Of tattoos, Pinkie Pie and weighted blankets

The picture above is the tattoo I got on July 21st 2012. The day after my 21st birthday. each birthday for me was another year I had succeeded in keeping myself going, of not ending it all, another year of being a warrior, another year of fighting my insides. And it is a fight.
It's funny my mother following seeing said tattoo said this:

"What madness have you survived?"

I laughed. I literally sat down on the floor and started laughing. Because to me it was so obvious it wasn't even funny.

It was at that moment I understood that in less you live with mental illness and cognitive differences you do understand. Living in my brain without going mad is a task and a half and it made me understand that I needed to find a way to make others and her understand.

That also is a hard under taking in itself because of lack of ability to transport you directly inside of my brain.

My tattoo is also a reminder that I am strong and I am made stronger by my experiences and my willingness to share


This week like any other has been exceptionally busy and I try very hard to keep up with this blog but you will have bare with me.

This week has been a long one. Or it feels like a long one.


To describe it would be something a long the lines of this:

First I want you to imagine a quiet humming in your head sort of like a bee, now it's quiet but always there. You learn to live with it and try to manage the humming in your head because you have no choice. (Normal people also have this humming but they have the ability to put it on mute pretend you don't have that ability).

 Now imagine there is a track list inside your head it shuffles according to how you feel (fairly smoothly for those who have a normal brain) NOW you have the humming in the background and the track list going imagine that track list is changing from one song to the next the humming is getting louder and all you can do is cry. YOU CANNOT STOP IT or control how fast the songs are changing or how loud the humming is.

 You spend all day focusing very hard on everything around you and trying to put out the right response and complete given tasks.

Now imagine your skin crawling with ants.

That was a description of what is like to live in my mind.
A few things that provide relief are deep pressure recently I was lucky enough to be given the gift of a weighted blanket.

Here I am chilling out underneath it looking rather tired out because I was. What is a weighted blanket? A weighted blanket is a blanket that has pockets in it which weights (usually rice or poly-fil) are evenly placed throughout it. IT SHOULD Be noted you should research/consult a Occupational therapy because it should only be 10% of your body weight which isn't much. Basically it's like a GIANT hug all over your body. It sucks all the tension out caused by all that mind babbling I described early.

I have had a rough week in terms of I am currently cycling through a anxiety/depression phase ( I vary in degree and severity). I had my first ever anxiety attack at work and had to cover it up due to the nature of my job keeping clients calm is supposed to be my number one priority. This is not my usual norm and then on the way home I had to pull over because I had yet another one. I came home and crawled under my weighted blanket and put on my Pinkie Pie hat.

Let me explain the pinkie pie hat, I rarely deny myself things that make me happy and feel good inside because my moments of happiness usually are moments I don't usually have a consistent stretch of happy. If anything it has taught me the small things in life are the best things in life and that includes moments.

While the pinkie pie hat has raised some rather unwanted comments from adults which I could care less about.

The truth is people with disabilities often experience other medical issues and I worry with age my brain function may deteriorate which may or may not be a reality, but I choose to live my life like each day is gift. So why would I waste whatever time I am given to live weather it be to 100 or not worrying about other people think of something that makes me happy.

While this has been a rather random and general blog it's at least something!

Jess The Brave,

You don't know how many problems could be avoided if...

Now that I have calmed down considerably I've decided I can post here without sounding totally off my rocker.

People have this habit of not addressing issues when I bring it to them.

This makes me anger because I AM cognitively aware enough to know when and when not people are brushing me aside. They also happen to be important to me and by giving me a straight answer and putting said worry to rest it might just make my life easier/eliminate many hours of anxiety and tears....but you know people don't seem to be able to do that. and. it. is. driving. me. mad.

I want to add this needing to "know" isn't just a part of my disability(which needs structure) a and suffering from some pretty serious anxiety.

 Needing to know as humans makes us feel safe. If one thing I could tell parents and all the health professions (mental or physical) is that we need to know and we need to know the truth. And no matter how stupid or insignificant you may think the question is, it isn't to the person asking it.

Maybe because of my disability people feel the need to water it down or hide it form me, but it isn't helpful at all.

