Archive for the ‘special needs’ Category

Bipolar Moments 

March 28, 2017

There’s moments, sometimes long moments, in our house that we forget bipolar lives here. Well we do, the boy who battles, he never forgets . It’s always there for him. It’s always raging a war with in his mind. It never won’t. 

 Some moments  he wins. Some moments bipolar wins.

It’s those  moments that the illness wins, that we’re thrust back into a fraction of his reality.  It serves as a reminder that bipolar still lives here, it will never fully pack it’s bags and get its ass out the door.  

It’s those moments, when everything from pop cans to nail clippers are taken away, that we are reminded of the pain our child lives with every second of everyday. Reminded that sometimes that pain is to much. Reminded that the illness at any given time could win the battle in the ultimate way.

It’s moments that my child, is fighting to be alive,that the do gooders, know everythingers make me want to scream.  In the moments that bipolar is rearing it’s ugly head, that I hear such wonderful advice: give him vitamins. Rub his feet with oils. Try this drink. Get him outside. To much screen time. Be positive.Blah. Blah. Blah. 

I know that everyone who says such, in my life anyway, means well but seriously be quiet. Not only have we tried everything but by telling people who battle an invisable brain illness that those things will cure? You are adding to the stereotypes and stigmas these people fight daily. You add to the shame they carry.  You are not helping. 

Bipolar, really any mental illness, is no different from any chronic or life threatening illness.  And as with cancer or diabetes some of those things may help,because they do, but they don’t treat alone. Take your judgment elsewhere, better yet toss it out the door. Oh! And fyi, there is no cure.

There’s moments of peace.  And laughter. Those are my favorite moments.  Or they used to be.  But as I watch and listen to my  wise 15 year old during the crippling and hard moments I am learning.  I am getting a glimpse into a mind and soul so deep and so fragile and strong at the same time. I am finding myself liking those moments too, as hard and horrible as they are. They are favorite moments in a different way. A way that many people would question. But what my child has and does teach me through the ugly and the tears? Those are lessons many people will never learn. 

I am a mom. A mom of a complex and complicated child. A mom who has feared the next bipolar rear. A mom who will never know how long I’ll have my child. A mom who has screamed and cried,oh how I have cried. A mom who has learned and fought and stood up. I am a mom with many many moments that are foreign to much of the mom population . I am a mom who wouldn’t trade any of those moments for anything. 

I am a mom who some moments  will ask if he needs a hug. I am a mom who other times he doesn’t get a choice.

Not an excuse. 

February 7, 2017

If I hear one more time that I use my kids as an excuse, or make excuses for them, well let’s just say you don’t want to be the person to say it. My children are not an excuse,  they are my reality.  And our reality is a bit different from many others. You not understanding it does not make it an excuse. Count yourself lucky if you don’t understand our reality, but do not assume you know or judge ours.

Being a kid/teen can be hard. I remember fun and laughter and friends and freedom when I think of my childhood.  There were hard moments but the good and easy outweighed the tough and hard. It is the opposite for my dude. As he inches toward adulthood and finding his voice he’s not only coming to grips with his illnesses but his childhood. His tough and hard outweighs the good and easy, easily. What he remembers anyway. You see a childhood of endless appointments, hospital stays,suicide attempts and bullying resulting in ptsd, has left much of his childhood locked in a dark box within his busy brain. At times fragments sneak out, but not to often. When they do,they often leave tears streaking my face. 

Surprisingly he is not bitter. Surprisingly he has grabbed his diagnosis and past trauma by the horns and educated himself,learned to cope, to function the best way his 15 year old self knows how. He hopes to share his story,little black box and all one day so people understand the difference between excuse and reason.

And with that I have learned, significant amounts of how his bipolar, anxious,sensory, ptsd brain works. I have learned that even when stable, life is hard to live for him. I have learned just breathing for another day, just coping with his brain for another day, is exhausting and frustrating. I have learned that even when there’s a smile on his face there’s still pain.  And I have learned there’s still days that he’d rather just end it all. 

