To the Guy in the Truck who screamed at my son...

To the Guy who was late for work,

I get that its Monday. We all get that it's Monday. In fact everyone most likely has a cause of the Mondays, but here is the deal, if you are late for work and having a crappy morning because of it, that is all on you. Nobody else. So screaming out of your big truck, " Get that F*CKING Retard on the Bus" and laying on your horn is not going to help you in the slightest. It just shows the world just what kind of a person you really are. A person with a very small heart and not enough love to give to the world.

I don't know the situation you are in that prompted you to scream at my son as he got on the bus, but let me tell you about ours, since you felt the need to scream a derogatory name at him. You see, he can't help being the way he is. Some days we move at turtle speed and some days we don't. Some days he is co-operative with his bus aide and some days he is not. He is, but a child. A child that has special needs. He can't help that the world is magnified 10x more than it is for you. He gets caught up in all 5 of his senses some days, which distracts him. But you sounding your horn and screaming at him, will not make him move any faster. And it is only going to anger me.

Now I don't want to think the worst of you. I truly hope that maybe you were just late for work and were frustrated that you managed to find yourself behind a bus or that in the heat of that frustration you said the wrong things. We humans do that from time to time, but the fact that as you drove past me, you felt the need to also further your seat in the " Asshole of the Day" club, you flipped me the middle finger. So all those possible hopes that I might of had for you to be decent person, were lost.

I hope that one day, you never have to experience the heartache that most of us special needs parents have to deal with sometimes on a daily basis. I hope that, that level of ignorance, cold hearted, mean spirited behavior never enters your world. Sure I could wish a bunch of bad things upon your person, but I am better than that. I hope that in time you will come to realize that acting so disrespectfully to someone, will get you nowhere. That people will see you for who you really are. A very small, ignorant, close minded person. They will judge you for being that person.

And for my son, the bus is his favorite part of his day, and I am not going to let people like you ruin that for him. There are so many little joys that, that boy has and the bus is one of them. With everything thing he has going on in his life, he doesn't need another person who doesn't understand making his life worse.

Very Respectfully,

The Advocate of a Little Boy who deserves to respected as a Human Being.


Note: I know that this person is never going to see this. But I wanted to write about it, for all those who have been dealing with no so nice people and the daily idiocy of those who can't be bother to be a decent human being.  

Fighting the Demons Within

Before I even say a word, I am going to point out that everyone has their own demons to fight. It doesn't matter were you are in your life, we all have our own separate demons that we battle in our way.

Some could look at me and see a fairly optimistic person, who is cheerful, always smiling and generally happy person, but in reality, I am dying inside. Behind that person I present to the world, is a person who is fragile, anxious, nervous, scatterbrained, depressed person.Being as that is who I am on the inside it sometimes is hard for me to break through those barriers to try to present myself as that person that everyone sees.

I am not going to lie to myself or others out there who are fighting their own demons, that depression is a scapegoat to how I or they feel when faced with an epic case of the blues. Nor is it something that people should ridicule with idiot questions like " Oh they will snap out of it.. " or "What do you have to be depressed about?" For those of us who do have clinical  depression, trying to explain to people the why and the hows of a mental illness gets tedious. Like everything else going on in our lives, we own no one an explanation. Depression is that demon that everyone deal with differently. What could work for one person, isn't going to work with another.. " Oh just go on antidepressants for awhile, till your mood lightens up..." It doesn't work that way. Most people think that medication is an easy fix. Its not. It helps, sure, but it isn't always the answer. People don't get that its a combination of things. Like going to therapy and taking medication. Trying to sort out what is going on inside your head sometimes is the biggest demon of all and with that battle you need help.

I am going to get candid for a moment about my own struggle with my own demons. On the outside, I seem a pretty happy person. I enjoy the company of others, I like to help when I can and I can have a good laugh, but on the inside, I have all these worries and emotions that dig at me, and while I try my best to keep those at bay, there are times where I can't seem to keep those demons off my back. I am not afraid to admit that I medicate and that I go to therapy. Two things that have helped, but even with those two very important things, I still have my days, where I would like to sink into my dark cave. For those who don't understand what it is like, here is the best way I can describe it. Imagine if you will, being stuck, no matter how much you try, you aren't going anywhere, but far off into the distance you see where the light is at the end of the tunnel. You struggle so much to get moving towards that light, but it is a very slow process. Sometimes there is things that help you move a little faster and then it either stops or slows down. But your goal is to try to get to that light source, which is your happiness. This is my battle.

