Fighting Stigma

Stigma: Noun

Simple Definition: a set of negative and often unfair beliefs that a society or group of people have about something

b) A mark of shame or discredit

c) An identifying mark of characteristic; specifically: a diagnostic sign of a disease

Stigma is a monster with many tentacles.  It is shaming at its worst.  It affects more people than you or I could ever know.   I find it peculiar that with all of the awareness today that it is still so prevalent.  Take something as simple as our lexicon of speech.  One day I read a tweet that commented that the weather was bipolar; recently I watched a movie where a young child was labeled as bipolar for something as “normal” as being friends one day but not the next.  I would hope the writers were ignorant of perpetuating stigma as opposed to showing a callous disregard for those affected by mental health issues.

Those of us who have neurological conditions or any condition that falls into the realm of mental health find we are systematically trivialized, mocked and dehumanized. 

The trend of using a medical diagnosis as an insult is incredibly belittling to those that actually suffer from said diagnosis.  I don’t understand why people think its ok to call someone OCD because they like things a certain way or bipolar because they change their mind or schitzo because you don’t like their behaviour.   How offensive would it be if we used cancer or diabetes the same way?

Many of the people who live on the margins of society have mental health issues; they are vulnerable to exploitation, violence, addiction.  They are treated as pariahs inducing society to view them with disgust and fear.  This fosters a derogatory self-worth cycle that may ultimately destroy them.

Is it any wonder that many of us hide our struggles, disown our reality and live in fear of discovery and judgement by a society that has such rigid parameters?

Advocates encourage awareness, hoping it will bring compassion and erase the stigma that follows us.  It is often said others can’t truly love you until you love yourself.  Stigma makes loving yourself so much more difficult.  Being told daily who you are does not fit in with societies expectations or is not good enough is damaging, but I can see a shift happening.  We are starting to recognize all that makes us different is not necessarily worse.  We are starting to celebrate the positives and find ways to negate some of the “negatives”.

I believe it is the accumulative voices we raise advocating for ourselves, our friends and family that will demand respect of us individually and as a whole. 

When we value our contribution to this world and cherish ourselves in our entirety we will no longer fear stigma from without or within.

When My Son Was Admitted to the Neonatal Intensive Care Unit

 

Evan waiting to be admitted to the NICU
Evan waiting to be admitted to the NICU

When Evan was born one of my dearest friends had just given birth to a beautiful baby girl three weeks earlier. I anticipated lots of days happily sharing with each other our joys of new parenthood.   Unfortunately when my son was admitted to The Hospital for Sick Children’s Neonatal Intensive Care Unit my solid ground started to shift out from under me.

One day I was speaking with her on the phone when she told me how upset she was when they did a routine heel poke on her daughter.  (They poke the baby’s heel with a needle to get a few drops of blood for testing)  I am ashamed to say my response was not the supporting empathetic response she was expecting.  I believe I said something to the effect of….

“I held my newborn son down today while the nurse shaved his head and put an IV in his scalp because his arms and legs can’t support an IV anymore.”

Lorena, I am so sorry.  Your pain was no less valid than my pain.  I wish I had been a better friend.  I wish I had told you I know it is devastating to hear your baby in pain and not to be able to fix it.  I wish I had comforted you with the reminder that a few seconds of pain would never be remembered when held against a life time of love.  Xoxo

Evan was in the NICU for over 3 weeks, during this time we received many emails and messages of love and support.   My sister in law had called to tell me she wouldn’t be visiting Evan… she couldn’t handle it.  I didn’t respond to anyone.  I didn’t know what to say.  I didn’t know how I had gotten here. My ground had become shifting sands and I couldn’t find my footing.

I was suddenly the mother of a beautiful baby boy that held my heart in his little hands and I was frankly not sure what the outcome would be.  I was the mom who whispered a fevered “Thank You God” when they said they were just doing a heel poke.   I was the mom who guarded access to Evan with determination of a ferocious guard dog.  I allowed only immediate family to visit him and then not often.

 I couldn’t share… not my son and certainly not my pain.  I kept much of it bottled up, only to have it surface as ugly anger, jealousy, and just pure snarkyness.   

I was terrified for Evan; I hated not being able to help him understand why these people kept hurting him.  I hated looking into his big blue eyes and seeing the pain and fear.  Would he remember this pain of his first few weeks?  Would he associate it with me?  Would he hold me responsible for not protecting him from it?  What would the rest of his life look like?

The guilt was mine to hoard, no one could take it away from me.  I was his mother I had one job, to carry him and keep him safe.  I failed, I failed the one person I love more than life itself and it would change the course of his life.  It didn’t matter who told me that I wasn’t responsible.  Nothing I had done or not done had caused the umbilical cord to wrap around his neck.

I would wear and carry this guilt for years to come.    I no longer had ground to stand on everywhere I looked was only quicksand.

If your baby is in hospital please be gentle with yourself.  I assure you, this was not your fault.  Your baby will love you, and not blame you for any of it.  Reach out and let the others in…. they love the baby too. Pain can be lessened when it is shared.

What is your hospital story?  I suspect I’m not the only parent who has lost their way temporarily while mired in quicksand.

Protecting My Son’s Online Privacy

I have always struggled with how much to share on this blog.  I want to be able to share my journey, help other parents and provide a honest look into our lives.  The issue is that it isn’t just my journey.

