Sunday, October 2, 2016

Walking around in a World that doesn't understand you.

I am watching my son play. He is in his own little world. He is spinning, laughing at something he found funny, talking to who ever is listening, most likely its his buds, Charlie Brown, Snoopy, Elmo and Thomas. He is happy. In his mind, life couldn't be better than this. Outside of his reality, however, it is a different story. Its cruel and harsh. Demanding and judgemental. Its a world that he only visits periods at a time,then goes back to his world of laughter, hugs and the characters who understand him the most. What he doesn't know is he is walking in a world that doesn't understand him.

Just as he is experiencing the world around him, the world experiences him. Some will be compassionate and some will not. Some will not understand and some will. To him, all those who have had the pleasure of meeting him, whether or not on a personal level, are just faces. Some he will know and they will get the gift of his smile, but most are just as random as the events of his day. Except for the people who know him, most people will not understand that. Rather than being compassionate, he will face ignorance his whole life.

Many people have this misconception that neurological disorders end when a child who has been diagnosed with one becomes an adult. My son will always have Fragile X. He will always have Autism. He will always have Sensory Processing Disorder. None of that will ever go away. As a parent, I can help him adapt. I can help him understand himself better, so he can function as best he can in the world that doesn't understand him.

Through services like ABA, Occupational Therapy, Speech and special education, he can learn more about himself and ways he can experience the world on his level and comfort, so it is enjoyable to him, not anyone else. People seem to think that the services that are provided for our children are designed to make them more socially accepted. No my friends, it is not. Those services are not for society's benefit. They are for the benefit of the person who needs them. It is for the person who needs to feel comfortable with the outside world. Not for you to cast your judgemental eyes towards them as they navigate through public. Nor are the services there to better equip them as they listen to the whispers said about them when they have no control over what is happening to their bodies.

Sadly, there isn't a day that doesn't go by where we don't get the ignorance. Whether it be while we are standing on the sidewalk waiting for the school bus to come or in the grocery store. Thanks to his innocence, he doesn't notice a lot of what is going on, in time that might change. Or it might not. I, as his parent, am fully aware of the possibility that I might have a child who will be a young man, who cognitively will be a little boy.

He will always be my little boy however old he is. As he grows, I will always be that little boy's champion. I will watch him walk in around in a world that doesn't understand him. As he walks, I will be right behind him, advocating his right  to walk around. Whether or not, the world understands him or not, he has a right to walk along side his brother and sister and with the rest of humanity.

Right now? He is content within his own mind to walk with people who respect him. Today, they are Elmo, Thomas, Charlie and Snoopy. Today he is walking around in a world that has love, laughter, dancing, hugs and smiles. I am ok with that. I will continue to make sure his path in the world that doesn't understand is full of laughter, dancing, hugs, smiles and most importantly, Love. One small step at a time.

Saturday, September 17, 2016

I'll have a slice of Compassion with a side of Understanding.

Ignorance is every where, I have learned. I could write an open letter daily to everyone we encounter on a daily basis who gives us a dirty look or snide remark, but I don't have enough time in a day or the energy to do it. So let this be my open letter to all the ignorant people we have to deal with on a daily basis. You all suck. Nothing as simple as just that. You all suck. You suck at being a compassionate person. You suck at seeing past someone's disability. You suck at accepting that someone just might be different from you. You just flat out suck. You especially suck when you make a parent feel like the absolute crap with your ignorant behavior.

Now I get that maybe being sat in a family restaurant next to a family with a special needs child might not be ideal for you. Hell, I get it. We can be loud with our verbal stimming and we also might be distracting with our movements, but that doesn't give you the right to be an asshole. As it has been proven, giving special needs parents or care givers dirty looks or staring at the obvious is not going to help the situation, nor is it going to even cure the person either. Not in the history of anything has being rude and ignorant been a cure for anything that afflicts a person. EVER.

I know that I can't help the opinions of others. People are going think what they want. Pass judgement as they please. As much as I try to brush the ignorance off, it still pains me as I see how society reacts to my children. It down right angers me every single time. It angers me every time someone gives me parenting advice when they don't know my situation. It angers me every single time I get " You need to keep your son at home as he is disruptive". It angers me that people are still out there doing this stuff, when there is so much information to educate oneself, but yet I am the lazy parent who can't control my children in public and they can't even read up on what Autism is. I don't expect miracles, but I do expect compassion. Compassion, like common sense, isn't a flower that grows in everyone's garden, I get that. I am allowed to be angry and annoyed.