Recently his sister has been having her own fight with the god forsaken anxiety. She’s not handling teenage years well at all. She’s full of panic attacks, self criticism and fear. A lot of fear. 

No you see my kids needing me is not an excuse.  My kids, illnesses or not come first. It just so happens that sometimes when they need me now, first, it’s not to make supper or run a bath. It’s to talk them through or off the ledge. 

It quite literally can mean life and death. Not that it should have to for parents, mom’s, to not be guilted about putting their children first. 

Bubbles. 

January 24, 2017

I need a time out. I need my bubble. 

I need a time out from the negative. The ignorance. The hate. The stigmas and the stereotypes. I need a time out from the mean and the cruel and the closed minds. From closed off bubbles. 

I try to be vocal. To use my voice, against those things. But right now I am tired. I’m tired of it all.  I am exhausted from the online bombardment of them. It’s sad. It’s disheartening  and it’s exhausting. And I need my bubble desperately. 

I don’t get it. I don’t understand. I can’t imagine how people  can so vehemently be against something they don’t understand or know, let alone a person or people they don’t.  (I suppose that some don’t understand why I’m not.  I don’t expect everyone to agree with me, that’s okay.  I do expect kindness. I do expect when disagreeing with me or others you not be ignorant or an asshole.)

 I suppose I actually do. Fear is often rooted in change. Change is scary. Being pushed out of your comfort zone or to actually think about others is tough. It’s easier to stay in the bubble we create for ourselves. To fit in with those around you, with similar bubbles.  But somethings need to change. And if you don’t consider anything other than what’s in your bubble. That bubble needs to pop. 

I asked the other day if your child was one of those who you deemed wrong or not acceptable, outside of your bubble, would you still speak the same? Would you continue to belittle, bash and hate?if your child didn’t fit what you deem acceptable. Would it still be they don’t deserve the same rights? Just because they don’t fit what’s in your bubble? Your children are listening. I feel for the kids on the fringes who will possibly fear sharing with their parents because of this.  They share our bubbles for a moment in time, they are though allowed to have their own, dont burst it because its different from yours. I fear one day parents may not have those children one way or another because they are so stuck in their own bubble. Let’s remember every person is someone’s child) could be your child.

No one answered. I am not surprised. However, I hope it made some think . 

I know I am not alone in my thoughts. I know that the world is full of us. I know that there’s troops of kind,caring,empathetic and open humans. Yet some days I feel like a minority in my thoughts and views. That’s okay.  

I am okay with being outside the bubble.

I’ll just make my own.  And it will be a bubble full of acceptance. 

I care about someone with mental illness. 

September 5, 2016
    • Do you or a loved one battle mental illness?  I have had the honour of raising a child, not done yet, a son who has battled almost all of his short life. He battles hard. 

      When we started this journey of parenthood, we did not expect this particular road. We have had to adjust to the multiple twists and turns that come along with parenthood, let alone parenting of a non typical child . I made it my mission to learn everything I could, from ptsd to bipolar to anxiety. Along the way I have learned more and more, not only about my child but about myself and others who live with illnesses that are not visible.  I care. A lot. 

      1. Acceptance.  Accept the diagnosis. Let go of your pre conceived ideas of mental health or that it’s not a “real” illness because you can’t see it . Accept that it is very real,and very scary. Accept that you will have to explain this,and much more repeatedly to those who question the reality. Accept that you will need to fight.  Denial will help no one.  Least of all those with the illness. Denial could in fact cost them critical help and support. Accept the reality and with that surround yourself with a support system and professionals you trust and move forward.

      2. Get educated. Research. Ask questions. Help your loved one do the same. It helps everyone to be prepared and truly helps in understanding the illnesses.  When armed with knowledge you can become a huge assest in the treatment and careof yourself and loved ones and aide in breaking down some of the societal barriers. Knowledge really is power and knowledge of illness is one of the most powerful components.  