Yes my timeline of worries may not be current but they are valid worries and do you know how much of this:

COULD FREAKING BE AVOIDED.

The latest conversation that went something like this:
Jess: "It says here that hep B, and a bunch of other vaccinations are required, is getting exempted going to be a problem?"
Responded: "No, don't worry about it we'll deal with it"

OF COURSE I AM GOING TO WORRY ABOUT IT. GIVE ME A STRAIGHT UP ANSWER FOR HEAVENS SAKE "We'll deal with it" IS NOT A STRAIGHT UP ANSWER. UGH! I NEED TO KNOW definitely the answer and if you can't then don't freaking sugar coat it. I'm not stupid.

People seem to think because I'm disabled they need to sugar coat the hell out of things for me. Why? I don't know? I'm disabled which means my brain is wired different and my anxiety level is extreme, but I work full time, I pay taxes, I drive a car, I contribute to life. Yet everyone is afraid to upset me. Sure the truth might temporarily upset me but it gives me REAL info I CAN use. With that real info/the truth I can then work to find a solution and yes this may be something months down the road but clearly I NEED it addressed now because it's bothering me.

How hard is this?

And this blog post hasn't been informative at all or even beneficial to anyone but me who got to vent my frustration. And sometimes I need that. Because I live in a world not built for the likes of me. and apparently I need to work better on communicating my needs without sounding like an agressive raging mess.
Ugh

Jess the brave,

I am descended from warriors

Well Actually it is pretty common for me to get stuck on one task singularly. And honestly I didn't think I'd be connecting my crazy research spree to this blog here.
Let me start with a picture since it seems my creativeness is becoming saturated in this blog.

Meet Alexander Fraser Born 1878, my great great grandfather. A strong tall Scottish man. He fought it the boar war when he still lived in Scotland for five years not an easy war at all to survive at all I cannot determine if he was in South Africa or India. Either way surviving for five years as a volunteer (yeomanry) Calvary member is simply a testimony to the fact he was a Scottish warrior, he was a warrior. 

It's funny how this conversation happened with my mother.

Me: "I was told he wasn't a very emotional man"

Mom: "He was a warrior, and that was who he was"

In 1914 he took his family and came here to Canada. and enlisted in WW1 in which he sustained a bullet injury which left Sharpnel in his body. He did NOT die during the events of WW1 but came home and continued to slowly die. 

The man was digging a ditch when pain over came him and he was rushed to hospital where he died.

Digging a ditch.

When I was told this piece of information my star trek nerd-ism kicked in and my line of thought went "he deserved to die a different death, he should have died in battle a warrior like he was in battle"

Like a klingon from the Star Trek series he should have died with honor

And than I remembered not all battles are fought in a battle field.

Alexander Fraser died honorably and I refuse to believe other wise.

You see he was always poor in Scotland and here in Canada. He was fighting a battle. He was fighting to provide for his family. A family that may have been put off by the affects of war. Because I imagine mental health wise this man would have had many battles. He provided for his family and his quiet stern nature I like to imagine in my head was his way of protecting himself from fear of loss and from letting others know his strong warrior heart had been scarred by all that he had witnessed in war.

In many ways I relate to this man, and I feel strong knowing I descended from such a strong warrior that his blood runs through my veins.

You see I am fighting my own battle with mental health.

Yup I said that word "mental Health".

I am fighting an enemy I know yet don't. 

You see I was never properly diagnosed with depression.

I walked into a clinic saw a doctor, told him how I was feeling and he wrote me prescription for a anti-depressant. Without sending me to a psychiatrist (which I had seen as a child that's a conversation for another day). And I have been taking it blindly for about four years. And still suffering for it.

I am learning more about my inner demons recognizing the effect it has on me and what it does to me. and am now in the process of trying to get properly diagnosed on all ends of things. and that is not easy. I LIVE in a rural area where quality of care is minimal and as soon as I turned 19 years old three years old services for people with my level of disability went POOF.

Because I do have co-occurring disabilities you often have to acknowledge the symptoms of one in a medical setting and try and isolate the specific thing you need to deal with, most medical professionals aren't interested in this what so ever. Who wants to deal with a 21 year old adult sobbing and having an anxiety attack to deal with something completely unrelated physical symptom? NOT many.

