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.


Sunday, April 10, 2016

Loving a Sibling with Special Needs.

With it being National Sibling Day, it needs to be mentioned that children who have siblings that require a little extra love and support need to recognized as well, just as much as the sibling who has special needs. It needs to be said that it can't be easy to be a sibling of that nature, but it is certainly rewarding.

I look at my eldest, who thankfully only has to navigate through the wonderful world of ADHD, become a protector to his younger siblings. It wasn't forced or suggested to him, but it was something that came naturally to him. Since the day he became a big brother, he has always had this sense being someone's champion. That mentality came when we brought him home a little sister. Here was this little baby, that he had no idea what to do with. When she came home from the hospital, he was almost two years old, but even then he was enthralled by her. He loved to read to her and have conversations with her, even though she would just look back at him wide eyed. As she began to grow, he was the reason she smiled, as she knew that he was coming to entertain her. We still had our moments of jealousy, but at the end of the day, he knew she was his little sister, he could love and protect.

My eldest was always a talker. As my mother used to say, he could talk the legs off a table. So I gauged a lot of milestones off of what he had hit. So when my daughter wasn't talking and started to withdraw from the world, it stuck me as something was wrong. For almost a year, I fought with our medical personnel  at the time to get some sort of referral to anyone who would see her. I kept being told no, as they thought she was a late bloomer. My husband at the time was deployed, so my son who was three, took it upon himself to be the "Man" of the house. I noticed, he would talk for my daughter. At first I thought, he was just exerting his brotherly power over her, but then I noticed, with her not vocalizing her wants and needs, he was telling me what she needed and wanted. It was almost like he just got her. He understood the garbled language she had adopted as her own. It was that little connection he had with her.

When we finally got her autism diagnosis, it was a game changer for everyone. It meant that we all needed to work around her schedule of doctor appointments, in home visits with an ABA therapist. Which for him was a little difficult, as he was always used to being the life of the party. When my husband and I had to shift our attention towards our daughter, there was a little resentment as he was at an age, where he didn't understand the why of having a sibling with special needs. As much as we tried to include him, it was hard for him to identify with his sister, but the fact that he never stopped trying speaks volumes to his character.

It was when he was faced with having two siblings with special needs, did we see him become their champion. In a way it has taught him to see the uniqueness of people. Keep his mind and eyes open. I know there are times where the mass amounts of doctors appointments and the ever changing schedules get tiring for him. It does take the toll on him. In time, when he is mature enough to understand completely about what makes his siblings special needs, he will be a better person for it. Fighting for someone will mean something to him. Loving someone so uniquely will but things in perspective for him. It will be a lesson that teaches him that everyone are human beings, that just deserve respect in the simplest of forms.

His siblings, like any siblings do what siblings do best, they are his first friends, they are the people that might annoy him the most, but at the end of the day, he would stop for nothing to make sure his sister and brother are taken care of. He will love them unconditionally. He would go to bat for them at any given time, but most importantly he will be a better person because he has them in his life.



Wednesday, February 17, 2016

The Face behind the many masks. The true face of Depression

Nothing snaps you back to reality, making you realize you have a problem than sitting in your doctor's office as he gives you the result of a questionnaire you just did on how bad your depression is and you score in the moderately to severely depressed category. After the "Are you suicidal question?" it felt like a snap back to reality. One that made me look deep inside myself to answer, but in the process woke me up. Woke me up from this haze of pretending everything was ok, when it was not. Now I am a smart enough person to recognize when I need help or that my routine isn't working for me, thus me sitting in a doctor's office doing a questionnaire about how depressed I am. I am not stupid enough to think I have never had a problem with depression. In fact, it has been a constant struggle all my life. It has been a struggle trying to find the right cocktail that works for me, so when I hit my lows, I have something that works for me. Its when I hit my lows, its the one surprising think about me. I can put on a mask and pretend I am not dying inside.

I try to be open, as I am willing, about my struggle, as most people don't often see that side of me. The mask I wear most days, is a happy, easy going person. A person who always has a smile on their face and hopefully a demeanor that puts people at ease. A person who is there when you need something of her and doesn't expect anything in return, except for a smile back. For me, there are days where it is just a struggle just to put that mask upon my face and pretend that all my worries and anxieties aren't bringing me down. There are the days where I slip and I am vulnerable. I hate that. I hate when people can see your weakness, because as we all know there are people that will take that to torment you with. There are the few that will help you back up when you stumble and fall, but in the harshness of this world, those people are very few in numbers. To person who is struggling to stay afloat, the harsh outside world is not the ideal place as it plays on our weakness, thus put in motion our anxieties.

A few years ago, I was diagnosed as clinically depressed. Started seeing a therapist and was put on medication to help me function. I knew at the time, that this was the first time in my life where I didn't see myself as a person who had the occasional highs and lows.  I knew that everyone in their life time gets depressed, but most bounce back. Thanks to a little therapy, maybe medication and a good support network. Clinical Depression echoed in my head like a swiss yodeler as it was made very clear by my therapist at the time, that this was something I was going to have to work with for the rest of my life. Now I get that I don't have some life threatening disease, I do have something that effects the way I function and feel. Where at times I can't help my brain from running amuck. I can't help those times where I feel so low, I can't see the fading light above me. That asking for help sometimes isn't an option for me, as I don't think people will understand or will label me crazy or unstable.

For people who are battling depression, it isn't as simple as trying to think happy thoughts and pushing the bad ones out. It's more than that. Most of us don't sleep well, we lose interest in stuff that normally we care about. There is very little motivation to care.

I am not going to post a selfie with my medications with a big happy smile on my face nor am I going pretend that everything is ok with my life. In truth, depression for me, is the face behind that mask. Yes I am medicated and yes I go to therapy, but I am not a happy person inside behind the mask I wear. I am a sad, angry person, that wears her emotions on her sleeve,  who wishes she wasn't like that. Wishes she didn't have this pain inside. A person that wishes that some days her smile was genuine and not plastered on.

With everything that has gone on in my life in the past two years. Deployments, diagnoses, going back to work, it has taken a toll on my mental health. Some days are good, but some days are bad. When its good, the sun is shinning brightly, but when it's bad, the thunder and lightening are very present, its on those days where I need someone standing there with an umbrella.

I know this going to blow people's minds who know me, as most see me as a bubbly, happy person 90% of the time. Know that writing this, opens me up to vulnerability in my own mind. Some might see it as me being silly and not in touch, some might see it as a ridiculous ploy but some might see it as something they identify with. Regardless on how you see it, it this is my story to tell, whether or not you agree.

My hope is that one day with the right cocktail, I will be back to being that happy, jovial person, but in the meantime, I will put my mask back on, while I continue to work on myself to be a better person for myself and those around me. Pardon the mess.