Bullying : It’s not just for kids anymore; what to do when adults turn on other adults for the sheer “sport” of it all

    Bullying, we have all heard about it, seen it plastered all over the news, all over social media, some have been victim of it, some have had their kid(s) victim(s) of it.  With the advancement of technology this has become a rampant problem.  It’s no longer just taunting on the school playground or whispers behind someone’s back or even a note passed around the class.  Now it’s cell phones, tablets, laptops, desktop computers and social media that have enabled this to become more of an epidemic than just a “passing fad”. 

   We as parents that have kiddo(s) with special needs know all to well the harsh realities that our kiddo(s) face growing up in not only an age where technology makes it so easy to bully but also in an age where it also makes it the “norm”.  It is difficult enough having to deal with things like Autism (I know this for a fact) I grew up not having a lot of friends I was the awkward one that stood out for all the wrong reasons.  I was good at sports even ones I hated, I was writing my first book when I was in Grade 7 and although I didn’t have the money to publish it I did hand out the few copies I did get to a few people that still have it.  I was just different.  I got teased, I had my hair lit on fire on the bus once, I had my fingers smashed and locked in my locker, I had my nose broken, I had stuff stolen from me, I had ice balls not snow thrown at me…but those healed I mean whatever in the end.  BUT the things that left the biggest scars were the words of the other kids and how no one was in my corner not even teachers not once I got to High School.  Those words stung then and they do now, except now I know I had Autism then and ADHD – which would have made a world of difference I could have at least advocated for myself and spoke up but not knowing was hard.

    So that leads me to present day, and how even within the special needs/parents community other adults feel the need to pick apart other adults and throw them to the masses for the sheer “sport” of it.  They preach about how they are teaching their kids to not bully and to respect other kids with disabilities but you see their words and wonder if that is true.  They will rip into you like a lion into it’s prey if you dare say anything they don’t like because they can, then they will throw you to the masses on their FB page or other social media site because to them it’s about the attention they get from it.  You then realize where these kids get it from, they learn from what they see/hear from parents or parents friends or just by being on social media. 

    One of two incidents with myself personally is when I had found this page that wanted to help send goodies to Canadian kids in a care package of sorts.  I had offered my support and all was ok until one day when they posted something that just struck a nerve.  This person is young (19/20) no kids of her own and her own mental health issues, but she insisted that she knew all about Autism and what the funding was being spent on instead of services (research) is what she came out with and she just kept going off and posting links to outdated info and how someone at her school knows all about Autism and where the money is spent (find that one hard to believe since even the Government doesn’t know that much).  So suddenly I was on the end of an attack, she made threats to me, she posted nasty messages on her page and had the nerve to say she was calling CPS because I was “unstable” and my kids needed a better Mom.  She had me banned for 48hrs off of FB because I posted (with no names mentioned) her responses and messages to me and just kept at it.  Even had the nerve to message me 4 months later and poke the bear again so to speak. 

    Second incident was someone posting how they had gotten a trip to Disney half paid for and this is at the beginning of all Disney’s oh so lame attempts to “accommodate” special needs people better.  I had no idea what I said that was so bad – I remember sharing a link to a page that was advocating hard to get Disney to not take the route they were, and mentioning how it would be interesting to see how it went with the new system…but suddenly I was on the end of a ban from the page and her hateful words.  Her son has a few medical issues but I had been supporting her page and son and offering up anything I could to help for months.  Just like that people can turn.

   So that leads me to wonder – what are these people thinking?  To me it seems they want the drama and attention (despite their delusions that I was causing this not them).  As adults we should be behaving better than that, it’s showing our children and friends that hey it’s ok to do it because I am me but no one better do that to me or my kid.  But what can we do about it?  How can we do anything when these people seem to keep at it?  The first time I responded and fired back, the second time I just ignored them and made one statement without naming names and walked away, which only made them mad and they kept at it.  I still didn’t bite.