We went to a local pizza joint this evening to boost the spirits of our children, after a rough couple of months. While the staff of this establishment were great, the guests however were not. You see, our youngest can be a bit loud when he is verbally stimming. He loves pizza and this place is one of our favorites. And of course this place has ceiling fans, which he also loves. So there is a lot of stuff going on, that would make him stim. I knew as soon as we sat down that the two older women across from us would take issue with Little Man as I sat down one of them already had a scowl on her face. I thought to myself " Ok here we go. Just brush it off" Every single time he got excited about the ceiling fans her head would whip around and just rudely stare at him, I stared right back at this woman. It got to the point where they requested to be moved as my son was too loud for them. This is a crowded pizza place on a Saturday night. As they walked by she made the point to stop and just look at my son in disgust. I told her " Sorry his autism ruined your evening, I'll get that fixed", watching her stomp off to a different part of the restaurant. And of course was we are leaving, he gets super excited about the ceiling fans in the main dinning room and again gets loud, watching pretty much the whole room, including those two women, turn and just stare at my family, made my heart sink. Sometimes its very hard to brush things off, especially when you have a room full of people silently judging your child. Some of the looks were that of sympathy. Some were curiosity and some where just rude. 

I am not ashamed of my children. They can't help being who they are. I am ashamed of people who know better. Grown ups. People who can sit down and educate themselves. People who know what the word acceptance means. I refuse to keep my children out of society because other people don't know how to react to them. That is not my problem. My problem is when your reaction affects myself and my children. And I have every right to put you in your place.

To those two older women and everyone else who feels the need to make myself and my children bad about themselves, I hope you never have to experience adversity. I hope that no one treats you differently because they don't like some aspect of yourself. An aspect that you can't help having. If you have the unfortunate experience of being treated differently, then I hope you learn from it. I hope that you will grow as person, if you don't then you are going to have a garden full of weeds and not a garden full of different, beautiful flora that awaken your soul.

Friday, August 26, 2016

You don't owe anyone an explaination.

It is a lesson my mother is still trying to teach me. I don't owe anyone an explanation for anything. Its a hard lesson, which is why I am still learning it. As a parent with special needs children your automatic response to things is always explanatory. You so desperately want people to understand the reasoning to why you are doing something a certain way or why your child is doing something they can't control. You go into teaching mode, whether or not they care or not. In the end, you don't owe anyone anything.

One of the reasons most of us do it, is because we want the other party to have some sort of understanding to our situation so we don't have to deal with the ignorant looks or murmurs. Sometimes we reach people and sometimes we don't. If you don't want us to drone on and on about why our child is 7 and still in pull ups, stop judging. Or if you don't want a lecture about why our child is super excited about the train that goes around the cheese section at Wegman's, don't give us a disgusted look as you walk by. Believe me, we get sick of sounding like a broken record player every time Judgey McJudgerson gives us their two cents. Special needs parents don't owe you anything.

The real trick to this lesson is when you are struggling. Whether it be a something big in your life or something small. It is your struggle and yours alone. It is your story to tell if you choose to. If you don't, well again you don't owe anyone an explanation as to why you are not yourself. This personally has been one of the toughest lessons I have struggled with. For me, I do want people to understand that the reason I might be snippy or a little down is because of something that is going on in my life. It isn't a personal attack, but that I am struggling with something, that I need time to sort out. I am fortunate enough to have family and friends that respects that. They check in on me to make sure I am staying afloat, knowing that in my own time I will have a conversation if I want to about things. They know I don't owe them anything.

Manage your life the best way you know. Nobody knows yourself better than you. Take your meds freely. See your doctors and therapists when you need to. Your health is your business and you don't owe anyone an explanation as to why. 

Be your badass self. Do what makes you happy as long as it doesn't harm anyone else. Rock the multi coloured hair, tattoos, piercings. Practice the religion you identify with. Love the person who respects you and knows your worth. You don't owe anyone an explanation for you being yourself. Love the things that make you smile. Sports, comic books, movies, books, video games, whatever. If it makes you smile and gives you joy. You don't owe anyone anything.

Even now as I am one one of my explanatory rants, I do feel the need to explain why I haven't written or tended to my page as I should. I know that most of you will understand that life happens. Things in people's lives happen without rhyme or reason and we all have to push forward from our struggles to make it all work out. In our own time. The outside world be damned.

Your story is your own. Its yours to share if you want to. Let people speculate. Let people do their best with the judgement. You do what works for you. You do what works for your family, through the good times and bad. Yes there are times where even I, feel that I need to explain myself in order for the other person to get a glimpse into what my world is like. Do I think they care? Nope. But I got it out there. I took care of my overwhelming need to make people understand, that their comments and actions are unwarranted and quite frankly none of their business. Judgey McJudgerson can fuck off, as I don't owe them anything.