Is there such a thing as not-disabled enough. Some days it feels like that. Honestly my level of functioning in different areas is higher and than lower than others. I work a full time job and outside of that job which I am very good at my functionally slowly regresses. 

I am terribly smart. YES. To the point where it is the most unhelpful thing. NO one cares how much you know about WW2 when you can't remember to make your own bed or shower on a regular basis.

Neither does any 21 year old want to admit they aren't all at the same level as their peers yet, but I KNOW I'm not.

But I am good at other things. I

I like to think I am descend from warriors

and as I fight to find a place to be assessed, fight the lack of coverage and money to be assessed by someone who is kind and compassionate. As I face the reality that this is much more than depression and as the severity of my anxiety challenges me.

I KNOW I have strong roots. and that I to am going to fight and like my ancestor I will survive.

So my distraction has definitely been a lesson in humility and strength.

Love,

Jess the Brave

Mom VS Me

A description of my mother daughter relationship

but at the end of the day this is us

If you haven't seen the movie Brave then you need to immediately go out and get it NOW. I have clear interests they are as follows: Disney, Disney Princesses, My little pony, The british family, running, WW2, star trek, past eras, painting, photography, and there may be a few more.

But Disney is one of my favorites.
These pictures describe my relationship with my own mother.
Disney's brave is about a mom and daughter who are two very different people yet neither can make the other understand or see the others side. In till Merida makes a wish to change her mother.
I love the movie.

But this leads me to the topic of me vs mom.

I want to be free and understand that under the circumstances for my mother letting me loose on the world is a terrifying idea not for the world but for me. She knows that people are more likely to take advantage of me or that my street smarts aren't so savvy. She knows how people have treated me for the past. And as a mother it is her job to protect me.

Her and I have been locked in a struggle over my independence for a LONG time.

For all intents and purposes I am and can be 100% independent with some support.

My mother cannot be that person. And I understand that is a hard position for her to be in because as my mom she wants to be there for me. But now she can't be there for me in a position she wants to be. The problem is she can't be objective to the situation and step back. And I love her for that. That no matter what she'll be there for me no matter what mess I'm in.

There have been a lot of "telling" her "you can't anymore"

and I wish I could explain to her that it isn't because I love her it's because she loves me and I love her to much for her to be my teacher.

She is hurt and I know it's my fault.

We both are SUCH different people but both of us have inherited our Scottish ancestors warrior attitude and stubbornness. 

Only it sort of ends there in terms of similarities other then we look an awful lot alike.

and that is where it ends.

She is a very straight and narrow thinker and I am a chaotic thinker. We both arrive at the same conclusion just different ways. She tends to be more emotionally conservative then me where I am a compassionate walking around mess.

then there is the fact that I whilst suffering from the psychological effects of depression could launch off my rocker and she could lose me permanently. I never told her how close she did come to losing me several times. and I don't think I could. She worries enough. and now things are different while I still suffer from mental health issues I'm safe and healthy enough that I want nothing other than to live. I have my moments but am learning they are simply moments. and I am not alone.

I am not an easy child to raise. I am not what she signed up for, but what she got. and she has done her best. Raising a disabled child is not easy, I am not easy to live with, and I know I frustrate her.  

We clash. But I love her and as each of us is learning what it means to be in the others lives as adults we are clashing and it does feel like me vs mom an awful lot. But I know she loves me. and at the end of the day I hope she doesn't doubt that.

And maybe we haven't had our special brave moment where Merida and Ellinor after turning her mom back from a bear finally have a understanding, but hopefully we will. We just both need some time.

So happy valentines day mom! I DO love you.

Jess The Brave,

Please no new foods and sorry for the delay

I have to apologize because I told myself I wouldn't t let this lapse but with returning to work and attempting to settle into that schedule this blog has been on the back burner.

So without further to do I bring you ``please no new foods``

One of the things people learn about me that makes me feel embarrassed and often leaves me worrying that I have offend them is the fact that I only eat certain foods. Their isn`t really a logic pattern to the foods I will and won`t eat. But As it stands there are about 10-15 foods I  CAN eat. And many that I won`t eat.

