed, rather than worrying about why this constant stream of movement is part of each day for him, I’ve learned to embrace and admire another facet of his being.  It is an incredibly cathartic process to accept my fantastic child, piece by piece instead of expending precious amounts of my limited energy worrying whether he ‘should’ or ‘shouldn’t’ be doing certain things each day.

Recognizing and celebrating his uniqueness is certainly a complex process, a journey, an unexpected road, one which I can honestly say I am grateful for being chosen to navigate.  I often look upon him with a combination of wonder, amazement, fascination and pride.  It’s clear that his brain is also constantly in motion, constantly, quickly, processing much more than I can even imagine at any given moment.  His ability to hyper-focus, also once a source of worry, has now clearly become an asset, once which I hope he will be able to utilize as he grows and one day chooses his career.

Yes, I said something crucial for the first time since I learned he has multiple challenges including A.D.H.D.   I can honestly say I do believe he will be able to ‘harness’ his extra energy, slow down the pace of his thinking, learn to make his ‘wings’ flutter a little slower and successfully apply his magnificent brain in the career of his choice when he grows up.

It is possible to hug a hummingbird..trust me, I’ve actually done it many times.  When those rare, precious opportunities present themselves, when my little bird flutters my way, looks right into my eyes, holds out his arms and snuggles his head up to my chest while saying “Mommy, hug me” time actually STOPS.   Everything STOPS…he isn’t in constant motion! For a few precious seconds I can freeze the fluttering of his wings, hear the cadence of his heart song, feel the breath in his lungs, cherish the gift of his arms wrapped around me….bliss personified.  Every moment of struggle, pain, anger, defiance, aggression, anxiety, completely dissipates.  Divine.

Yes, I have hugged a hummingbird.  For all those other Moms (and Dads) out there who have done the same please don’t lose hope.   There are dark days, unquestionably.  You will likely face judgement from others at the worst times, often from those closest to ‘you.  I’ve learned to seek out support in creative ways, even to generate opportunities for other parents that previously may not have existed.  Pro-active, not re-active…it can become a mantra of sorts if you repeat it often enough.  Admiring the complex intricacies of my hummingbird has made it much easier to embrace him and I’m grateful the requests for hugs are increasing more each day.