Archive for the ‘special needs’ Category

Screw you mental illness, just screw you.

March 8, 2016

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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!

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Let’s talk, just for a moment.

January 27, 2016

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I talk. A lot.
I talk because I’ve watched my child, my baby boy, fight for his life, for his entire life.

I find comfort and peace in talking. I do my best to explain mental health and illness, often complex, to try just try to get through to just one. One who need to know their not alone, or one who needs a gracious education. Because frankly if you or a close loved one hasn’t been affected, mental illness just isn’t something that is easy to understand. But I can’t just sit silently and do nothing, while it continues to be such a mis understood concept in society.
I talk. A lot. Mostly about my son. Not to often about myself. His diagnosis at a young age of severe anxiety, spd, ocd, major depression which morphed into full blown rapid cycling bipolar at age 12.
But here’s something many don’t know, it’s tough on a mama’s mental health too. And this mama has struggled with hers long before he came along. And here’s a few things even fewer know, and fewer yet know in depth.

I have seen my share of darkness, I’ve been raped, robbed at gun point, been suicidal, had anorexia, I’ve lost to many friends to suicide, I’ve lost some my biggest supporters, I have been alone in the darkness, I have spent years in therapy, and live with anxiety and add and maybe a bit of ptsd still.

So I talk. A lot .
I talk because I know. I talk because I survived. I talk because I want change and support and understanding of the importance of mental health. I talk because I want more people than not to understand that mental illness is no less real than physical, it can take you out just as fast.

I was lucky to be surrounded by a family that gave a damn. A family who walked me back to the light, who still does. But now they walk beside me while we navigate the cruel world of my son living in a world that just doesn’t quite get it. They prop me up when he crashes, which typically turns into my panic. I have that family. Not everyone does, and that is something I just can’t wrap my head around. So for those without the support, I talk. I talk for those who can’t or those to afraid.

I was lucky enough to not have a lifelong battle, but it was long enough. And long enough to prepare me for being the mother of a child who will have a lifelong battle.

So yes I talk. A lot .
And don’t expect me to shut up.

Here’s my post from last year

http://wp.me/pEbmv-7v

Bipolar STILL lives here.

January 24, 2016

Right now, life is well. But yes bipolar still lives here.
Looking at where we were last year, I’ve come to realize crisis and crashing times are soon forgotten, but when they are remembered, they are remembered as if they were yesterday.
You see when the monster that is bipolar resides under your roof, things happen and change so quickly you don’t have time to process the shifts before the next shift has engulfed you. Bad and good shifts. Getting comfortable is not likely an option. Being vigilant, present and aware are always here.
But I have chosen instead of holding my breath for the next shift, the shoe to drop if you will, to cherish and embrace every moment of this current and good shift.
There’s no way to tell when bipolar will crash down our stairs, but even while I sit and reflect and embrace the good, I
am and must be still very aware that yes bipolar still lives here.

http://wp.me/pEbmv-7i

Oh well!

November 9, 2015

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I am finding myself in this new phase of parenting. I truly believe that the core of ones parenting is in the formative years, and now at 12 & 14, I find myself not having to “parent” so much as guide and support. I believe my children’s person has been there since the day they were born, I also watch in awe at the person they now are.
As the parent of a high needs child, I look back at where we were, I see where we are today and I look forward with hope.
Parenting is chalk full of not knowing 100% what to do and how to do it.
All one can do is try. And I believe that oh wells are far better than what ifs!

Travelling the journey we have with dude, we’ve been faced with numerous hard decisions, when all we had to go on was crossed fingers. Yet we always dove in, if it couldn’t hurt, we’d do it.
Should we try this therapy? This medication? This test?
We have had a lot of oh wells.
But we’ve also had a lot of ah has!

Without taking those leaps, being willing try, we wouldn’t have our child here today.

