Sunday, March 29, 2015

The Joke's on You...

Laughter is one the best things that can lift up the human spirit when it needs to be picked up. Sharing a joke among friends can sometimes break the ice. The joke ceases to be funny when the intent or the punchline is hurtful to others.

Making jokes at the expense of others is nothing new. It has been going on throughout the ages. From the time of the old bard, Shakespeare making jokes about the Moors in his plays and sonnets to the "Short Bus Jokes" of today, racial jokes and discriminating jokes have always been around. The sad part is, there is no shame when making them. What is even more sad, is there is no remorse about it, either.

Now I am not going to get on my high and mighty stead and start preaching about how I never laughed at a joke about a race, religion or a certain group of people, as that would hypocritical of me to do so, but I will note, that since my children, I have become more aware of the impact that jokes about other people have not only on my own children, but the message types of jokes can carry. In a way it paves the way for budding discrimination and bullying. Which to me isn't right. In our youth, we didn't think about the impact, that laughing at short bus jokes would do. Its when you become an adult, you start to see the social impact certain jokes have on the people they are about.

It seems that in past decade or so, that jokes made concerning disabilities has been made more mainstream, and while I have been told that " Hey, its just like every other joke made about others, what's the big deal?", I tend to reply, "Would you like this joke to be about you or a loved one, specifically?" 9 times out of 10 the person will reply no. And sometimes I get the occasional person who doesn't care. But I have often found that when the tables are turned, the laughter tends to stop short. A lot of people miss the bigger picture when trying to get a laugh. But it seems that some have missed this mark.

Comedians like DH Hurley and now Steve Harvey, who knowingly poked fun at the Intellectually Disabled, have come under fire from the Autism Community. Right fully so. It would be a different story if a Caucasian comic poked fun of the African American Community or vice versa. There would be mentions of racism thrown out and apologies given. So why isn't there the same when it comes to offending the Special  Needs Community? Now I get that Steve Harvey issued his own half assed apology to the Autism Community over his gaffe on his morning show, but that still doesn't stop the continual onslaught of jokes poking fun of people with Autism or other developmental disorders.  And before anyone wants to question, whether or not I have a sense of humor, I do. There are lots of things that I find funny in this world that don't involve making someone or a group of people feel bad about themselves. Because what people don't understand, is that people like Hurley or Harvey have a fan base. They have people that hang on to every word and joke that comes out of their mouths. So really what kind of example does that set? That its ok to make fun of a group of people, but when someone does it to them, that isn't ok? Its a nice double standard isn't it? These two are only two out of the many who have used Special Needs as a punchline to a joke.

With Autism Acceptance Month, around the corner, this just proves to all of us advocates, that there is more need for education. Education on diversity. Education on how to deal with the diversity of others.

In all seriousness, when it comes down to it, when opening your mouth to say anything, think to yourself, is this going to be something that is going to hurt someone? Is it something that is going to make me feel better and them feel smaller? And if it is, then don't say it. And if you feel the need to make a joke at someone's expense, it only makes you look like an asshole and then the joke is on you.

Sunday, March 22, 2015

Accepting Individual Uniqueness: Yours, Mine, and Ours.

Over the weekend, my husband and I got to witness two very dear friends get married. It was a small, quiet event. The picturesque place that the wedding was held at had, happily accommodated 50 or so people from mixed back grounds. It was a lovely mixture of both military and civilian friends and family, joining together to wish this happy couple the best of wishes as they set forth together in a brand new life. Now I know what most of you are thinking, it's a wedding, there are lots of people that get married, everyday. You see, it was two sailors that got married on Friday. Not that two sailors don't get married everyday either, but there were two grooms, which made this wedding even more special.

As I sat there among friends that I haven't seen since we were stationed in Hawaii, watching this room full of people, who wouldn't have attended if they didn't support this couple, mix and mingle. The conversations flowing from how special these two people are, and a wedding done right. I am reminded that when it really comes down to it, it is the respect and love all of us have for these two people, who are simply just being themselves.  Love is just love. Very simple.

It made me question, Why is it so hard for people to just accept others for who they are?

I am a mother of three very special children. Who, in their own right, need to fight for their right to be accepted. And in time they will become adults. It would be nice if when that happens there is a world out there, that is going to accept them for simply being who they are.  Even as children, they are still faced with people's ignorance. They may not recognize or realize it, as ignorance is a learned behavior, but as they grow they will learn the cruelties of the world. That not every person is a good person. That there are some that have been taught to dislike and even hate those who are different from themselves. It's one of the reasons that I try to instill in my own children, that they need to accept people for who they are. But they don't have to accept hateful behaviors. In my mind, if I want acceptance for my children, who are very unique and offer the world a different perspective, then why wouldn't I accept others for the person they are. That doesn't mean that I will accept hateful and disrespectful behavior. But I do understand that a person hasn't been taught or hasn't learned that there is more to life than discriminating against another person for differences.