    It is so much to take in and deal with when they seem to have such a big audience and like minded people always seem to end up together.  How do you deal with it?  How can you overcome it?  If you think about it this kind of thing can go on forever, ruining you, your family will turn on you, friends.  People need to help start a movement is what it is going to take, to make these people be responsible, to get laws put in place out here – cyber bullying is still bullying.  I am proud to say that Canada is implementing a Cyber Bullying law after far to many young kids have committed suicide over cyber bullying in the last year.  Two really high profile cases got our Governments attention and they realized that something had to change and fast.  This law is going to help protect ANYONE that is a victim of Cyber Bullying and these bullies can and will be punished by the law.  But we as adults also need to pay more attention to what goes on – whom our kids are around and what they are doing online.  We also need to raise more awareness for ALL victims of Cyber Bullying – adults are not exempt – but are often over looked because we “should be able to handle it” but in reality we need people to support us to, we need people in our corner to. 

    I think there needs to be more accountability out here on the internet, there needs to be laws in place online just as there would be offline.  Bullying is bullying – it knows no age limit and no boundaries.  It needs to be known that it wont be tolerated no matter what the age of the person bullying or the person they are targeting.  We must stand up and speak out about this and start a movement in the right direction.  “never underestimate what a small group of people can accomplish” indeed a movement starts small but together we can make it big and make people think twice before they target people just to get attention or simply because they want to sit back and watch the masses go after someone for no real reason.  People need to stop being sheep and buying into this and think before they act.  This is the only way that this will stop.

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“The most impor…

“The most important things are the hardest to say. They are the things you get ashamed of, because words diminish them-words shrink things that seemed limitless when they were in your head to no more than living size when they’re brought out. But it’s more than that, isn’t it? The most important things lie too close to where ever your secret heart is buried, like landmarks to a treasure your enemies would love to steal away. And you may make revelations that cost you dearly only to have people look at you in a funny way, not understanding what you’ve said at all, or why you thought it was so important that you almost cried while you were saying it. That’s the worst. I think when a secret stays locked within not for want of a teller but for want of an understanding ear.”

STEPHEN KING

I think this sums up how it is sometimes being an Aspie…or at least for myself.

We all struggle sometimes

It’s no secret – sometimes we all struggle.  The problem is not that, it’s the fear that someone will judge us for it and the sting of unkind words when we are already down.  No matter what we do someone is always going to have something not so nice to say.  The people that usually say these things are people who don’t have kids or don’t have special needs kids.  Their view of what goes on is so skewed that it is unfathomable. 

I remember one person on my FB page had this obscene notion that our kids are given electric shock therapy and all these outlandish ideas.  I am not sure where they get their info (probably Wikipedia) but that is not what goes on.  My kiddo is in school, learning to read, print, her numbers, she has been the class helper for a week and she helped clean up after snack and put the cups away and so on…she has learned at least 100 new words and can make full coherent sentences. She is blossoming into such an amazing little girl so full of energy and humor…I have never been so proud of her.

I know that not all kiddos on the Spectrum can talk but that still doesn’t mean we give them electric shock therapy.  It’s these misconstrued notions that make it so hard to break through the stigma, it makes it hard to keep these people with their half baked ideas and harsh words from spewing their ill conceived words and thoughts towards us.  

So what do we do…well we fight back harder, we try to educate more, advocate harder, work towards helping people understand better.  It’s a spectrum, it’s reaches are far and wide…but no matter where your kiddo(s) fall on the spectrum we all still struggle.  Some have health conditions on top of Autism.  Some have serious sensory issues, some do not, some talk, some do not, some are high functioning, some are the middle of the roaders and some are lower functioning…but regardless all deserve to be treated fairly.

No one deserves the harsh words of those that are not wiling to understand or those who just want to be negative just because. We battle this on the playgrounds, our own families, people we thought were friends and we battle educators.  It often can feel like at every turn there is another battle waiting for a parent that has a child with special needs.  It can be really  upsetting, it can make you angry, it can wear you down and wear you out. 

I don’t get why people have to be so harsh to other parents, what is worse is another parent that has a kid with special needs as well – those ones sting the most.  Some just want attention, some want you to engage in a drama fest and others just have their own issues and would rather hide behind those than actually do something about it and be more respectful to others.

We as parents, Aunts, Uncles, Grandparents get worn down enough from dealing with the stresses of having kiddo(s) or being apart of the journey that is Autism and other related things.  Why is it that we have so many uphill battles to get people to try and understand, to educate them in a good positive way about our journey’s?  No good comes from what these people do to us and others in our situations.  I find it rude and disrespectful…I do not like those people and I will never ever try to change their minds because there is nothing that can. 