I appreciate that diagnosis and treatment can be overwhelming and scary.
Often our first defence is denial, because truly in our hearts we wish perfect lives for our children. I also appreciate that the sooner you can work through that denial and onto acceptance, the better off it is for your child.
Denying the illness, disorder, etc will not benefit your child.
I also completely understand disagreeing with professionals from time to time, I know I have.
I always like to remember what my sons doctor explained to us when he was very young, and pass it on to parents ; diagnosis of children is extremely complicated. It may be years before the final and most accurate is made. Children’s brains develop differently, they also change while doing so.
With that information it’s good to remember that diagnosis can change as the brain develops. That doesn’t mean that a previous diagnosis is incorrect, it means that at that time it was a fitting one.
For example my sons doctor will seldom  diagnosis certain mental illness before a certain age, bipolar is one in which he airs on the side of caution when diagnosing. The only reason my son was diagnosed at 12, is because we had worked closely with the same doctors and therapists for 6 years, and his symptoms had always been the same, but at that time they were very clear cut bipolar symptoms.
Some diagnosis are made young, as they should be (autism, aspergers, SPD, etc).  Those diagnosis are imperative to early intervention and treatment. We had a handful of those and more as well. But others you have to bide your time to get to.
Along the way you may have a diagnosis that fits the symptoms present at that time. Another example ; my sons initial diagnosis included adhd, which is now taken out as those symptoms have evolved and are encompassed in his current diagnoses.
It’s tricky and complicated, and at times damn confusing . And a lot of work!  The journey tries your patience, it drains you. But honestly, as difficult as it all is, accepting and trying all you can, is worth it. Your child is worth it.
I will always take the oh wells over the what ifs when it comes to trying to help my child grow to be successful in his journey.
If it doesn’t all work, oh well!

My list for you.

October 28, 2015

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Our family has been on this special needs/mental illness journey since my son was 6. I’ve got almost 9 years under my belt being a mom to a child with multiple diagnosis. As such I’m often asked an array of questions, which I will always take the time to answer. I am not new to this area of motherhood, but plenty of people are walking away from a life changing appointment everyday. So I’ve created a list of things I wish someone had given me. Blunt, honest and real but with love, kindness and understanding.

1.  They are them, no one else. Having a diagnosis does not change them from who they were yeterday. And they are not their diagnosis, their diagnosis is simply a part of who they are. They are still an individual who has their own personality, likes and dislikes. Sometimes an illness can play a big role in these, but they are still them, don’t mistake symptoms for the person.

2. Grieve. Yes grieve the  life, or happy go lucky child, or expectations you had dreamt of while holding your new baby. Not because they won’t still be successful and worthy people but because reality doesn’t always follow your visions, and we all have visions. It’s OK to be sad, angry and heartbroken that your child will face hardships, appointments, judgement, criticism and disappointments many others won’t. All we want is the best for our children, and when they don’t get the best, it crushes a mom’s hear. So yes grieve, it’s OK to cry and scream and wish for easy.

3. Let go. Now once you’ve gone through the grieving process, accept the reality. And that reality can be just as amazing as your dreams. Accept the diagnosis and your child, accept that though we may not like it, it is, and denial will help no one especially your child. Let go of the what ifs. You will always have days of wondering why, but try really hard to not get stuck there. Accept and learn to live this life. Because it really is beautiful!

4.  Educate. Educate yourself and your loved ones on the diagnosis. I mean really, delve in. Learn all you can in order to support and help your child to be as successful as possible. Read, a lot. The old saying ‘what you don’t know can’t hurt you’,  is the complete opposite when it comes to your child and their needs, what you don’t know CAN hurt them.

5. Commit. Yes seriously, being a special needs parent is isolating, time consuming and expensive. Commit to your child, and all they need. You might miss out on coffee dates and parties, oh well! You are the biggest part of your child’s life, you are often the only person who truly gets it. Yes you will put many miles on the car, you will be nurse, doctor, therapist and pharmacy all at once, all the time. You will need to do things at home more important than homework, you will have to make sure things run smoothly. Sometimes it’s hard and it sucks and you don’t sleep for months. Be patient. Because when you commit the time to the special needs of your child, one day sooner than you think you will see the successful outcomes of doing so. Those hard moments will become easier and you will catch your breath and be amazed at how far you and most importantly your child has come. We only have them for a little while.

6. It’s not about you.  Sorry but your child’s special needs are not about you. Don’t make them such. Of course they impact you, of course as a parent you struggle along, of course you hurt for the struggles your child will have. I can honestly say I have not once asked “why me?”,  because I am not the one living with it. Sure I’ve wished my child’s life was easier, that he had an easier go. My heart hurts often, but not for myself, for him. As exhausting and hard as it can be for us, imagine how exhausting and hard it is for them. We are the parents, not the one living everyday with battles only ones self can truly understand. Be empathetic and sympathetic to them.

