Sunday, August 31, 2014

The Game Changer..

When we have children, we have  plans. They are not even out of the womb and we have plans.God did we have so many plans. To think back, we parents started planning our future and the little human we carried future the minute we found out we had created something wonderful. We had all these hopes and dreams that we wanted for our little ones. Maybe the next President of the United States or that professional sports player. Or maybe just a decent human being that we as parents could be proud of in our old age. All these plans that we put into place when we started having our kids. So what happens when you have something that puts roadblocks in front of your plans. Those little things that life throws at you, just to make things interesting.

I am not going lie or sugar coat things, that when a parent is sitting in a doctor's office hearing news that will forever change not only their lives but the life of their child, that there is a range of emotions that occur. No parent wants to hear that there is something ultimately wrong with their child. Whether it be a disease, a syndrome or a disorder. It doesn't matter how big or how small this "thing" is, its a game changer. You look at this child, this sweet, sweet child and all of us think to ourselves, quietly, Why them? Why does it have to be them? We have our periods of disbelief. That we can't fathom, just what this means. And there are some of us, that refuse to acknowledge what is going on. We see those plans that we hoped and dreamed about flash before us and they are almost like watching a balloon float into the sky. We try to grasp at it, but it is beyond our reach. We are all but lost to our emotions and that sense of dread. Most of us grieve, not for the child, but for what the foreseeable future will hold for them We grieve for the battles they will have to fight, as we know it is a cruel, cruel world out there. These feelings are very common when parents get news about their child, that alters the way they will have to live their lives. Its ok. Its ok to be angry. Its ok to be sad. Its going to be hard, but you will get through this. 

At times, when we get news about our children we want to know everything there is to know about what is affecting them. And we want to know how we can fix it. But for some, it isn't an issue of fixing it, its the way to live with something. Its how to adapt. Work with something rather than against it. Sometimes that means more doctor's appointments, medication or just changing your lifestyle to include every aspect of your child. Beyond the labels, there is still this child that needs to grow and prosper.

The important thing is when you get difficult news that concerns your child, is they are still the same child that you look upon with wonder. They are still the same child that pushes your buttons. They are still that little human, that made you parents in the first place. And without them, you wouldn't know what its like to be selfless or compassionate. They are the ones that teach us how to fight.

 You haven't stopped being their parent or loving them any less. Now instead of playing that one game you know the rules to, you are playing just a different game, with slightly different rules, but the team is still the same.

Thursday, August 21, 2014

The Jealous Parent...

I will be the first one to admit that from time to time I get jealous about things. I am, after all only human. I know that there are certain things that are beyond my control when it comes to the life that I live. This is a natural feeling. We all get jealous over the things that could be, the things we want or the person we all want to be. Anyone who sits there and says they don't get jealous, is lying to themselves.

For a lot of us parents, our jealousy is harboured through our children. Mainly because they have been pushed to their limits, whether it be through sports, academics or even lifestyle. But for some of us who have children that aren't quite part of that world, our jealousy is a bit different. It isn't a competition for us to see who's child is better at what sport or who got all the scholarships.  For us, its those moments when we have gotten to the point of no return with our children, when the stimming or the perservations are so bad, that we have that guilty, that very guilty thought of how we wish it could be different.  To have that one day where we don't have the world staring at us or telling us off.  To have that one school year where it isn't such an uphill battle with your child's educators. Or even to have that one thing, whether it be sports, a club or an activity, that your child is accepted into, disorders and diseases put aside. That guilty little thought does not make us bad parents. It makes us human. It shows that we want better for our children.

I think a lot of us special needs parents often look at things like dance, sports or band, as something we longingly wish our children were a part of. In a way we are sort of jealous of the fact that most children can do stuff like that and not have worry about their stimming or inability to relate socially with their peers. And for us parents, its hard to watch. We get that tinge of jealousy. As we want our children to have something like that. Now don't get me wrong, I know there are groups out there, that accept special needs children into their organizations, but they are very few.

The simple little things in life also strike a chord with us. Date nights, a dinner out (without the stares) or even getting the four things we need from Target. We don't mean to be jealous, but it would be nice if we could get out and do those things with the peace of mind that someone we trust is looking after our kids. Finding a decent babysitter that understands what it takes to look after special needs children are slim. Most of us are begging relatives or family friends who understand to come out to look after our children. There are some nights that we wouldn't kill just to not have to worry.