      3. Advocate.  With the knowledge you gain you will be able to advocate more gratefully and well for your loved one or yourself. Our world is slowly learning but there’s still much to  learn. You may have to advocate in numerous areas of life. There is still a lot of ignorance and stigma surrounding mental health and often those living in the trenches aren’t up to the task of explaining or advocating for themselves. Be their voice and use yours. With each voice those stigmas and intoletances will become less.

      4. Be kind and forgive. To not only your loved one, but yourself.  Often as parents we feel guilty. Let the guilt go. We all mess up. We all make mistakes. Learn from them, forgive and carry on. 

      5. Don’t make them all about the illness.  There are times when the illness is all consuming, for them and yes you. At those times yes every ounce of everything is about the illness and getting through. Those people with mental illness have a disease, but they are not just a disease. They are so much more. They are human. Don’t solely focus on the illness part of them, focus on all of them. 

      6. Be positive.  This is not their fault. Nor is it yours. It truly is what it is. Absolutely there’s many tears,ample amounts of frustration and every emotion possible. No its not all positive, don’t pretend it is. Live those emotions, but don’t stay there and don’t try to find blame, there is none. Try to remember that this to shall pass. 

      7. Be patient.  There’s no quick fix. No matter how much we wish there were. There’s a lot of trial and error . With each individual needs vary. Mental illness is the least cookie cutter illness there is.  Try and try again.  Be patient with yourself during these times and most importantly be patient with those struggling. I promise they’re far more frustrated then you are. For chronic mental illness there’s no real cure, so getting to a point of stability will try all your patience, and you will question regularly when that point will tip. For many people with mental illness, you will eventually find what seems to work, and be treated successfully. In the mean time your patience also will be tried and tested. With mental health patience really is a virtue. And with it and hard work illness can be at least become manageable. 

      Cherish your loved ones and yourself, always ❤

Time out of reality.

June 26, 2016

image

With the school year ending and getting nearer to our little cabin in the woods being ready, it’s time again for me to unplug a bit.

This has been a learning year. A year where we stepped away from the traditional school system for our Dude and opted to start schooling at home.

I won’t lie. It hasn’t gone quite according to this mama’s plans.  But then does anything really with parenting, especially a child with unique needs?

Homeschooling is definitely not what I thought in our future, I am definitely not this good teaching mom. I actually suck at it. It’s not something I typically encourage even.

Self discipline isn’t a 14 year olds strong suit, let alone one whose got a brain that works completely different from the norm, one that over works 24/7. Or ones whose parents both work, who can’t be there constant reminding them to be on task.

I struggled immensely with the time lines, with structure, with almost everything being a homeschooling parent meant.
I beat myself up a lot. For a long time.

Then after hearing numerous wise words from people who are my support. I accepted that I can’t be all and do all.

I also came to realize that somethings are far more important than grades or finishing a grade on time. And those things were things we were seeing in our child for the first time in many years.  We saw happiness, stability and even a bit of confidence.

And it dawned on me; his health and happiness is priority. 
I’m not saying schools unimportant, far from it. 
I’m simply saying a break from pressure, stressors or triggers are not a bad thing, no matter your age.

When you are 14 and lived through and with what our 14 year old has, if he was an adult, he’d be having a break. Working on his work in a different way.

So I let that sink in and  let societies expectations go. That was tough.
I took a step back and accepted that a year of a slower pace is not the end of the world I thought it was. I took a step back and saw what a difference these few months have made and that what really matters had actually been accomplished. That life is to precious and short to worry about my or anyone else’s preconceived notions of childhood/teenage hood, life in general.

We are good.  Good for the first time in 9 years. And I’ll take that over almost anything.

And with that it is time to sign off for the summer. It is time to focus on recharging the soul ❤

Days like yesterday.

May 16, 2016

image

There’s days like yesterday that are scary and overwhelming.