7. Advocate. You will most definitely have to find your strength and your voice. And when you do (it may take some time), use it.  There’s more people who don’t understand than do. Your child can not advocate for themselves, you must become mama bear. In the school, in the doctors offices, in society. You’ll face unrelenting critism, discrimination and up hill battles, fight them. The more you do, maybe one day there will be fewer battles to fight. Take care with this role. Be kind but be firm. Educate but don’t belittle, ignorance truly is bliss. Be graceful while fighting the battles.  You are your child’s voice, use it well.

8. Be kind to yourself. Don’t expect to know everything, don’t expect to get it all right all the time. You can only do the best you can with what you know. And because the life of a special needs parent is ever learning, I promise you that doing your best is better than doing nothing. Forgive yourself for the mess ups, it’s OK! You are doing the best you can, and that IS enough. We are human after all.

9. Support. Reach out. Make sure first and foremost your child has the support they need, but also that yourself and other family members (especially siblings, as special needs can be confusing and frustrating for them), also have support. Be it friends, professionals, family or all of the above. Support is crucial.

10. Love. Nothing is bigger than a parents love for their child. Love them, as they are, not for what you want them to be. These kiddos teach us so much. The little moments become big moments and life is appreciated that much more. We are often reminded just how precious life and love is, we don’t take it for granted. We love deeply and we love the good, the bad and the ugly. Because we know that even the ugly is beautiful.

Wishing all starting the special needs journey, love, strength, patience and kindness. You are amazing!

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Control freak with add and a side of anxiety.

October 14, 2015

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I am a control freak.

Here’s the thing, I have to have a very rigid schedule, things very predictable and structured to successfully adult, because adulting is over rated and not as easy as we are led to believe.
I also have severe add.
I’m a control freak with add, and a side of anxiety.

But guess what? Bipolar disorder isn’t structured or scheduled. And learning disabilities don’t follow the calendar.
Dammit anyways!

This year our son with the above has transitioned from public to homeschooling.
A control freak, add mother homeschooling a bipolar, OCD, spd, severely anxious child? Almost sounds like a sitcom in the making, but nope it’s the reality show of my life.

I, the control freak, add mother, am now in control of his education. Seriously? Who thought me being able to adult was a good idea?

It almost makes me laugh. I hate the boxes we try to conform ourselves and mostly our children to, yet I am trying to cram the way he is learning at home into that invisible box that is the typical school calendar. I laugh at myself because part of the reason he’s home is to be able to work at his pace, the other part is to relieve the trigger that is the pressure the typical school setting.
Yet the control freak comes out everyday and I do just the opposite!

Don’t get me wrong, he’s 14, I’m not about to hand over the education reigns completely over to him! No way! Because if he was given the reigns his classes would be ice cream testing, video game 101, and music 201!
But we’ve done a new schedule every week for the last three weeks because I must have a schedule. And it must be followed…
No room for computer outages, no room for a rough day, no room for error! Who am I kidding? “really self?”  I say to myself,  “you are maybe being a bit ridiculous!”.
I have been having some serious self conversation with my control freak self. Because guess what? Life doesn’t follow my damn schedule, that’s what!

Work happens, yes I’m a homeschooling mom whose not even home to school, ha!
Technical difficulties happen, and shit happens! Often that appears to mean my two days off are spent pressuring, nagging and cramming his education into a few short hours. Because that’s helpful!
I fight not to tell him how to do it quicker (you do know that it’s really easy to skim and answer when homeschooling right?),  all to appease that dreaded due date. Yes the due date I’ve set.
So far I’ve refrained from telling my child to cheat or take the quick and easy route to get done faster, so far I’ve been an adult. See again I ask, who thought putting me in charge of adulting was a good idea?
Not to mention I’ve time travelled back to grade 9! And I don’t even know how I passed grade 9!
I’m a business woman, a florist, a mother and a control freak with add and a side of anxiety. Not a teacher for heavens sake!

But guess what folks? It’s what my kid needs, so a quick study I shall be! I guess I’ll be getting both a grade 9 education and an education education all at once. Bring it on!

Life is about curve balls changes, like I said it doesn’t seem to care about my damn schedule. So I suppose I will put myself into control freak recovery, maybe even buy myself a mug, and simply control only the things I can control. Like my add with a side of anxiety.

