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.

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.

Tips for hosting family with Special Needs for the Holidays

My Son at Christmas
My Son at Christmas

During the holidays families with Children of Special Needs have a very hard time.  They often want to be included in the family get-togethers and traditions, but they might not be the best plan for their child.  Sometimes this means they will turn down invitations, to keep from feeling awkward when things don’t go as planned or to make a difficult season as easy and enjoyable as possible for their child.

If you are hosting, these are some of my tips to make the time a little easier on them.

Always, the best thing you can do is to ask them what would help make their time as enjoyable as possible.  Let them know that you understand that they might not be able to participate the way they would have in the past and you just really want to be as supportive as possible.

  • Travel: If possible get them to come down a day or two early even if only one parent can accompany them. This will give them time to transition to the new environment and hopefully the travel will be a little less hectic for everyone.
Sometimes it takes a while to convince my son to use a new washroom, trust me you don’t want a house full of people during this process.
  • Have a place for the family member with special needs to decompress. The plainer (probably) the better, avoid holiday lights and over decorating. They will be happy to have somewhere they can go if they become overwhelmed. Let other family members know they may go there for quiet time.
Think of it like this: how would you feel after the longest day having to go into a big fun house with bright lights, loud music, people  jumping out at you… and you already have a migraine?
  • Food: This one is a biggy. Ask their parents in advance for any tried and true recipes or favorite foods. Try to have stuff on hand that they will eat, but let their parents know there is no pressure to eat the holiday meal.   It can be an overwhelming day and trying to get any food into them much less new foods may be asking too much. I feed my son leftovers on holidays that I deliberately make the night before because I know he won’t touch turkey or the rest of the holiday meal.
  • Noise: if you have them, let the family know that there is noise cancelling head phones available, or remind them if they use them they might want to bring them. My son can be often found with his hands over his ears, it has gotten better, but for really loud days we like to have them available.
  • Texture: if they have sensory issues that making unwrapping presents difficult, consider gift boxes, bags or my personal favorite, putting them in a pillow case.
Remember above all, this is your family. You love them, and while holiday traditions may have to be shifted a little the most important tradition is the Love. Give them as many hugs as you can and tell them what a great job they’re doing. That goes extra for their parents.

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.