To answer a question. Yes I have always been this way about food, though with the exception of a baby-toddler that is the only time I seemed to have no inhibitions about what I was fed.

You have to understand explaining my food issues is a complicated issue but first lets start with the sensory reasons:

Texture, consistency, and thickness
foods of certain textures I cannot swallow. To describe what it feels like to a non person it can feel like trying to swallow a hedgehog.

This goes for soft and mushy foods in terms of this: It if it to thin or to thick it is like something is lining my throat and suffocating me. I simply cannot swallow and I end up gagging and puking.
I can eat raw veggies but not cooked.

I often think I should have a swallow test done because I have this standing theory that my swallow reflex is probably weak.

Smell:
for some reason if a food smells a certain way I cannot eat it but oddly enough I find non-foods that I can`t eat sometimes smell good, but are of the wrong texture


and finally
My food cannot touch or be on the same plate.

It literally makes me stop breathing and sets off anxiety attack.

and for all of my life I have no way to explain why. I still don`t have a why.
My food weirdness makes me sad.
Makes my head hurt and drives me nuts.

Recently I switched to gluten free upon reading this article: The link between gluten and ADHD and AUTISM and this ADHD and gluten

So began strangely frightening process.
I don`t try new things. and if I do. It`s scary.
however exploring the alternative side of treatment for mental disabilities has become an important thing to me lately.

So I decided to try.
I didn't `t tell anyone at first and made it slow because I didn't `t know if I could handle this.
Or the texture change, but slowly I landed pretty much gluten free. Replacing the few foods I eat worked out well.
However this all back fired when one more

Going back to school and school in general

   Today I thought I would do a post on bullying only unfortunately it's a post I take very seriously and need more time to write and today it seems is not that day. I have been laying about and resting as I have a bit of cold coming on and I have been on a binge of non-gluten related products that doesn't seem to agree with me(being the only one in the house eating gluten free sometimes it isn't easy).

First off let me discuss school in general.
Yes I attended a normal public school and was in a normal public school classroom. I was not in a special education classroom.

 In Canada specifically the province I live in the process of inclusion and the elimination of special needs classrooms and separation of child with disabilities is a common goal. 

When I first started school in around 1994ish this was the over all concept disabled children were in the same classroom as everybody else.  Mostly because the majority of children were not to be diagnosed in till they were 8 years old. Missing those critical early years. Early intervention was not a priority  and as much as inclusion was now the norm the attitudes and education had not yet been provided. So there were many, many pitfalls to the system at the time.

I can remember teachers being maybe one of my biggest bullies and tormentors. Essentially only because they lacked the training to deal and teach a child with different needs. They had never been expected to before because students had been separated in the past and success for disabled children at that time period was not an expected outcome.
It was rough needless to say and a constant fight.

I also did not have a IEP except for one year.

A IEP is a independent education program. It is different and tailored to fit the needs of the child. So if I had a grade 2 reading level I would complete work at the appropriate level and also if I had behavioral issues it would be addressed how they would be dealt with. It meant I did not complete the same math work as everyone else though I would like to get a hold of that IEP now and see it (Though I am 21 now so not sure how it could be helpful now).

This was also the worst year of school for me. This teacher I swear never read my file and treated me in a way that made me feel so stupid even to this day. YOU do not forget stuff like that. By the time I was in grade 3 I was reading above grade level and struggled only with grammatical structure in writing and math. This teacher refused to allow me to read above a level of books you would give a kid in grade 1. I HATED IT. She also kept me in a lunch and would yell at me. At the time I did NOT understand that I hadn't done anything wrong and that I should have said something to an adult. But like any kid I did not know I hadn't done anything wrong she was an adult so what she had to say had to be true.

This is just a small snippet to try and give everyone insight on what going through the school system was like BACK when I went through it.
Grades 4 through 5 went well.
Then came junior high.
All supports disappeared.


This seems like a good time to explain what supports I had during elementary so from grade primary(kindergarten)-to grade 5.

I had what is called resource support from about the end of grade 1ish to 5th grade. Resource support meant I was removed from the classroom for a certain amount of time a week to help me stay on par with my peers and work on any needed skills I needed working on. I loved my resource teacher! I had her all the way up in till grade 5 when things took a turn for the worse.