What I hate is the misconception that mental health is not considered a priority to most. It is considered weak to admit that you might be depressed, anxious or stressed out. It is considered an invisible ailment. One of the reasons I write is to try and get my thoughts in order, but it is also a way to bring to light a problem that most of the population suffers from, but yet won't get help for, thanks to all those misconceptions.

I know that sometimes it is difficult to admit that you might need help. Whether or not it is medication, therapy or both. I know that look on people's faces when you say you are in therapy or you mention you are on medication. "They must being nuts, or off their rocker" I get it. But for those times you feel stuck and are battling those demons alone, know that you don't have to do it alone.

One thing to be said is that, I am ok with my mental state. Its not perfect and it needs constant work. I admit that yes, I do medicate and I do go to therapy, clearly I am trying to take care of myself and there is no shame in that.

For all those who want to dispel what depression is like, consider this, your feet are stuck in a spot, for which you cannot move and what you want in life is a few feet ahead of you all while trying to deal with those demons life throws at you, try and get it. I dare you and without help, you aren't going to get what you want. Depression is just like that. Being stuck in your own mind and trying desperately to move forward when you can't.

For those who are truly in need of help, please get help.

http://www.suicidepreventionlifeline.org/

Your Child's health is important to us.Blah, Blah Blah.

Its been a long week. Between trying to get back into the workplace after a 14 year absence and getting children back to school as well as juggle my schedule with my husband's to say that I am stretched a little thin is an understatement. I know that there are others that are rowing in the same boat I am all while trying to make sure our children are taken care off. So when we have something that makes our lives that little bit harder, we tend to grit our teeth, hunker down for the battle that needs to be fought and do what needs to get done.

I have pretty much resigned myself to the fact that the people who do the administrative work in regards to my child's healthcare are people who strike me as ones who don't like their job very much. On top of being literally exhausted, I am finding that I am doing the administrative work of someone who should know better. This has been an ongoing struggle in the management of my youngest child, because his life is a little bit more complicated than the other two, it seems that so is the paper chase on getting appointments and procedures done. While I commend the people who genuinely help me through it all, there are the ones who road block me at every single turn. I know in the past that I have written about how I don't think its fair that a child, who can't help having a genetic disorder, who gets treated like just another number or statistic.As a parent it truly frustrates me to no end, when administrative staff of big medical centres or hubs talk about your child in that manor. It is also especially maddening when you are the one doing the job they are supposed to be doing, contacting your insurance to make sure things are covered or tracking down referrals, but there is nothing more infuriating that a person who completely screws you over, because of their unwillingness to do their job correctly.

For the fourth time this year, I have had to pull up my big girl socks, put my butt kick boots on and prepare for battle because someone in their infinite wisdom thought it was ok to mess with my child's healthcare. Yet again I had to cancel an appointment at a "Top" Medical Centre here in the area, because someone within their admin department can't get their shit together. Again we are talking about a five year old child, who can't help having something that requires extra doctors and services. I get that doing paperwork all day is monotonous. I have had that job, but at least when I did that job, I did it with pride. Why? BECAUSE IT WAS MY JOB! Every time I complain I get the same response "Your Child's health is important to us..."

So when is that going to be actually true? I mean as soon as you cut through all of the red tape and obstacles that have been lined up in front of you, you might get a decent doctor and medical staff that actually wants to help you out. But it is a sad reality for most of us, that by the time we get through all the administrative crap, we are so exhausted that we have to ask ourselves, "Is it worth it?"

The answer is yes. As much as it pisses us off that our children and loved ones are treated this way, we still must continue to make sure they are getting the best care they can. We continue to fight those who don't care about the job they do or those who think of your child or loved one as simply a number they have to deal with during a day.

Honestly, if it weren't for the fact that We, at the moment don't have another option for the medical my child is receiving, I would have walked out the door and never looked back. We are trying to make life easier, not harder.

Instead of getting annoyed at us caregivers when we ask you do your job or telling us because someone on your end messed up that we are financially responsible because the referral isn't where it should be, how about you treat us with respect and not idiots? Good Customer service goes a long way. And if you serve the public and you don't feel like doing your job, then look for another one that doesn't deal with us.