I tend to think that my children have made me a more accepting person. Seeing the uniqueness that everyone has to offer this world. The different perspectives that can been seen, if I took the time to get to know a person. Because when you think about it, if you are trying to fight for acceptance for your children and their right to be part of society, but yet you can't accept someone else's, due to their lifestyle, colour of skin or even religion, then why should people hear your fight for your child? It is very easy to say one thing, but yet do another.

As I think fondly back to Friday night's events, I think back to the two people who now have the right to be recognized as just two people who love each other and I hope in time, that the world will be able to see everyone in that same light, just as a room full of people did for this couple. It gave me a little bit of hope that when my children are adults, that society will accept them for who they are.

I will end by saying this, that it doesn't matter where you come from, what you do, or even what gives you the special gifts you can offer the world. For me, you will always get the respect from me for just being simply you. I am not asking for people to change their ways. I get that there are some things in life that people are going to disagree with. But if you are going to take up arms over people not accepting your loved ones for who they are, then you need to be prepared to extend that same courtesy to those who are different from yourself.

Saturday, March 14, 2015

The Change of Command: The Spouse turn over.

Two years ago, my husband and I made the decision for him to do a two year tour away from the family. Instead of uproot the kids and I, we stayed put, right where we are. The schooling was perfect, the medical support was where it needed to be. It has been a long two years. Life has thrown a lot at both of us collectively, to test our limits. But we both trucked through it all and manged to come out ok. So despite the very long two years, he finally came home this week. And like anyone who is returning from being away from their family for a long period of time, adjustment back into our lives, is slow and steady one.

Like many other military families, we too, are faced with the issues that arise from them not being in our lives much for a good amount of time. And for us, it seems that every time my husband deploys, the children have their own medical crisis. To which I am faced to deal with alone. Its one thing to deal with a diagnosis together, but its another thing to face it by yourself and then have the task of relating everything  said at the doctor's office to your spouse on either a crappy internet connection or a phone line. And believe me it's no picnic trying to tell your spouse something important concerning their children over a crappy line. But with all that, you still have to manage your life and your children's life and everything that comes with it. Assessments, Doctor Appointments and school meetings. I can honestly say that I have done all of those for each child, by myself. Now I am not saying that my spouse didn't want to be there for any of those, but the circumstance of our lives made it impossible for him to be part of that world. And it is a world that consumes a good portion of your life. But the question is, what happens when they come back?

You get so used to your routine. Your children are used to the routine. And now you have to get your spouse used to the routine. And for a person who hasn't been there for a long period of time, looking at the calender, can be confusing. In a way, you wish you could just do a power point presentation for them to try to bring them up to speed. So when you have children, who have multiple things going on and their own set of Doctors you have to remember, it almost looks like the world's worst calculus problem. And on top of everything else you have on your schedule, you now have to include integrating your spouse back into your lives. It's not an easy task. As they are going to have their own questions and quandaries. And yes there is going to be times, where they will challenge the, WHY, WHAT, WHO, WHERE and the WHEN of things. They may not like a certain doctor, or the way they have managed their child's care. Even though, you have been seeing this doctor for awhile now and see nothing wrong with the level of care or the way the IEP is set up. The one thing that has to be remembered, is that is ok for input or suggestions, but the returning spouse has to remember that this is the life that has been lived. It is the lifestyle that works well with you and your children. It is going to take some time, but eventually they will fall in line. And if they don't then, it is more about them accepting the situation as it is, not you trying to make them accept it.

I made sure that I had conversations with my husband before he came home. I laid it out for him. I didn't sugar coat things. This is how we do things, these are the behaviors and quarks that you will need to get accustomed to and these are all the doctors and therapists we see during a month. Yes it is going to take time for you to get used to it all, but Welcome home, this is your life. One thing I asked of him, is to not tell me how to do the job I have been doing in his absence. As I have sailed this ship, The USS Special Needs for awhile now. I am the CO of this particular ship and he can take the job of XO.

I think the hardest thing about having your spouse come home, especially after there has been a diagnosis given in their absence, is acceptance. While you have had the time to digest the information given to you, it is a whole new world for them. When they left, it was a different life. So not only do they have to deal with coming back to a lifestyle they have missed out on, they also have to deal with the reality of that lifestyle, which includes the special needs aspect. While I was trying my best to inform my spouse all that was going on with his children, I know he felt that being far away from us, made him useless. He had his own range of emotions to sort out when it came to dealing with our son's recent diagnosis. And of us spouses, that live and breathe our child's medical problems, we have to remember that. Our spouses have to go through the same kind of emotions. Anger, Sadness and grieving what once was. They will do it in their own way, but they need to be allowed to have those emotions.

Right now, I am just so happy that he is home. Not for my sake, but for his. Just as I have had time to process everything, and still continue to do so, he is taking the time to understand his own children. Its not going to be an overnight deal. Its going to take time. Even the families who don't have special needs in their lives, need time to integrate back into family life. But he is taking his time. Taking time to observe and learn. And I think that helps him understand why we do things the way we do. I know it isn't easy for him. As it is like walking away from one way of life and into another. And I need to respect that and accept it. No, its not always going to be like that and its going to take a couple of months, but at least there is effort on both parts to make this work.