I write this and I want people to know that its not a personal kind of jealousy. Its more of a "Gee, that would nice.. " kind. Most of parents are happy to see things go according to plan. We love to see children succeed. And in the end we do count our blessings. We cherish our children. So please don't be upset with a special  needs parent who might be a little envious of your good fortune. I guess just be a little understanding that we struggle. Sometimes days at a time or hours in the day. And maybe after talking about the good things in your life, ask the special needs parent if there is anything you can do to help.

Sunday, August 17, 2014

The day I told Autism to F*CK OFF...

I know that I am going to get a lot of flack for the title alone. But please hear me out. I, like many other families out there, either are struggling with how to correctly care for our autistic loved ones or dealing with the outside world's prospective of what living with Autism actually is like, are tired. Tired of a lot things that get associated or even our reality when it comes to Autism. That doesn't mean to say that we dislike or hate our loved ones, but its to say that we are run down, tired, exhausted and quite frankly just a tad annoyed, again not at the person, but the disorder. Autism, like many other things that a human can have, has its moments of "WHAT THE FUCK IS THIS SHIT??!" We can hate a disease, as we see what it can to do people we love.  So with that, the day I told Autism to fuck off.

Anyone who reads my blog or follows me on Facebook and or Twitter, knows that I am a mother of three very awesome children. Three amazing little persons that I am truly in awe of.  But as a parent, especially looking at the two that are on the spectrum, I see their struggle with trying to find themselves. Trying to navigate through this world, that is magnified beyond my own comprehension. I see their struggle just to feel part of a group, no matter how hard they try, there is always going to be a time where they are not going to be accepted. I see their struggle just to try and understand tasks that are put in front of them. Things that can be so basic to you and I, are some of the toughest for them.No parent wants to see their child struggle, and yes I know that struggle is a part of life, but its two fold for those who have Autism. They have to work harder more than the average person.

I always say that life is what you make of it. Its going to be challenging at times or it can be breeze. Most of us special needs parents are presented with a nice wide range of difficulties when we try to make sure our children prosper and grow. It doesn't matter where we are or who we are with, since a good portion of  the general public refuses to educate themselves, we are always going to be up against those who feel the need to cast the stares, whisper under abated breath or even have the balls to come and tell us our children need to be institutionalized. No one is going to do that if your child isn't stimming, flapping their limbs or screeching like a banshee because they can't help it. No one is going look at you twice if your child is sitting quietly in a stroller. For some reason, its ok to do that to parents and caregivers of those who are Autistic.

As a parent of special needs children, I am well within my right to be annoyed and angry at something that causes my children strife. I am allowed to feel the way I do, as I am the person that eats.sleeps and breathes what causes my children to struggle. I know in my heart that it isn't my children's fault that this is the life they were given. But god damn it, in my sleep depraved state, I am allowed to not like disease or disorder my children have.

So on those days, where the ignorance is running high, I am working on maybe 2 hours of sleep, the stimming is off the charts, the perservations and the scripting are enough to make a saint lose their patience and I am holding it together with a cup of coffee, a prayer and the strength to know this too shall pass, yeah Autism can fuck off.

Again I will state, that I love my children with every shred of my being.  I will go to the ends of this god forsaken planet in order for them to have a fulfilling life on their terms. It ain't going to be easy  and the path is going to suck, but that is my job as a parent.

Tuesday, August 12, 2014

Robin Williams: Why his passing means so much..

It isn't a well kept secret that  Hollywood with all of it's glamour, lights and sparkle has it's dark corners. It's stories of scandal, drugs and infamous torrid tales of jealousy and murder. But there are few good gems that have come out of the celebrity mish-mash.  The ones despite their own demons, still try effortlessly, to use their fame for good. One such wonder was Robin Williams.

As many of us are still in shock from last night's announcement, I, myself, am floored. He wasn't just a man of many comedic talents. Yes he was a funny, funny man and earned the right to be called the King of Improv.  His talent wasn't just thinking on the fly. He had brought so many great performances to our screens. From John Keating from Dead Poets Society to Hector from Being Human. But it was Perry from The Fisher King that resonated with me. He portrayed a man bound by mental illness, but who managed to help another from the depths of suicide and depression. A relationship that both helped, Parry and Jack. In a way, his experiences in life and being so open about them have helped so many with their demons. In my mind it was one of Mr. Williams best roles. Which says a lot as there are so many.