I have had one person threaten to call the cops because I was “unstable” oh and CPS to – they even said that they would be here within the day…yeah uh sure I am “unstable” because I work hard for my kids, because I advocate, because I am home with them working with them, their therapists, their IPP (IEP) team, with teachers and support staff, because I take them to all their medical appointments, because I have to make tough calls on what is the best course of action for my kids (be it taking Cam off his pump or not backing down when it comes to what medications they need etc), or making sure they are fed, clothed and have everything they could ever need.  My house is clean, they never go out with dirty clothes or faces,hands etc, I sacrifice sleep, time and energy making sure they have all they need and more and I would NEVER change it for the world.  I know you can understand – our kiddo(s) are our worlds, and if someone doesn’t have kids, and knows nothing of how freaking great our spectrum kiddo(s) are then their opinion and words should not matter.  It is easier said than done but with all the other battles we face we have to find a way to push these people and their negativity out of our lives.  We are warriors in our own right and we must not give up the fight to educate those that want to be, and to help those that want to understand our situations better.  Never let the negative people rent space in your head or heart…we have bigger battles ahead and these ones will only wear you down when it isn’t necessary.  Remember NEGU.

The truth about being a special needs parent

I think anyone that has a child with special needs knows the challenges…the stares, the judgements passed, the whispers behind your back, the constant battles with schools, teachers, IEP’s and the insurance companies.  We are all well versed in the whole constant up’s and down’s – lack of sleep, the sensory overloads, the picky eating, and the endless new obsessions.

What about what goes on behind the screen, the things we don’t dare talk about on FB because who knows who might see it and judge us.  Our relationships with other parents, our relationships with our other kids, and our relationships with our significant others.

Things are NOT peachy here in this household.  Each of us is on the Spectrum (yes that does make things rather interesting and not always in a good way), but Kiana is Classic Autism, Kevin is PDD-NOS and the rest of us are Aspies.  Each of us brings an interesting piece to this Autism puzzle in this household…even more so when you throw in SPD x3 and ADHD x3 and ODD x1.  It’s like one mystery after another, depending on what mood someone is in on what is going to set someone else off and depending on what someone says/does on how well things are going to go.  Meltdowns are not fun, sensory overload is rough and what is even worse – when 3 out of 5 of us are having issues and each of them keeps setting the other off again.  It isn’t pretty, it is what it is, my life.

What is it like with other parents, well I don’t get to know many people.  I moved from my hometown 2 1/2 years ago now and I don’t have much of a support network here.  It was really hard at first, and sometimes it still is but I have learned to cope as best I can.  But that is just the surface of things…

Things with Kevin and I were good until he lost his job then it was just way to much to handle.  I was just 4 months pregnant with Kiana at the time – 3 days before Valentines Day 2009.  Since then we have spent almost every day all day together – it wears a person down.  On top of that I am more organized, I get things he doesn’t (the whole spectrum thing) and I just end up doing most of the work load around here.  It is hard enough when you have your own health issues but then to have to cook, clean, organize, schedule and well take care of everyone.  I am resentful, sadly this is the situation my Mom feels like she is in, and it is in a big way just like that.  Unhappy, definitely – what can I do about it I don’t know – we have done counseling, we have done mediation, we have done lots of things.  I can only do so much and I get really burnt out.  Truth be told he sleeps on the couch, Kenzie and I are in the Master bedroom…we just can’t find common ground.  It’s hard with so much going on in one family to find that sometimes.

Having a kid with special needs is hard, we have 3 and our own issues.  It’s not fun, it’s not easy and I just want to get some space from it all but I know I can’t…I have to be here for my kids but it stinks when I have sacrificed so much of myself and it feels like I am not getting anywhere.  It often feels like I am failing at this journey, like there is just far more to this than I will ever get…meetings, paperwork, things to learn and know, people to talk to, therapy, medical appointments and all the fun stuff like that.  It can really wear me down and send me into a panic attack at times…but welcome to the life of a parent of 3 kids with big needs and being the one that gets to shoulder 90% of that on their own…no one said it was going to be easy…but no one said it was going to be so dang hard either…

What is with the blog title – what does it have to do with being a mom?