Beautiful weeds.

September 27, 2015

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Some weeds are beautiful!

I have always accepted that my kids are themselves, from day one. They are their own person, ones I am here to support, guide and love but the day they were born I knew that it wasn’t my job to tell them who or what to be.
I love their uniqueness, their character and their individuality! And I love that they are who they are, not what society, or I say they should be.

With being a weed though can come some lonely times.  When you live in a small town, it can be difficult to find like minded peers, it can be pretty hard not being a bloom in a row. And be the weed growing outside the lines.

Dude is doing school from home this year, and his best friends are on the other side of the computer screen.  He misses his friends from school, and that was the toughest part of his decision, leaving his peers who accepted and liked him, uniqueness and all.

I’ve struggled for years with the sadness that comes when your child says he has only one or two friends, and how it hurts a heart when that number drops. I just can’t wrap my head around it, I had tons of friends even if I was a weed, so it broke/breaks my heart that not everyone does.

The truth is though, this is a blip in time one day soon he will find out there’s so many weeds, beautiful, unique weeds that he will fit with!

It bothered me at first that his closest friends were ones he can’t physically see, I couldn’t wrap my head around how you can be so close to people you’ve never met. It boggled my mind.

It’s something many won’t agree with us on, to much screen time blah blah blah.
But here’s the thing, when your child has one maybe two friends, ones he doesn’t see often, I ask you what would you suggest?
When you have a wonderful weed that instead of looking closely at people just pick, how would you handle it?
You would probably be slowly coming to the same conclusion as I.
That even if we don’t understand the weeds ways, if they work, who are we to say they’re not ok?!

As this group of friends grows closer, and we parents chat with them, I’ve come to realize that these kids are weeds in their world’s, but together they’re a beautiful garden.
When dude explained that they make him feel confident, secure and accepted, I couldn’t help but be thankful.

We are in a different age than I was as a teen, than you were or our parents.

And I have come to realize I don’t care if friends are on the other side of the screen, I don’t care if they can come over and watch a movie.
I care that my child is interacting, laughing and able to be himself in a garden of weeds, instead of having to pretend to be a flower in a row. I am thankful that technology allows for friendship to flourish no matter where you live.

And if that’s not enough, him saying he hasn’t felt this good in years is. Funny thing what acceptance will do.

Yes weeds are beautiful!

*please note that I am not suggesting free reign to children and youth online. We closely monitor everything and recommend the same for parents.

The big bad conversation.

September 10, 2015

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Suicide prevention day.

To me, and many it’s not a day.
We don’t just talk about it for a day.
It’s life. It’s semi normal conversation, albeit a crappy conversation. But a real conversation that must be had.
It’s a conversation we find vital, and as important as any other. It’s a conversation that must be had.
It’s not just a conversation, it’s so much more. It’s a touch, a hug, a tear, appointments, meds, doctors, frustration, anger, heart break and unimaginable sadness, it’s support and love, smiles and laughter. All in the hopes of keeping suicide at bay. Or yes ultimately preventing it.

Yes it’s a difficult subject to talk about but one we must have. For so many reasons,and one that should be had by more people.
So many have been touched, but it’s still such a taboo topic, and those who haven’t been affected simply don’t, can’t understand. So the conversation is important. Don’t tell me it’s not. Suicide is a topic that in my opinion should be discussed, as much as diabetes and cancer. To take away the shame, the blame and the non accurate assumptions and the judgement, the all mighty judgement that goes along it.
So start talking. Today gives you the perfect opportunity.

Our reality, the hardest of all realities for us to understand or accept is: we don’t know. We don’t know how long our loved ones will be able to fight, battle, suffer and try before they can’t anymore.
All we can do is support, love and guide. All we can do is hope. Every single day we hope we can some how prevent the tragedy that so many, to many, suffer.
And to accept that we’ve done all we can, and will continue to do so and acknowledge and accept that sometimes we can’t prevent suicide.

But please remember those who die of suicide or are thinking of it, haven’t just had a bad day.
A day didn’t bring them to the last resort as a day won’t stop it.
Prevention is everyday, not simply a day in September where we band together. But if it can get the conversation started, and  resounding voices around the world, I am all for a prevention day.

http:// https://bestkids.wordpress.com/2014/09/10/lets-talk/

Back to school. Love mom.