As for my situation, well I am just going to keep complaining till something gets down about a problem that is vital to my son's well being, as that is what a parent is all about. As my child is not just number and I am certainly not a person you can placate with false statements that you care about my child's well being.

Diagnosis Day- One year after.

I remember the day like it was yesterday. Sitting in a nondescript doctor's office, thinking that it was going to just be a  routine checkup for my child. Husband deployed of course. As I watched my child, who on the floor happily playing and stimming away, the doctor quietly hands me a piece of paper. As she gives me what is the lab work done on my child, she is explaining to me that these is the result of the Fragile X testing we had done on my youngest son. It has come back positive. There is a feeling of numbness, that I don't think any parent who, when faced with getting a diagnosis regarding their child, can forget. Everything just goes blank. There was a point,for me anyways, where I could literally feel my heart break. I sat there, not being able to see clearly. Although, this wasn't the first time I had sat in a doctor's office and received a diagnosis for any of my children, but it was the first time where I thought, " What more can this child handle?" and " How much more do I have to do as a parent to make sure he will be ok?" Of course it meant more doctors to see, more specialists to talk to and more time that I need to make for this child. That day I am surprised I was able to drive home without getting into an accident. 

It has been one year since that day and what has transpired? The good, the bad and the ugly. To be honest, it has been a bit of a roller coaster. While we have learned to accept this diagnosis as this is part of who my son is, we have also seen some of the challenges he will face growing up with this diagnosis. We have endured testing through out the year from EEGs to Neuro-psych evals, with results that have either been informative to devastating. We have had to re work IEP goals with our school in order to find a way to incorporate what comes along with this diagnosis. Our biggest challenge this year, was dealing with the insurance and medical aspect of having a new diagnosis tacked on the all the other ones. For us, at least, it seems to be an upward battle to get people to see your child as not just a number but a person. Our struggle to get things approved or even recognized by some who are part of this child's life, has been frustrating to say the least. So what do you do? You push through it. 

One year after the fact, we have learned how to fight a different battle for our child. I have educated myself more on Fragile X, as I had to for the Autism part of our lives. I made sure that I researched all I could about my son's disorder, so that way, when I come up against a wall I was somewhat prepared for it. Each new doctor or specialist got added to our list, each with different questions that need to be answered. I relied on the support of my family and friends to get me through the days that I didn't think I would be able to make through.

With any diagnosis, the support is essential. Knowing who is going to be there for you and who isn't. Its the people who ask you what you need to help get you through it all, are the ones that are important. Anything from an ear to listen to you vent in frustration to the ones who offer to give you a moment to yourself. In the past year, I have discovered more online resources and support regarding my son's diagnosis. There is something to be said about an online community, we may not know each other personally, but we all know too well just what boat we are rowing in.

So a year after. We have all grown. We have all learned how to take things as they come. One step at a time. We will continue to move forward, the best way we know how. And as each Diagnosis Day Anniversary comes and goes, we will continue to live our lives, grow and prosper. For anyone who is just getting their first diagnosis and is in that state of disbelief, I feel you. I understand you. The first year, will be rough, but in time you will find your groove. You will learn and understand just what it means to have, or have someone you love have a diagnosis that impacts your life. It isn't going to be easy, but know there is a ton of support out there, we are here and we understand.

     

We are "That Family"...

It never fails that when we go out as a family, we are the ones that normally bring a lot of attention, not because we are any one of the celebrities that hog up internet space with their vapid existence, but we are a family that has special needs children. With having special needs as part of our family routine, often enough, we are the ones that turn heads, not because we want to, but because we have a dynamic that the rest of the world isn't use to.

On the outside we have learned to get used to the looks of sympathy or the whispers being said. We are even getting good at coming up with some pretty snappy comebacks to those who feel we need a talking to, in regards to our very awesome and spectacular parenting skills. But what happens to us on the inside? A lot of us parents, are hurting inside. We are reeling from the cruelty of the outside world. All those hurtful comments and whispers pile up. Those stares and looks are engrained in our brains and at the end of the day when we have our five minutes to ourselves, shortly after we have taken the long time to put our loved ones to bed, every thing comes back to haunt us. As much as we try to educate those who willing to learn and those who aren't, we still can't shake off the perception that the outside world has of our family. A lot of us just want to scream about how it isn't fair to be judged so mercilessly and that we wish that all those who have, could just for once learn what it means to walk in our shoes.