  I guess by now you noticed my blog title – well for me Music has ALWAYS been my escape, it put into words the things I was feeling better than anything I could have come up with.  “Music are what feelings sound like” and it’s true.

I can’t sing very well – ok at all, I am not coordinated when it comes to instruments (I played recorder, clarinet and trumpet and despite popular smart ass belief I AM NOT so full of hot air after all).  I didn’t join the band in high school and I think they should be thankful lol but those that know me know I was usually found plugged into my tunes and off in my own little world.  I could lose myself in music where no one would bug me and life was ok for a bit.

I still love my music, anything from Jimmy Cliff and Bob Marley to Maroon 5 and even Celtic and Jazz.  It helps me relax and escape the stresses of being a mom to 3 kids with such high needs.  It gives me a place to just let the worries, stresses and anxiety of life melt away.  If I am working outside mowing the lawn or if the kids are napping I plug in and tune out for a bit.  Indeed Music is for life…and it helps make my life a little better…so that is where the name came from,  My Twitter Handle is Music4lyfe79 (feel free to follow me there if you want).

Our life wth T1D – Diabetes Awareness Month

    For the first 5 years of my son’s life it was just him and I.  I went back to work before he was a year old and from then until he was about 3 1/2 I hardly got to see him.  He was with my Mom a lot and I was going to school in the morning and working until 10pm at night.  His Dad had bailed on us when I was 7 months along (something I have long gotten over)…so I had to work to provide for us and schooling was to upgrade and get a better job to secure a good future for us.  I went through school and came out with a Diploma in Legal Secretary, and Administrative Assistant and I tried finding work in those but it was slim pickings in that city.

I kept working and I really worked hard I got a job at a call center working for MSN (yes MSN as in Microsoft) doing technical support.  We were one of the top call centers for so long – we got visits from Microsoft reps, Microsoft swag, MSN swag, I was apart of a special group that did round table meetings once a week on what we need to improve and what we could do to improve it – we talked direct with Microsoft.  Those were some great times, I love my job, met some awesome people and got to enjoy time with my son after work.

When Cam was 5 we noticed that something was off about him, he was always thirsty and he couldn’t hold his pee – he was always going…we took him in for tests and the first time around they didn’t do the keytone test for Diabetes, the second time they did and it was positive.  Life as I had known it right there was about to change – A LOT.  We were rushed to Victoria (90 minutes from our house) and we had no idea what kind of things were going to await us at the Hospital there.  We thought a few days and we would be out.  Well that was an ill conceived notion.

The took Cam into a room and needed to get blood work done, my Mom went in with him and I was filling out paperwork (in hindsight that was probably for the best) all I remember is listening at the door and feeling so horrible, he was screaming and crying and they were trying to calm him down.  20 minutes later the door opens and he is covered in gauge all over his arms and there is blood ALL over in there.  He apparently didn’t like or take to the blood work well.

Anyhow he was diagnosed with Type 1 Diabetes – it was all so surreal to me.  I was lost, confused, scared, and wondering how we were going to get through this.  I was lucky though to have some good people in my life at that time, my friends Helen, Cathy and one of the best friends I have ever had Kyle.  Dang I miss that guy…he always knew how to make things seem not so bad and then there was Kevin, I had met him online when I was using ICQ (yes I know I am old) he actually told me Cam had Diabetes before the Dr.s did (didn’t know it then but he also has Type 1) and I just didn’t want to think about it but the Dr.s sort of let it be known that I HAD to think about it and that it was NOT going to go away.  They don’t sugar coat things that is for sure.

Anyhow we spent 10 days in the PICU at Victoria General Hospital.  All through Halloween we were in there and he was not happy.  We had a lot of training to do, learning about carbs, and insulin dosing, about foods and the glycemic index for foods, how some foods break down fast and others slow, how to handle low and high blood sugars and how life was going to be different, harder but doable.  It was a lot to process and get a handle on.

When we returned home from the Hospital it was hard at first, juggling blood sugars, food, blood sugar tests, school and work.  It sure didn’t come easy for me, raising him on my own and having to deal with all the things I did.  Not long after Kevin and I moved in together and soon I found myself having to deal with two type 1 Diabetics.