August 27, 2015

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Next week you’ll be opening those big metal doors of a new school year.
Your backpacks and doors won’t be the only thing that is heavy and loaded down.
You will be full of nerves, excitement, uneasiness and happiness.
I want you to remember a few things, not just on this first day, but every day of the school year.

1. You are good enough! As you sift through the unsteadiness that comes with not seeing your peers, and the worries that come a long with not knowing if your friends from last year will still be your friends this year. As you walk into the new classroom with a new teacher and slowly take those steps to the new desk. And your tummy is in knots not knowing if anyone will talk to you. Know that you are good enough. And every other kid is feeling the same.

2. I don’t care about the other kids. OK I do, but please please don’t compare yourself to them.  I am not worried about what Suzy got on the test, I am not worried that your mark was lower. I’m not worried about Johnny being a math whiz, but you don’t get it. I’m not worried about the game being lost, or won. Did YOU try? Did YOU do YOUR best? That’s all I care about. You have your own talents and gifts, as everyone in your class does. Focus on YOUR talents and gifts while cheering on your peers in theirs. There’s so much more to life than classmate competition, others successes don’t take away from yours, be proud of yourself and your friends!

3.  Be kind. Be yourself. Be good.
You are perfectly you. Don’t let anyone tell you otherwise. Embrace and encourage the differences that others are. Don’t get sucked into the he said, she said crap. Don’t say anything you wouldn’t want being shared with the person you said it about, and you won’t have to worry. Be kind, to everyone. You don’t have to agree or even like everyone, but that doesn’t give you the right to be cruel. Same goes for others to you. And if they are? Hold your head high, walk away and talk to us. Same goes for the teachers. I assure you that you’re not going to love them all, or always like what they have to say. That’s OK. But you don’t get to back talk or be rude. They are a) the adult and you will respect them b) they are there to help you, use that. And appreciate and respect that and them, they are your biggest resources!

Love you and don’t ever forget that!

From caterpillar to butterfly.

August 18, 2015

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Just like that, those 8 seconds are gone. I’ve missed writing, but so enjoyed those moments of just being.

As my boy plugs through this life that so “kindly” cocoons at every corner he turns, I’m amazed often at how he works desperately to knock them off and fly.
His life is a constant caterpillar /butterfly effect. And that quite frankly sucks. But the beauty is so worth it. Those moments of anguish and pain are out weighed by those of pure and simple joy.

I look back 10 years ago, then 5, then 3, heck even that many months and I am amazed at where we are today.

Don’t get me wrong, bipolar definitely still lives here, anxiety and ptsd still reside in our walls, they’re not going anywhere. What amazes me is his acceptance, understanding and knowledge of each and how damn hard he works to overcome them. And how doing so has changed not only his life but ours.

For a 14 year old those things are astounding.
The fact that he can now tell us what he needs (to be left alone, a walk, to talk etc) depending on his mood has been a huge shift! The fact that he is able almost all the time to describe his moods (and if they’re just a bad day or cycles) is monumental in our world.

Often this summer I’ve watched him battle, literally you can see it on his face, to overcome and ultimately conquer things he would have easily avoided in the past.
It’s exhausting for him, and it’s heartbreaking for us to let him break those walls without being able to help. Wishing so bad that it could be easier, wishing so bad he could conquer the things that are so minimal to most, yet monumentus to him.
Watching the cautious steps he takes forward in his unsure steps makes my heart smile.

A lot of it has to do with having accepting and kind people around (even strangers!) while he’s taking them. The little words of encouragement from those who don’t even know our story, the family that just simply let’s him be until he figures it out , no pressure, and the people who actually make an effort to see past an illness that a) makes first moments sometimes a bit shaky and b)even when or if they don’t understand  they make no assumption or judgement based on an obviously big kid full of nerves they’ve never met but instead of an odd look they give a smile. And those that do know our story and don’t care, or do care enough to look past it, and realize there’s so much more to the kid than an illness.   His knocking those cocoons off isn’t nearly as difficult with you along the way.

But he continues to overcome the caterpillar and soar, and we’re proud. As so many parents are proud of the trophies and medals, we are proud of the simple things taken for granted.

Typically after the “butterfly” moment, we endure a week of the return of the “caterpillar”. But I will take all the caterpillars in the world for an hour with the butterfly!

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