 Have the Ultimate Special Needs Experience! Its not going to be like a ride at Disney or an IMAX feature. It would tapping into what makes them a decent human being. Opening up their hearts and minds to something that is different from their norm. It would be sleepless nights of worry or a loved one that doesn't sleep. It would trying to get back and forth from daily errands, like grocery shopping, with having to manage a person who needs a little extra time.They would have to go on outings like restaurants, parks and possibly a pool and deal with people staring as their loved one attempted to fit in with the rest of the world, all while having no control over their own bodies.  They would have to go to doctor appointments, sit there and listen to the doctor tell them not so great news about the person they love, try to get home and process everything. They would have to argue with a school administration that their loved one has potential but just learns differently. The sad part is, this not even remotely half of what it means to be part of "That Family".

 For us the caregivers, it weighs very heavily on our hearts and minds when we deal with everything society throws at us. There isn't a person on this planet that wants to be subjected to ridicule on any kind of level, which is why when it is pointed out to us publicly just how different our family is to yours, why it hurts us inside when society can't accept difference and diversity.  

 It doesn't matter for most of us how much we promote and educate what is dear to our heart, we will always be "That Family". People are always going to comment and or stare. We will always have that sympathetic vibe following us. But in reality, we don't sympathy or the God will only give you what you can handle talk. In reality, what we want, is not to be "That Family". We want to be accepted like every other family that has children. A family that looks like they love each other.

I know that there are people who are kind and respectful when it comes to special needs. Wading through the comments and stares, we find those decent human beings. It's those people who take the hurt out of our hearts. They remind us that not everyone is judgmental.

So I guess if we are going to be "That Family", the ones who love each other or the one that shows the world that even though there are differences, we still accept each other for who we are or the one that operates as a family unit in the best way we know how, then so be it. At the end of the day, when it is quiet, we can lament on what it means to take what life throws at us and handle it the best way we know how. We know it isn't going to be easy, life isn't easy. Its hard work but at least we have each other to get through the toughest of times. And that is what it means to be part of "That Family".

 

The lifestyle you ordered is currently unavailable, have this one instead.

I recently saw a meme the other day that read:

" The lifestyle you wanted is permanently on hold" or something to that effect.

It came from one of those pages that have the witty quotes. As most things that I come across, it got me thinking. Remember that time, way back when, when you were young,trying to find yourself and daydreaming  about the life you wanted to have. You know the one. The one where you marry your crush, you have a fantastic job that you love and your children are the envy of all your friends? The highly unrealistic one? Yup that one. It looks good inside your head, but the reality of it is just a dream. You can have certain aspects of it, but it isn't always going to work out according to how you plan it, as life goes, there will always be things that will happen to you that will change whatever perception you had on your lifestyle.

Like most people, I, too had my own dream of who I was going to be when I grew up. What I wanted out of life. The naive me was a person who tried her best to be a good person. A decent person. A person that wanted someone to accept her and love her. A person that wanted to have children. I had these expectations of what I thought I was going to get out of life. And boy did I sent the bar high. I think most people do and when we don't reach that bar, the element of disappointment is what drives a lot of people into depression, including myself.

I think the trick being, learning to change the things you can change and learning to accept the things you can't. They always say that life is what you make of it. In a sense there is some truth to that. I look at myself as the person to make those changes happen. Whether or not it's a change on views or things that I have to work on for my well being. Granted, it takes a lot of work to make yourself feel better about life, and life at times doesn't always work with you on help you achieve those goals. Sometimes it's what life throws at you that makes you realize what kind of person you are. It shapes you.

For myself, I never thought 20 years ago, that I would be married(to a US serviceman), a mother who has special needs children or be writing, but here I am. This wasn't the life I had envisioned for myself, but it is the life I have. Do I have some regrets? Yes. Everyone does. Everyone has those times or moments where they wished for a do-over. The older self going back and warning the younger self not to make a certain mistake. Although, when you look at it, its those mistakes and bad decisions, that made us who we are today. Learning from those mistakes and trying hard not to repeat them. Are there things that I, personally, would have done differently? Yes, but I accept that there things that have happened in my life that were beyond my control to fix or change. Its those things that have shaped the life I have now.