There’s days dude needs his space, and there’s days, like yesterday I just can’t give it to him.
There’s days like yesterday  he himself knows that he can’t be alone. Where he doesn’t even trust himself and will ask to not be alone.

There’s days like yesterday that we check on him every 5 minutes. We get on his nerves. But he knows we get on his nerves out of love and worry. He gets it.

There’s days like yesterday that as parents our stomachs tighten and our hearts race and we hold on tight.

There’s days like yesterday where his little sister is left confused and scared and her eyes fill with tears of worry.

He is quiet on days like yesterday, but his mind is screaming.  And ours are on high alert.

There’s days  like yesterday  if I ask him if he’s wanting to hurt himself, he will reply that absolutely he does, he’s done, he can’t do it anymore.  But he won’t. Because of us. And I can’t help but hope that even 10 years from now, that will be his thought process,that he will hold on in those moments for fear of hurting those who love him, until those moments pass. Until the tomorrow comes.

There’s days like yesterday that when he’s tucked into bed safely, there’s a little sigh of relief, but then you tuck yourself into bed holding your breath, hoping and praying that tomorrow is a better day.

Then there’s this morning, when all is well and good. And you remember that there will always be days like yesterday. 

But that was yesterday.

Always learning. Never quitting.

April 24, 2016

image

This journey of parenting a child with illnesses and needs isn’t a new one for us, yet it’s always changing.
There’s no light switch or magic pill that makes it all better overnight. If you think there is you’re sadly mistaken. As parents we have a commitment to our children, and society, to be there, not just for the easy, fun times. But the hard, heartbreaking ones as well.

Here’s a few things I’ve learned

1. It takes time.
Lots and lots of time. That means you will miss out on social gatherings, volunteer commitments, date nights and everything in between. It means being present and listening to your child or hoping in the car to drive hours for appointments after a long crappy day at work, where a long soak in the tub is all you want.  Suck it up.
You have a window of time that is crucial to the wellbeing of your child. Choose them first. We as parents don’t always come first.

2. Medication is not stupid.
Nor is it a quick fix. Often it causes plenty of its own troubles for our children. But sometimes you have to stand your ground with all the well meaning alternative method selling friends and do what you need to do for to save your child. I’m not saying other solutions may not work, but sometimes it’s not quite that easy. For example my dude is on a 6 medication cocktail that without he’d no doubt be dead. You will face scrutiny and feel ashamed, don’t. I’m well aware that I don’t know the long term affects medication will have, without it we do know we won’t have a long term.

3. Find the right people.
By people I mean doctors and therapists. Please, please don’t just see a gp for your child’s mental health needs. Any decent gp will refer you anyways.  See the specialists, who have spent their lifetime learning about children’s brains, disorders and illnesses. Brains are the most complex organ in our bodies, a growing one more so.

4. Therapy.
One word. Simple.  If your child or teen is battling mental illness, I highly suggest therapy.  Our boys illnesses are chronic, we’re at a point where he doesn’t need therapy twice a week, he still goes  (albeit not as often) ,he did for many many years.  Having a team is vital. Find a good fit for your child, and go. I’m a firm believer that if your child needs medication to be stable, they also need therapy, until deemed otherwise. I can not stress enough the importance of a good therapist as a part of the team. The skills and support they give not only your child but you are measure less.

5. It’s not their fault.
They are sick to make your life miserable and difficult. They are not sick because it’s cool or fun. They are sick. Their behaviour will likely confuse and frustrate you. Imagine being inside their head. I know I’d want to crawl out pretty quickly. Mental illness is not fun, if your child is truly struggling I guarantee they’d like to be able to choose other ways to have fun or get attention. They’d also like nothing more than to have it stop. But since it might not, they’d probably appreciate not being blamed, made fun of or judged. I’d be mortified if a child with cancer or diabetes was blamed for their heartbreaking illness. I’m equally so when people are blamed for their mental illness.  The brain is an organ in the body, just like any other part of the body, it can be attacked by illnesses, and yes kill you. It’s real and it’s scary. Treat an illness of the brain as you would treat any other chronic, severe or debilitating illness.