The passing of Robin Williams is a tragic loss. Not just to Hollywood, but to the many people he helped. From St. Jude's Hospital to doing USO tours. He was one of the biggest champions for mental health. He battled his demons on a very public stage. He didn't shy way from admitting that, he too, was depressed or that he had used drugs to self medicate. If anything he wanted people to learn from him. If not from his public battles but from the roles he took in life.

Like so many tragic deaths that happen in the Celebrity world, its the ones that touch our lives in the most honest ways, that have the biggest impact. Robin Williams' death hit like a wave. A wave of sudden sadness. For those of us who suffer from depression, anxiety or any number of mental illness, we know the pain Mr. Williams had felt. We know that point of no return. If anything should come from this man's passing, it should be more education when it comes to Mental Health. It should be that people aren't always what they seem. The funniest man in the world was also the saddest.

Mr. Williams, I hope that the pain you felt inside your heart has lifted. I hope that you are now able to soar. I hope that when you look down upon us, you will see the light you have given us. Through your generosity, your smile and your immense talent to bring love and laughter to the world that solely needs it, we are grateful for the gifts you have given us.

"It begins with the king as a boy, having to spend the night alone in the forest to prove his courage so he can become king. Now while he is spending the night alone he's visited by a sacred vision. Out of the fire appears the holy grail, symbol of God's divine grace. And a voice said to the boy, "You shall be keeper of the grail so that it may heal the hearts of men." But the boy was blinded by greater visions of a life filled with power and glory and beauty. And in this state of radical amazement he felt for a brief moment not like a boy, but invincible, like God, so he reached into the fire to take the grail, and the grail vanished, leaving him with his hand in the fire to be terribly wounded. Now as this boy grew older, his wound grew deeper. Until one day, life for him lost its reason. He had no faith in any man, not even himself. He couldn't love or feel loved. He was sick with experience. He began to die. One day a fool wandered into the castle and found the king alone. And being a fool, he was simple minded, he didn't see a king. He only saw a man alone and in pain. And he asked the king, "What ails you friend?" The king replied, "I'm thirsty. I need some water to cool my throat". So the fool took a cup from beside his bed, filled it with water and handed it to the king. As the king began to drink, he realized his wound was healed. He looked in his hands and there was the holy grail, that which he sought all of his life. And he turned to the fool and said with amazement, "How can you find that which my brightest and bravest could not?" And the fool replied, "I don't know. I only knew that you were thirsty."- Parry, The Fisher King (1991)

Thursday, August 7, 2014

The very tip of the Iceberg. Just barely scraping the surface

We all know the anatomy of an Iceberg thanks in part to the Titanic. Where you have this beautiful, floating body, just slightly skimming across the surface of icy, cold waters. What you really miss, is the body of the iceberg that is below the surface. It is this massive portion to that majestic ice castle above. No one ever sees the fully epic grand scale of an Iceberg. They just see what is on the surface.

Humans are much like those floating majestic ice palaces. We seem to have this way about us, where we present ourselves with a facade, much like an iceberg. Not saying we all have an icy way about us, but beneath our forced smiles or seemingly healthy nature, we have our own epic mass that is hidden. Who we are and what makes us, well us, is much like that convoluted, hidden portion of iceberg. The complexity of it can be the same. Uncharted, unexplored but yet it can be a dangerous place.

When we look at each other, we only see the surface of that person. That marginal tip that is exposed for the world to see. Its when you start to take a closer look at someone, that's when you start to realize the complexity of that person. You get know who that person is, besides what is just on the surface. You begin to understand what makes them, them. There are so many times where people are misjudged, as other have only seen what is on the surface. These assumptions are very dangerous and harmful, just like the sharp edge of an icy shelf.

When you see someone, don't always assume that they have their life put together. Don't assume that just because they are able to walk down the street, that things are happy or that they aren't in pain. Everyone, and I mean everyone has their own icy shelf beneath the surface. Doesn't matter if it is visible or not.