We all go through those days where we think to ourselves " I didn't sign up for this..". That thought always pops into my head, when it has been an extremely shitty day. Y'know the day I am talking about. That one where at least one or every child has thrown up in a place that needs to be scrubbed out, something has stopped working,you have somewhere to be and you are running late. Those days that try every ounce of patience you have. And you think to yourself.. this is not what I envisioned for myself. We all have those feelings and there is nothing shameful about having them either.

As for me, well I don't have the lifestyle my 20 something envisioned for herself. I have a lifestyle that has challenged me to grow as a person. I have a person who loves me for who I am and for who the person I am evolving into. I have children that teach me more about life than anything. Yeah I have had things happen that have definitely game changers to my dream, but in the long run it's those game changers that have made my lifestyle more realistic.

No I don't have the lifestyle I thought I ordered, but I do have one that has opened many doors that I didn't think I could open. And that is something I would never change, the ability change what I can and accept what I can't.

Saying good bye to a Friend..

Death is just one of those things that most people don't want to talk about or accept, but as the circle of life must go on, in the end everything has mortality. When the facts are right in front of you, then why is it so hard to accept that possibility. My thought? Love. To love someone or something, it is very hard to let go of that bond you had. And for some it is even harder when you don't quite connect with the emotions that are behind the love you or they had for someone or something that has died.

Last week we had to say goodbye to one of our dogs. She wasn't an old pup. She was 7. While her death hit me like a ton of bricks and still does, I worried more about how her death would impact my children. We had gotten her as a puppy and at that time we where in the process of getting my daughter diagnosed with Autism after a very long battle with her PCM and my husband being deployed in Iraq. The puppy was a welcomed joy within our house. While my eldest had the curiosity of neurotypical 5 year old, my daughter, who at the time was non verbal saw this puppy as something completely different. Here was this little animal that was bouncing around playfully, barking and being silly, that was so out of my daughter's norm, she didn't know what to make of it.At first she would follow the dog around and the dog would follow her around. But since she didn't have the voice to vocalize her feelings towards to the dog, she just sat back observed. Something she still does quite well. As for the dog, well she was getting used to her new family as well. There were moments between the barking and playing where little girl and little dog would have their bonding. Just sitting and watching the world do it's thing. When we finally got my daughter into the services and programs she needed, we started to hear words come out of her mouth. Slowly and surely, she was able to call the dog by her name. Mojo. She lit up like a Christmas tree when the dog came to her when she called out her name. Thus became the relationship the little girl had with her dog. Through out the 7 years of Mojo's life, we have added a few to our family. Another dog for Mojo and another sibling for Little Miss. Mojo was happy to have another furry companion added to our pack just as we were all happy to have another baby in our family. In a few short years we would come to learn that our youngest, would have special needs of his own. Mojo, with her gentle nature was there as a calming force. She didn't mind that the kids stimmed around her. When my youngest would get over excited about something, she was there beside to help him with his sensory overload. In a way, she was our own little therapy dog. No she wasn't formally trained, but she had the instincts to know when she was needed to calm things.

It's been a week since her death, while our other dog had gotten used to his bud not being around and my eldest is also getting used to her not being here, my other two are going through their own way of grieving. Little Miss, who doesn't talk much when it comes to relating to emotions, grieves with questions. While we have had many conversations about death and what happens after something had died, everyday we are met with the same questions over and over again. She didn't get upset like my eldest, but she had noted that Mojo isn't here anymore and that her friend is gone. As for my youngest, he knows there is only one tail to get excited about instead of two. I have noticed that instead of screaming "PUPPIES" when seeing the other dog, he just yells excitedly, "PUPPY" and taps the other dog gently on the head. This goes to show we all grieve in our way. We all express our feelings differently. Autism or not.

The kids picked out a picture they all liked of Mojo and put it in a frame, that now sits on a table with grandparents and relatives that since passed on. I have always told them, that the best way to remember someone or something they loved that has passed on, was to treasure the good memories they had with that person or thing. Keeping the memories alive in their hearts, keeps the spirit alive.

It is remarkable on just how much impact a little dog could have on our family. We have been a bit lost without her, but in time I know we will find our way, just as she is finding her way on the Rainbow Road.