She was not my resource teacher instead a previous teacher I had in grade 1 that I had hated, because she had isolated me from  my peers because I did not complete work in a group setting, and just over all didn't have a great attitude. This was actually the beginning of string of a loss of any support.

On top of resource support I required accommodations I could complete the work of my peers sometimes things just needed to be different to do so, quiet testing areas, work extensions, visual layouts etc.

Most of these weren't big deals. but the majority of teachers put up such a stink about it.

Anyway on to junior high. I received no services from about grades 6-8 it was hell. The majority of my accommodations ignored I did the worst I ever did yet some how passed. This was also the worst time fighting for accommodations teachers were still at the point where they were not educated on working with disabled students. In fact I'm not even sure what the heck was going on with that school?

Not the point.

What I really want to talk about is high school grades 9-12.
These were the best years of my school life. These years were filled with people and teachers who were AMAZING in shaping me and allowing me to develop my own skill sets.

I never had a teacher fight my accommodations ever. I thrived. I owe so much to that resource team for being so patient with me and ALLOWING me to become independent and find what works for me. I actually spent a lot of time down there. they were a family and I could pretty much come and go as I pleased.

I was actually the first in our school to be allowed to use a laptop in classes. My parents bought it for me in about grade 11 and it became a gateway into the world of technology.
I was also one of the first people in the province to type my provincial exam. Technology made expressing my life easier.

I graduated in 2009 with my peers, with a high school certificate equivalent and the same as them. With 4 year honors. A $8000 scholarship. and I was on top of the world. It felt like a big "Look what I did all you people who made my life miserable and treated me like I couldn't succeed". I was thrilled. I had the MOST perfect prom dress. the most perfect graduation. I still am proud of that accomplishment. Why shouldn't I be.
I feel as though I have not conveyed intensely enough what a fight it was to get to that point.

I did do two years of university.
Unfortunately due to several factors I did not succeed/thrive as I should have. Mostly based on a student help center that was supposed to be one of the best in Canada. Their attitude. Was not to ask me what I needed and what worked for me bu to tell me how it was going to be. I stopped going.  I also did not do well with dorm life.
I won't go into much detail because even though that experience cost me a good chunk of cash I did learn a lot of things. Mostly what I did not want to be.

So in 2011 I entered community college and took a teachers assistant course.
This experience wasn't exactly fun either but it wasn't so horrific as to never want to talk about it again. Years of distrust formed by teachers and a crappy experience at my last post secondary made me braced for more "You know nothing attitude".

The program was a year long and if it weren't for the friends I made in the course I think I would have quit. I LOVE being a teachers assistant I THRIVE off of working with children and I am at ease. The course bored me though as the text book work and I probably didn't put in as much effort as I could have I know this. The supports were okay... I passed end of story. They didn't really have a resource center where I could go and hang out and work. Which made for a very hard year.

And then I swore I was done. I graduated in 2012. I WAS D-O-N-E. Well that is what I said but I knew I wasn't.
My passion is leading me back to school hopefully in September.
This time I will be living at home while going back which means I imagine my mother and I will clash as I remind her I am 21 and she needs to remember this.

But while most girls hit up pinterest to look at cute outfits. I'm trying to figure out where in rural-middle-of-nowhere am I going to find a psychiatrist, specialists, and anything else I need to get sorted for September.

I'm tracking down assessments I'm mourning the fact that a pair of cute new shoes isn't at the top of my back to school list. I'm trying to hide the fear I won't be picked on because I am disabled, I AM worried they won't see my passion. I'm worried I'll be faced with shoddy student resource options again.

Going back to school isn't so simple for me.

BUT this is what I want the world to understand.

I can do anything you can do. I just need to take a different path and it may take me longer. I may not look as good and smart on paper, but I AM smart and I am able. Don't treat me otherwise. Do not discount my experiences because they are important and provide insight. Treat me like a person.

So as I sit here going through my resume and preparing it, trying to write a letter about "why" I think could succeed at this I'm trying to imagine I am that girl who has no other worries then cute back to school outfits and making new friends while remembering I have value and that I am strong enough to do this. I think I forget that way to much.

Yours,
Jess the brave