Tuesday, July 26, 2016

Picking up the Pieces: Dealing with the aftermath of Trauma with Special Needs Children

As a parent you go through your journey trying to raise your kids the best way you know how. You read the parenting books, you listen to the experts and you take away the lessons you have learned from others. You convince yourself that you have prepared your children for the real world. With all the horrors that lie outside your front door, you pray that every time they walk out, that nothing bad is going to happen to them. We as parents have nightmares about trauma ever happening to our children. The old statement that when you become a parent, kiss a goodnight’s sleep goodbye, there is some truth to that. Even when you do your best, bad stuff still happens and it is what breaks your heart as a parent when trying to pick up the pieces, wondering what went wrong.  It is more heartbreaking when you are the parent of a special needs child, who doesn't understand why bad stuff happens.

As a parent, you struggle with your own emotions during a difficult time. You ask yourself, how could bad stuff happen to my child. I did everything I could to ensure that child's safety. You start to re-evaluate yourself and the way you parent. Deep down after you try to take all the hurt away you are left with ‘Where do we go next?’ ‘How could I have let bad stuff happen to my child?’ and ‘What steps do I have to do in order for my child to heal?’

You go through these stages of guilt and paranoia. You don't want to let them out of your sight and you feel bad that you had no control over what happened to them. Oh… and you’re angry. So very angry. Angry at yourself, at the situation, and the all the hurt that the bad stuff caused. Being a parent is going to be one of the toughest gigs you will ever have. Yes, you have your joys, but damn the heartache. That’s the kicker right there. Especially when that heartache was caused by something that was beyond your control.  When bad stuff happens to our kids, we become this bear like protector, full of rage and anger, ready to strike at anyone who dares to cross our paths and mess with our children. Sadly, most of us who are caretakers of those with special needs know all too well what it means to go into bear mode.

Our children, regardless of their diagnosis or the severity of it, for the most part are resilient. The ability to bounce back from bad stuff is remarkable. While they process things differently than us adults, there is still that element of hurt and not understanding why things happen the way they do. So when you have a child who experiences something like emotions differently than the average person, it is hard for that understanding of something to be acknowledged or processed. When bad stuff happens, it is going to involved a different type of healing, a different approach for them to come to terms with what has happened. Emotions and memories that may be blocked can come out with certain behaviors. These behaviors aren't always understood by either the child themselves, the people around them, or both. Sometimes for us caregivers it is hard to have a conversation about something that is uncomfortable with a person that doesn't understand what happened in the first place. They don't understand why the hurt is there, because they don't quite get the emotion behind those feelings. 

In the past couple of week things on a personal scale, as well as an outside world scale, have prompted this post. In the news as of late where a severely autistic man’s therapist was shot right in front of him begs the question of “How do our children or loved ones with special needs cope with having trauma in their lives?” As we will always wonder how our loved ones’ process things anyway when trauma or bad stuff happens. We worry about the lasting effects of it on our loved ones, as they have little to no understanding of what has taken place. Fear might be the only recognizable response. Something in that traumatic event might trigger a behavior that is misunderstood. Sometimes a person doesn’t know how to handle it properly, even special needs persons handles trauma differently. Even the word “Trauma” is scary to anyone and a word that no one likes to hear. Especially a parent or caregiver.

Hearing the words “Trauma” in regards to your own children is one of the worst things a parent can hear. Doesn’t matter what kind of trauma is being talked about; emotional or physical , the word alone will make you sick to your stomach. It is a nightmare that no parent wants to live. You try to be a good parent and do everything you think is right and think that nothing bad will happen to you… until it does.

Many of you know that I write from personal experience. I write in hopes that my stories will help others who might be in the same boat as I am. For this particular subject I never thought in a million years that I would have to deal with any sort of trauma in regards to my children on a personal level. I can’t get into too much detail, but the last couple of weeks have been especially hard to muddle through. I thought that parenting special needs children normally was hard, but there is nothing harder than trying to get your children through trauma they have experienced themselves. We are used to a lot of things in this family; bullying, name calling, and a whole lot of ignorance. We have weathered every storm that has hit us, bunkered down and carried on. This storm though… this storm to date is our worst. This was our Katrina or Sandy. We are still at the ‘trying to rebuild’ stage of our lives. In time I will be able to expand, but for now it is what it is. The calm after this storm is the support through it all. We are all about being healthy inside and out. Maintaining communication and having open dialog when it’s needed. I want to believe that this storm will not have lasting effects on my children, but only time will tell.