Like the Titanic, people assume that their judgments are valid and sound, when in fact its always the opposite. You may not realize until its too late, that you have just barely scraped the surface to someone's nature. Think about your words. Maybe that harsh criticism to the parent in the store about their child misbehaving, is you not knowing that child has Autism.Or maybe insensitive remarks about how you wish your partner would just go away are said to a military spouse who's significant other is deployed. Or maybe that look you give someone who has a disfigurement, you don't know is a War Veteran. Sometimes you can just look at someone and not know they have an invisible illness, that prevents them from doing certain things or that cause them great pain with inside their bodies.

When you are out in the world, take a good look at people. Open your mind to the possibility that the people around you, only give you a portion of who they are.

Much like an Iceberg, most of us are only scraping the surface.

Monday, August 4, 2014

Of Course it needs to be fixed, He is deployed. A Military Wife's tool box.

I am not the type of person that can sit back and twiddle my thumbs when there is a job to be done. I guess that is one of the reasons why I suit the military spouse lifestyle so much. It seems to me that every single time he goes out, the house, car and every appliance with their 7 year warranty that has just expired has all of a sudden either stops working, breaks or falls apart.  It never fails. Now I am pretty handy when it comes to the toolbox. I know the difference between flat head screwdrivers and a phillip head screwdriver. I was fortunate enough to have a father that taught me that painting and fixing things isn't just a skill set for boys.

From the time I could remember, my father was always including me with home repair projects. Whether it was teaching me at an early age to hammer a nail in correctly or to never overload your paint brush when you are painting. Even to this day, he still teaches me how to do things. And because of that my "Woe is Me" mentality goes down a notch. I don't have to worry if the toilet explodes or if there is a hole in the wall, thanks to a certain over zealous four year old.

I fear that girls and young women aren't learning how to get things done or even know their way around a hardware store. For us military wives, (sorry military husbands, but most of you know terms like PVC, particle board, and what a caulking gun does and could do home repairs because you are most likely taught..), unless we had some one teach us, we are kinda left out in the dark, literally, when something happens to the house and our spouse has been deployed. We can either hire someone(which is expensive) to come fix it or throw ourselves at the mercy of neighbours to come help you figure something out. So what are we supposed to do? Educate ourselves!

If it is one thing I have learned in the 12 years of marriage, where most of it was spent not having a spouse around, is to learn how to do simple things. Like using a drill correctly. Or knowing what kind of paint goes on the outside of the house as oppose to the inside of the house. Besides picking my father's brain every single time something falls off the ceiling, I have discovered YouTube has a vast amount of DIY videos. Stemming from how to replace your toilet wax ring to how to find your GFI sockets in your house( those are important to know, in case half your house doesn't have power!). Type in whatever project you doing, and yeah there will be a video with step by step instructions on how to do it. Another good resource is the Men and Women who work in our hardware stores. These people are awesome. I can't tell you how many times I have walked in and asked, "Hey, I am currently trying to fix X, Y and Z, where can I find the materials I need." and 9 times out of 10 they will be happy to help you as they would like to see you back for your next project.

So gone are those days when we used to live in the house falling apart around us as we wait till the spouse comes home or paying out too much money for an overpriced contractor. We, the Wives need to show that we can get stuff done when the men are away. They don't need to worry that they will be coming home to rubble. So take charge, you can get your hands a little dirty( I just ruined a perfectly good manicure putting up a bay window :) ), and being able to say... " I got this!"

I thought I might include what every Military Wife should have in their tool box:

Hammer, one big and one small
Screwdrivers with interchangeable bits
Box cutter and a craft knife
a small scraper
Long nosed Pliers
An adjustable wrench
An Allen wrench
a yard ruler and tape measure
Nail and Screw Packs
A level
Duct tape
Electrical tape
A staple gun
A tub of Polyfill (the type that turn colour when it dries.)

This isn't just for us military wives..but for anyone that would benefit from it.  Everyone should have some sort of basic tool box. Of course there will be projects that will require help and if you think the project is too big for you to do by yourself, Please ask for help or contact someone who can. The last thing I would want to happen is someone trying to re do their roof and say.. " Well that crazy lady who writes over at Spouse, Kids and Special Needs..said I could do it!!!" Always, always use common sense and safety is always first!!