I have had to call the Paramedics for Kevin more than a few times, one time he was .08 that’s (0.08 mmol/l = 1.44 mg/dl) and when he gets migraines he gets low blood sugars.  It never ends, we have been in minor accidents due to sudden onset of a low blood sugar.  One time he got low and was heading to his Dad’s work truck to take his Dad some tools and he ended up in a ditch, we had to call out the cops, search and rescue, fire department and helicopters to try and find him.  It was down to literally the last ditch effort and one of the FIre Department guys went down a road he had been down 3 times and he just happen to spot the car.  So many thoughts run through your mind, the last thing you said to them, the worry about what you would do if they don’t find them, just everything and anything.  It’s really hard sometimes – blood sugars can drop so fast for so little reason.  They can also get high really quickly for many reasons, not enough insulin, insulin that has gone bad, stress, sickness etc.

What was a real kick in the butt was when my youngest Kalea spent last Christmas in the Hospital diagnosed with Type 1 Diabetes as well.  She was 9 months old at the time.  I thought I had it all figured out – and well I sort of did.  I saved her life, my persistence and nagging at the Hospital staff to test her blood sugar level resulted in a 27.8 (27.8 mmol/l = 500.4 mg/dl) on the meter.  They were in shock, and I was more or less resigned to the fact that I had known it for 2 days but no one at Children’s would believe me.  What a shock for me to in a lot of ways, she was so little and realizing her whole life was going to be finger pokes, insulin injections and watching the carbs she eats, getting enough exercise etc.  It was a tough pill to swallow.  I sure don’t recommend spending time in the PICU – so many little ones so sick, RSV was the case for us to so we were in isolation.

It’s not an easy life at times, but Kalea doesn’t let it stop her for anything – she is a hyper, happy and growing kid.  She is in the 75th percentile for height and weight and her A1c’s have all been good – she has made the A1c wall of fame all of her first 3 post diagnosis tests 🙂  You can still have a mostly normal life, you just have to be vigilant of your sugars and the foods you eat.  Always making sure you have snacks and insulin and extra supplies when going out.  You can’t let Diabetes be your whole life, sometimes you have to put aside the fear and worry and pursue your dreams.  Anything is possible with the right care and the right attitude!

A little about life as a special needs parent

I don’t think there is anything that can accurately describe how it is when you have a child that has special needs or as I like to call it above average needs.  So many people will try to impose their thinking on you, or offer up unsolicited advice because they know someone that has a kid that also has special needs or they read something somewhere.  It comes from all angles and although these people swear they are just trying to help – it really doesn’t help.

No two people are the same and that is never more true when it comes to kids with special needs.  What is going to work for one probably isn’t going to be exactly what another needs.  It’s more about trial and error until you get what works for you and your situation and kiddo(s) going in a good direction.  Another thing is that direction isn’t going to stay steady and constant, it can change in an instant or it can be gradual, but the thing is IT will change so you have to be prepared for that.

When trying to get a kid diagnosed or at least figure out what is going on and find the reason why, it is challenging, it is tiring, it’s difficult and at times it can make you second guess yourself.  I have found that giving up is not an option, never be afraid to seek out the answers they can make all the difference to you and your child.

For me it has been a long process, so much slipped through the cracks because those that worked with my oldest day in and day out never thought to maybe mention some of his other issues to me until he was 9 and we were moving away.  It had been staring at me in the face for years, “cannot sit still” “has a hard time paying attention” “has a hard time starting work and getting it done” “has a hard time concentrating on his work and is easily distracted”…finally we moved to a new Province and the teachers here said you need to get him checked for ADHD he is off the rails.  Sure enough between the school and his Dr. we got that diagnosis.  It was about a year later when his behaviors were not getting better only worse that we went back to the Dr. and after research and talking to the Dr. he diagnosed him with ODD (Oppositional Defiance Disorder) and all this on top of his Diabetes.  We have been through therapy, as a family and just Cameron, we have tried medications you name it but nothing is helping much.  I miss my little boy that was happy and not so angry and aggressive, the one that didn’t lie so much or steal things from us, the kid that laughed and had fun.  It just got worse and worse as time has gone on and I struggle to keep things on a good path at times with him…but I keep trying and letting him know I am going to keep going until we get this sorted out.