If something has happened to yourself or your loved one Seek Help. Even if you don’t think your loved one will understand, there are psychologists that are trained to help those with cognitive disabilities with trauma. Any kind of trauma. As it is the special needs kiddos are the ones who are taken advantage of more often than not for the simple fact they just don’t understand, but they have these feelings they need help navigating through. Just because they might have a different reaction to trauma than the rest of us doesn’t mean they haven’t experienced it.

We take one day at time. Some days are good and some aren’t. I know in the end, we have the strength to keep moving forward, even if it is just putting one foot in front of the other, one step at a time.

Thursday, June 9, 2016

Boatswain… Stand By To Pipe The Side... A Navy Wife going Ashore.

Like many Military spouses, we met our significant others midway through their careers. I didn’t meet my husband when he first got in, but I met him, I think at the right time in both our lives. For us, our 14th year of marriage is coming upon us here in a couple of weeks, but that is not the occasion that will be momentous for us this year. Don’t get me wrong, it’s fantastic that we have made it this far, but it’s the transition of going from military to retired military that will be the biggest journey we will embark on. After 24 years of loyal service to his country and his Navy, my husband retired. Suffice to say, it has been a stellar 24 years for him and a career that he can be proud of. For me it is 14 years of loving and supporting this man through the deployments, rocky commands and all the stuff the military tends to throw at you.

It is somewhat bittersweet for me. As much as I have cursed the Navy for taking him away at times that I sorely needed him, I am going to miss it. There were duty stations where I felt the sense of community and even when there wasn’t one, I had always managed to connect with someone who was military. Over the years, I have been proud to call myself a Military spouse. Not only did I marry my husband, but I married his occupation as well. I have been places that I would have never thought about being. Saw things that I only thought existed on a post card. Now as my husband says goodbye to an aspect of his life, I too, say goodbye to that as well. I say goodbye to a lifestyle that has held me for 14 years. The moving every three years, the re-establishing yourself at every new duty station. The panic of watching all of your worldly possessions being packed up into a crate, but most importantly saying goodbye to a community that has supported us and him for 24 years.
I look back at it all and remember fondly of the people and places I have met and been. The friends made over the years. The people who helped me get through some of the darkest times in my life and the ones that taught me a lessons on how to be a good spouse, the good, the bad and the ugly. It’s the growth of my person that truly amazes me. When I first got married, I was a scared person. I didn’t know what I was getting myself into. Not one bit. I was in love with a man. Just a man. The military aspect of this man came later and when it came, it came at the velocity of a hurricane. My first deployment, which seems like forever, was only two weeks. To say that I was a mess is an understatement. I didn’t know what to do with myself. I think I might of cried myself to sleep every single night he was gone. Sad, I know, I was young and in love. I missed him, but I grew from that. As the deployments kept coming, the more I centered myself. The more I discovered that I get through those deployments. I still missed him. I still had my moments of self-doubt. I managed. I coped. As those little deployments at the beginning of our marriage prepared me one by one for the many years I was going to endure without this man. I will tell you, by the way, that nothing tests you more than a deployment to a War Zone. It doesn’t matter how many times they go over there, they are all different. It is during those times, when the advice of the seasoned Military spouses will get you through the darkest of your days.

On June 3rd, 2016, I became a Veteran Military Spouse. 14 years I provided love and support to my sailor. Never will I ever regret the moment when I said yes to that man. We have been through so much that I hope that my words of wisdom help someone struggling, as the advice given to me many moons ago help me get through the tough stuff.  I take pride in calling myself a military spouse. It was bittersweet for me to watch my husband retire. Listening to “Olde’ Glory” and The Watch being read aloud and, the remarks of the guest speakers who came to celebrate this man’s naval career made me reminiscent. Those moments of happiness. Homecomings, meeting his children for the first time, surprising him at work when he put on First Class and of course pinning on his anchors at the USS Utah in Pearl Harbor. It wasn’t until the sound of the whistle that signaled Piping Ashore, that it all came flooding back to me. It wasn’t just him saying goodbye, but I was too. The Navy has been a part of my life not just his.

As he transitions into this next stage of his life, I will be there to hold his hand, to love and support him, as I had before. That part isn’t anything new. For him, he will always be a Sailor and a Chief. A sailor till the end. As for me, I will always be the one who helped him maintain his footing as he goes forth. I too, will forever be a Military Spouse and a Navy Wife. A title that I am proud to have been given.

Wednesday, May 4, 2016

Why Politics should matter to the Special Needs Community.