Protecting My Sons Online Privacy
Protecting My Sons Online Privacy

My partner and I talked at the beginning about if we should use our real names or not.  Our thought is that it is unlikely that anyone socially connected to our son especially when he is older will stumble across this blog.  I do post on Facebook and my friends and family obviously know us and our son but I don’t expect they are going to share the blog with his friends when he is older.

I may change my mind about this in the future….  The internet is an entirely different minefield to navigate.

What are your thoughts on protecting the privacy of children online?  What do you share?  Do you wonder if one day their future employer will see your cute story on their potty training?  Let me know in the comments below.

Waiting for the other shoe to Drop

 

2015-11-13 14.03.18There are no guarantees in parenting, and many parents know the feeling of lying awake waiting for the other shoe to drop.  Parents of children with special needs are not waiting for the other shoe to drop, we are waiting for a big boot to come and kick us in the head when we least expect it.

When Evan was a baby the doctors didn’t really have any concrete answers about what to expect for his development.  Now he is 7yrs old and they still don’t have any.

When he was a baby we had an Occupational Therapist come to our home.  When he met all his milestones and took his first steps at age one she closed his file.  The relief I felt was immediate and amazing.  He was OK! He was going to be OK!

Yes I had noticed that he didn’t sit up straight like other toddlers, but his OT couldn’t be too worried, she closed the file so we were ok…. Right?

Wrong!   Sometimes when the therapist meets their targets they have to close the file and move on to the next child.   He has needed much more occupational therapy and other types of therapies over the years

What you also might not know is that some of the skills that you, your child and your team worked your butts off to achieve can still be lost.

Evan had been doing well in Occupational Therapy, but he aged out of the system. (More on this another day.)  In school the focus was on class work, and teachers are not trained to evaluate or provide occupational therapy.  My focus also shifted to academics instead of fine motor skills.  Therefore  when he saw his Occupational Therapist for a Screening she was very disappointed in how much he had lost in way of skills.  I have recently noticed that some things I had thought were resolved after years of speech therapy are starting to creep up again.   These issues are gradual and seem to be the result of not having consistent therapy.

Some children experience a regression that is sudden and can seemingly take skills and functionality away out of nowhere.   I was told about a woman whose child underwent a regression for several years.  This child forgot how to get to school, and could no longer find their way between two points.  i.e.  The parked car and a store down the same street.  From what I understand, they eventually began making gains again and retrieved that functionality.  These parents no longer have the luxury of waiting for the other shoe to drop, instead, they are waiting for a boot to kick them the head… again.

The scary thing is the doctors don’t have the answers.  Sometimes they don’t know what caused the regression.  Even if they do discover a cause they can’t tell you how long it will last, how much progress will be lost, or when or if the skills and functionality will be regained.

We parents try to be aware of what skills our children are developing, what skills they have and watch like an eagle for anything that seems out of the norm for them.

So, us parents of children with special needs might seem paranoid, or hypervigilant but we do have cause… I assure you it isn’t nice waiting for a boot to kick you in the head.

 

Adjusting Halloween Expectations

IMG_20151031_181217-1-1Every parent has expectations of Holidays. These visions will vary depending on Religion, Culture, and Individual family Traditions.
I expected Halloween with a 7-year-old to look like this:
Trick or Treating would be costumed children running in a pack from house to house in the race for MORE CANDY! I would have expected my little boy to argue or plead with me to stay out later or to go to just one more house. Later everyone would get together to rehash the night and compare candy hauls while eating themselves sick. (A time-honoured tradition)

Evan has what is referred to as high functioning Autism, so we have had to adjust what our expectations are. For us the important thing is that he has fun and that he enjoys as much of the experience as he wants to.

Most years he is sick around Halloween, this year we were happy because he was healthy and we weren’t dragging him out when he wasn’t feeling well.
He wore his Luigi costume that he chose with his dad and loved, and allowed his dad to paint a mustache on him. (I can’t tell you how HUGE this is)
We went Trick or Treating as a family, no pack of kids to race with but he was excited to run into a friend from school. He walked from house to house carefully navigating the stairs and the pumpkins. (He has balance issues) After little more than an hour he was done, instead of him begging to stay out he had us urging him to just finish the street before we went home.

We have enough candy said no child ever on Halloween…. Except for Evan

At the end of the night he was happy with his haul but didn’t ask for any.  I gave him a bag of chips which he quietly ate while going through the Avengers Comic book he got at one house. (Best treat ever!)
He had a great night, it wasn’t quite what we would have expected but he was happy, he participated and most importantly he had fun.

Have you had to change your holiday traditions or expectations’?

What I know about you.

What I don’t know about you and your family is a long list.  I don’t know where you are on this journey with Autism Spectrum Disorder; if you are just starting the evaluations looking for a diagnosis, if you are combing the Internet after receiving a diagnosis or if you’re so far down this road you deserve an honourary PHD.  I don’t know how old your child is, where they fall on this thing called the Autism Spectrum, I don’t know what their strengths or weaknesses are.  I don’t know how many children you have or what your support system looks like….

What I do know is this; you love your child!  You love your child so much you get up everyday and put on your big girl/boy pants and welcome the day.  Many days come come with challenges, but many come with triumphs too.  You love them so much you desperately need the world to see who they are beyond their diagnosis.

So, I don’t know your story and you don’t know mine, but if we can start from this common ground of loving our children maybe we can get to know each other a little better and share our journey.