When it comes to Kiana I knew what I was potentially getting into when I found out I was expecting.  Knowing her Dad has PDD-NOS and there is a strong suspicion his Dad is on the Spectrum somewhere as well as his Brother (officially dx) I knew that the odds were pretty good and sure enough I was right.  I figured it out at about 4 days old that she was going to be just like her Dad.  I strapped her into her Carseat and got ready to go home after she was born and she just lost it.  She was screaming the whole way out of the hospital and home.  She hardly stopped crying for 6 months.  She hated the daytime it was loud and bright and way too much going on.  She didn’t like to be swaddled or cuddled or held a lot.  She wanted to be up on my shoulder or facing outwards – and had to be changed, fed, burped and sat in her chair or walk around with her again for an hour or so – in that order every 3 to 4hrs.  It seemed like she would never outgrow it but she did thankfully.  It took us a long long time to get her in a better sleeping pattern but I am happy to report that since she started Pre-K she has been sleeping better.  We have a set routine, Pj’s, teeth brushed, movie and bed.  She has been doing so amazing – learning, growing and just blossoming into such an amazing little girl.  I am pretty lucky to have such an awesome kiddo.

The hardest kiddo to deal with in terms of sheer time and energy it takes to deal with her and all her stuff.  She is 20 months but she has Type 1 Diabetes and ADHD with intermittent seizures and possibly Autism like her sister.  Her food has to be measured as accurately as possible – a simple thing like Gold Fish crackers – in order for her to have them I have to get a plastic bowl, weigh the bowl on the food scale, then zero it out, then add gold fish crackers until it hits the right amount of weight to equal the amount of carbs that it says that weight of crackers is on the box.  So 20 grams of gold fish are supposed to be 33 gold fish crackers which is 12 grams of carbs.  But the fun thing is – that isn’t always the case – so I cannot rely on the 33 gold fish are this many carbs – anything under can cause her to end up with a low blood sugar when I bolus for them or anything over can cause her blood sugar to be to high and that isn’t good either.

Before she eats anything or has anything with sugar/carbs she has to have her blood sugar tested which means a finger poke and then to measure her carbs.  Bread carbs and pasta break down slowly so it can drag out for hours that her sugars are all over the place and that means more finger pokes and if we are not careful keytones etc.

It’s not always easy to deal with all these things, no one can prepare you for the craziness of being a parent but in this case no one could have ever prepared me enough to take on all that I do.  But they are my kiddos and I will always be there and always fight for what is fair.  But it isn’t always easy…but then again that is life.

Welcome to my blog – a little intro

   Greetings to those who are here – or rather will be.  I am Karen, mom of 3 kids.  Cameron is my oldest and the hardest to deal with most days.  He is 12 and has ADHD/ODD and Type 1 Diabetes. He was diagnosed with Diabetes at age 5 around Halloween and it seemed like a death sentence so to speak then but since then I have learned so much and am ever so thankful for the info JDRF puts out.


Kiana is 3 and my middle Kiddo.  She is my little monkey; she has Autism and Sensory Processing Disorder.  She was almost non-verbal at age 2 and with a lot of work on both our parts she started to talk and put not just words together but sentences.  She is growing and learning so much – it really makes me proud of her.  She started a great Pre-K program and it has also done wonders for her, socially and just all around.  We still got a long road ahead of us but that is ok she’s worth every single road block and obstacle I face – she’s my little monkey!

Kalea is my youngest and a really “big” monkey.  She is the hyper go go go kid – from the moment she is out of bed until she goes to sleep again she is just on full blast.  Climbing things, running around and getting into everything.  She has Type 1 Diabetes, ADHD and an unknown seizures (not many but they happen and are non-epileptic).  She is 20 almost 21 months old and is in the process of diagnosis for possible Autism as well.  She’s Mommy’s girl all the way where as Kiana’s more Daddy’s girl.

We live in Canada (Calgary) and lead very busy lives between the kids needs and appointments and our own health and medical issues we are a busy bunch!  I hope you will stick around and learn more about our crazy bunch and get to know us and us you!