My bipolar boy.

March 30, 2016

image

How fitting that today my husband and I will sit down with our sons doctor in hopes of some sort of game plan for the inevitable med change.
How fitting that yesterday I said to his pharmacist “I prefer to be proactive and I have to know how it will happen.”  when in the bipolar reality, we never know when, why and how things will happen.
And as mother, a mother who herself has to know plans and heaven forbid they change, the not knowing hangs like a dark cloud every moment of every day.

But today I am grateful as well.

I am grateful for my sons treatment from a young age. I am grateful for his learning and educating himself on an illness that never goes away, never will. I am grateful for his strength, for his compassion and his undeniable courage.
Most of all I’m grateful we’ve made it to 14.
We didn’t know we would.
We almost didn’t.
We don’t know how many birthdays we’ll mark on his calendar. We don’t know how many days we’ll have. We don’t even know how many moments of good we’ll have.
We don’t know.

For parents we sure don’t know much.

But what we do know is: we love him beyond measure. We will continue to fight tooth and nail to get another birthday. Another day. Another moment.
And every moment will be cherished.

Because we also know that our son has bipolar (and a gambit of others),  but he is so so much more.

He fills our lives with joy,love, laughter, frustration, heart ache and pain and we are proud.
He has taught us not only as parents, but as human beings. To see things a little bit different. To see things a little bit clearer. That the world is full of different. That the little things are actually big and that no matter how much darkness there is, there’s always a sliver of light.

We are proud.

And as we stumble through this whole parenting thing, we stumble a bit more parenting a bipolar child. But we will never fall. For we need to be standing strong when he does. We may stumble, but no we will not fall, we will catch our hero instead.

Because his life matters. Your life matters.
Because we will be his strength when his is lost. And we will always, always have hope.

World bipolar day.

March 27, 2016

Leading up to world bipolar day I will share some of my older posts, because well this is a journey.

(more…)

Screw you mental illness, just screw you.

March 8, 2016

image

Over thinking has always been a down fall of mine, probably always will be. Plus I always want to know the whys the how’s and all of the answers, and I must have an exact time line of when things are going to happen, and don’t try to change that or throw in a curve.

Enter the unknown of a child with mental illness.

Not a good combination.

Apparently mental illness, especially bipolar don’t care about what I want.
Apparently it doesn’t work on my time line.
While Dude is fairly stable, I’ve had to accept the fact that some days just plain suck. The saving grace at this moment is he’s pulling himself out of the dark fairly quickly. But those days still raise the bipolar radar.

Yet here I sit wanting answers, and plans, and concrete.

Can his inevitable med change happen at home? Or do we need to be prepared for a lengthy hospital stay?
When exactly, what day, will we need to do this med change?
How do I know if it’s specific life events or med related? And when exactly do we need to make a call?
What happens if he crashes hard? We know his flight or fight instincts kick in when it comes to hospitalization, so what exactly do we do, because he can’t be put in the car anymore by mom and dad ?
Will he survive a huge overhaul of meds?
What would he be like med free?
How can I prepare, all of us?
Why the hell do I even have to have these questions? Shouldn’t my teenager just be having fun.
What exactly can I do to make it all better?
I just want to make it all better.

It’s taken me years to accept that I will never know all the answers, but I still try. It drives everyone around me nuts, including the bipolar kiddo! I like to be in control, I don’t like not knowing and even less not being able to fix.
I won’t lie it sucks not having the answers to my never ending list of questions. Questions that play over and over again, because mental illness is relentless, it may give you a little bit of a break from time to time, but it’s always there and always leaves you with questions. Right now I’m having a hard time not knowing all of the answers.
Stupid questions. Horse before the cart questions. Questions I’ll never have the answers to.

Screw you mental illness for not letting me, for him, have the answers. Today just a big screw you!