At the end of the day, they are back home. Whether or not it is for a little bit or for good. And if your spouse wants to have a meaningful relationship with their children, they will help you with the task you both have to ensure these children's future. Again there will be questions along the way, but you have to remember that this is like throwing a polar bear into the desert and expecting it to understand it's environment.  It isn't going to end well.

In the end, I wish that integration was as smooth as ice, but in reality its not. There are going to be bumps along the way. And when the time comes and the honeymoon period has run it's course, both of you need to prepare yourselves for the reality that is yours and yours alone. Support each other. Listen to each other. Don't discredit feelings. Let them learn and ask questions. If you want a partner to be there for you during the rough times, you need to be there them as well. But also forgive when mistakes are made and remember that they are also trying to understand and process everything that has been put in front of them.

And in the military brain, it is almost like a change of command. Not taking your responsibilities away so much, but being there when you need the strength and support to propel the ship forward. The watch standard just changed, that is all.

Sunday, March 1, 2015

Enough with the Bullshit.

There comes a time in someone's life where despite the all the things they do and the hard work they put into something or someone, the universe is still going to throw a wrench in it. I sit here to write something in the hopes of it being meaningful or encouraging  to someone, but I just can't. I am just so tried of the amount of bullshit.

I am not going to sugar coat this post. Make it feel all sunshines and rainbows. The truth of the matter is, is that I am pretty angry at the world right now. It seems that no matter how hard I try, I am just tried of getting shitty news one memo at a time.I am not asking for someone to throw me a silver spoon or a magic wand. But just a small fucking break from the continual shit sandwich that keeps getting served to myself and my own. Seriously, LIFE, give it a break.

The other day as I am sitting in yet another countless doctor's office, receiving yet another test result for my youngest, where they are stating that my son is "Intellectually Impaired", another fancy phrase for the now dated, "Mentally Retarded" Just one more thing, that with along with Autism, Fragile X and seizures my son can add to his multiple diagnoses. Its like the world's shittiest brag sheet. I know this isn't the end of the world to some. And that there some things that are worse that this. But for me, I feel like it is a blow to the gut. As there is not one parent on this planet that wants their child to have a difficult life or a life they have to fight harder then the average person for. No parent wants that. I love my children very much and I would go to the ends of this great planet for each and every one of them, but god damnit, do I hate what afflicts them. I hate that genetics and environmental factors have put this on our children. I fucking hate it. I know in my heart that there was no way I could have stopped what was going to happen. Life is going to be what you make it. I will damn well make sure that all of my children get the most out of the life that has been given them.

I am left to deal with this anger. An anger that will make me want to work harder for my children. That anger will make me want to make this world a better place for them to live in, that includes their differences. But enough of the bullshit.

There is so much bullshit that surrounds those dealing with someone with special needs. And maybe its because I am angry about things, that makes me see the clear cut way through the amount of bullshit. I don't know. But it seems like not matter where you turn, there is a fog of bullshit. Insurance bullshit. School bullshit. Social bullshit. But there is never a person standing by to hand you a shovel to help you shovel through the bullshit. And I can tell you that I am tried of shoveling bullshit. It isn't as nearly as fun as shoveling snow. At least you can have fun with that.

I know things will get better. I know. They always do. But right now, I am allowed to be angry. I am allowed to have my "KHAN!?" moment. I am entitled to feel this way. And before I get the "God only gives you what you can handle." or " It is God's will or plan", I will caution people, that no, it's not any deity's plan or will. I have respected other's religious beliefs in a way, that if it doesn't impact me, then I don't care what you do. But when it comes to myself and my own, I don't feel that any deity has a place at my table, who thinks it's ok in their master plan to give children a difficult life. Religion has it's time and place. I am always accepting of positive energy or vibes, if that is prayer, then cool. If it is dancing in the moonlight naked,during a full moon, thanks. But out of everything that is said to me on a daily basis in regards to my situation, telling me that my son's intellectual impairment is the master plan of a some deity, will earn you, me walking away from you.

I get that this might lose me some followers, and to be perfectly honest, I don't care. If you follow me and know what I am about, you will understand my anger at the universe and the path that I have been on. If not, that is cool. This is just how I am feeling right now. If you feel the same way, then fantastic. Makes me feel like I am not rowing in this boat alone.I don't expect everyone to agree with me. Again, as I have always stated, I am not everyone's cup of tea. To each their own. I guess, if there is anyone out there who is a similar situations, to know that you are not alone and the feeling you have over a diagnosis are valid ones. You are allowed to be angry, upset. You are allowed to scream and yell and cry. Its all part of being a parent. Dealing with what will come. Someone once told me when our daughter got diagnosed...

" Life ain't easy, cupcake. Its all about how you live it. There are going to be times where its going to suck some shit. And you are allowed to get angry about it. But do something with that energy."

So here I am, doing something with that energy. One of the reasons I blog. To try and make this world a better place for all those children out there who see things differently.