It goes without saying that this year's political arena has been a mockery of what our country was founded upon.No doubt that the founding fathers of this great country are most likely turning in their respective graves as they watch from the hardened earth,  just how comical the Presidential Race has become. I say comical not in the funny hahahahha way, but in a way clowns can bring an element of sadness to their routines. In the past couple of months, we have seen the debates, where penis size has been discussed, wives have been discussed and how to make sure the everyday working man doesn't get sucked into debt while the rich live happy lives or how a student is supposed to pay for their education. There has been the discussion of Welfare and most importantly, Healthcare, but to some of the candidates, making sure the citizens of this country are taken care of is low on the priorities list.

For the most part, in my rants, I have kept a quiet tongue when it comes to politics. Politics has the ability to bring out the worst in people, but it needs to be talked about when you have politicians out there who don't care about the people they are supposed to serve and the job they were elected to do. I know you ask, so what does politics have do with the special needs community. Well, lots actually.

Let's start with healthcare. For us in the special needs community, healthcare is a big one. So many of us have loved ones that require extra medical attention. If we can't afford to pay our medical bills, our love ones suffer. If programs that help our loved ones are cut, thanks to budget cuts, there are no services provided that would help our loved ones out. Even with insurance ( and that is another post entirely), we still have to fight the system to just get basic medical attention, that doesn't even cover the extra trips to a specialist your loved one has to see on a regular basis. Look, I know that not everyone was thrilled with Obamacare. It has it's issues and kinks to work out, but if it meant that your medical bills wouldn't be as high as they normally would be, or you would be able to get the services you need to get treatment or even the medication at low cost. Or how about defunding clinics that provide low cost healthcare to those who can't afford the insurance premiums. So when you have a government that wants to take all of that away and or take short cuts to save money, that is when politics start to matter to the special needs community. I am not going to get into the lack of medical attention our service members get in regards to their medical needs. Let's face it cutting costs to programs that help the Veteran's medical well being only makes you look like an asshole.

Education, another big one for the special needs community. It is safe to say that most of us, who are already shelling out money for healthcare, aren't going to be able to send our children the top notch private schools this country has to offer, even with scholarships and such, it is still expensive. So a lot of us rely on our public education system to provide a decent education to our children, special needs or not. So when you are looking at cut backs to this system, the quality of education tends to lower. Teachers can't teach if they don't have the resources to teach with. Even with common core, that is simple math. Teachers can't teach their students when the school is falling down around them either. So when you have governments making cut backs in Education, the youth of this country suffers. For us in the Special Needs Community, it means that the programs that are put in place to ensure our children can learn are normally the first to get hit hard by the impact of budget cuts. Not saying that our children aren't important, but there are fewer Special Education classrooms than there are mainstream classrooms. Low man on the totem pole is always going to get hit the hardest. I could talk about when our children graduate, there is the possibility of them going to university. Its going to take them half of their lifetime to pay off student loan debt.

The everyday person. Most of us are not rich nor do we have a tree in the backyard that grows money. It is expensive to live. Food, house, car and utilities. For the special needs community we have added expenses, all of them are out of pocket. Gas for our cars to get back and forth from medical appointments. Special diets because our children get sick from eating processed food. Medical supplies. Paying for respite care, just so we can have a breather and not worry about our children for an hour or so. How does politics factor into that? Well it comes down to taxes. The average person pays more taxes than say a person like Trump. Banks got too big in their britches with tax breaks as did a lot of other corporations and because of this the lower and middle class families got hit hard with very little relief. Most of us in the special needs community, we fall into the lower to middle class and trying to balance a budget, when it's stacked against us is damn near impossible. I am willing to bet dollars to donuts, that we all have some sort of debt hanging over our heads. Now I am not saying that the government needs to start with hand outs but it does need to take responsibility for making the rich fat.

Again, I normally don't like to get political on my page or really on my blogs, as it creates the perfect shitstorm. As I sat back and watched a Candidate, who is known for mocking the disabled, spewing out racist, sexist and homophobic rhetoric all to insight violence, become the head of a political party, I felt that I couldn't be silent anymore. This election has been an eye opener in so many ways, but the real impact of it all, is how will the next POTUS impact the welfare of my children. So far it looks bleak. I am a liberal thinker, yes, but I feel that with everything going on, I need to voice my concerns I have concerning the political arena that is unfolding before my eyes. I know that not everyone is going to agree with me. Again, politics is a subject that brings out the worst in people. Whether or not Trump taps into your inner racist or Sanders taps into your inner hippie, it should be said that whatever Candidate gets the job needs to open minded enough to not mock those with disabilities, be aware of the job they are supposed to do, which is to serve the people who elected them in. I shall wait with abated breath to see what is in store for us come November and which Congressman I have to write to when the system goes down in flames, only to be ignored.