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. 

  

The Art of Shaming.

It seems that nowadays you can't walk out your front door without getting shamed for just about any aspect of your life.

Its the public shaming that hits home for me. I use myself as an example as I make up a good percentage of those who do follow me. I am a mother of special needs children, a wife of a serviceman and I am indeed a woman. Not saying that men don't have their own brand of public shaming, they do, but let's face it, for a woman, there is a good chance that anytime we walk out our front door we will be publicly shamed for any aspect of our lives.

I am going to break this down into the three areas I stated above.

Let's start with my parenting. Mom shaming. We are all so critical of other parents when it comes to different parenting styles. Since I started writing, I have noticed the appalling number of pages, blogs and websites devoted to putting other mothers down. If you don't breastfeed, you are doing it wrong. If you do breastfeed, you are sending the wrong message out. If you decided to circumcise your sons, you are a monster and if you don't you are setting your son up for an unclean penis. If you vaccinate your child, you are accused of child abuse because you are injecting "poison" into your child or if you choose not vaccinate your child, you are seen as uneducated. The trick for me isn't the online onslaught of mom shaming. Its the stuff that gets said to you in public. And the funny thing is, all of the stuff that is said to me, a woman in public, is never said to my husband. Another Dad will not go up to another Dad and tell him that he is doing the whole parenting thing wrong. Mothers, for the most part do a good percentage of the child rearing within the house. It doesn't matter how tired a mother can be or how much she is trying to parent her children in public, she will always get the unsolicited advice or the shameful comments about her parenting in that one minute she is out. But I have yet to hear from my husband that anyone has said anything to him about his autistic son and his stimming while out in public.

Wife. Now, I am a Navy Spouse, a Military spouse. Let's talk about all the wonderful things that get said about Military spouses. Or as some call us "Dependas" I have been married to my husband for 13 years. In those 13 years, he has been deployed for more than half of our marriage. In those 13 years, I have never once thought about looking outside our marriage.However, the insinuation is always there.

"Oh, you are a military spouse? Deployments must be hard. How do you remain faithful?"

Excuse me? How do I remain faithful? Its called marriage vows. Y'know those words that were spoken in front of a Registrar, that are legal and binding? And oh, maybe, I actually love my husband enough not to cheat on him. But that is the type of questions I get when I state that I am military spouse. Or in some cases, I get accused of cheating on my husband by others who can't respect their own marriage vows. If I were the one that was deployed, I am willing to bet that people wouldn't accuse my husband of cheating, while he was home being a parent to his children.

Woman. As much as gender equality has made it strides in the last 100 years, women are still not considered equal to their male counterparts. A woman at any given time will be shamed for being just that, a woman. If we are overweight, we are fat shamed. If we don't fit into society's beauty parameters, we are called ugly. If we call out those who deem it necessary to say sexist remarks as we walk by, we are considered a bitch. It seems that lately we don't even have control over our own bodies. We need to look a certain way, feel a certain way and act a certain way to be able to feel somewhat accepted. We are shamed into thinking there is something wrong with us. Most of the stuff said to a woman, would never be repeated to a man, but we get shamed for standing up for ourselves. Get called the "weaker sex" to which I reply, No we are not the weaker sex, in fact we are the ones that hold society together. Women have known for centuries what it means to be a fighter, not in the physical sense, but in wit, intellect and determination. No one will fight harder than a woman on a mission.

I write all of this, to point out that it really is a different world for women. There are so many double standards that aren't fair, but need to change. This is just my perspective. Now with all that being said, I love being the gender that I am and won't change it. Being a mother to children, has made me grow inside, discover a part of myself I didn't know was there. Being not just a wife, but a military wife, has shown me a world, outside of my own sphere. It has made me stronger and more independent. And being a woman? For that I look to all the powerful women who came before me. I draw from the strength they put out. Seeing the battles they have all won, either personally or publicly, makes proud of who I am.

So for all the Mom shamers, people who call military wives "Dependas" and those who need to make themselves feel better by shaming others, the art of shaming is a horrible way to show how to be a decent human being. From the websites to the memes shaming people you know nothing about. Its not funny. Nor is it in your best interests to shame people in public, it only makes you look like an asshole.

On a personal note, for all those who felt that I didn't parent my children right, or think that I have not respected my marriage vows or haven't represented my gender as society has dictated for me, its time to get off your high horse and look at yourself and the hypocrisy that surrounds you like London fog.

Please keep your Ignorance to yourself, Thank you very much.

It isn't a big secret among special needs parents, that we get presented with a lot truly asinine comments when we take our children out into society. It doesn't matter how mad it makes us that prefect strangers offer comments and "suggestions" to us. It doesn't matter how much we try and educate everyone on what it means to love and live with someone with special needs. There is always going to be that percentage of people who, have no filter, no empathy and no regard to our lives or the loved one in our care.

It doesn't matter that we have a full month dedicated to Autism Awareness and Acceptance. There isn't any amount of blue puzzle pieces that are going to change the opinions of others and how they see our loved ones. I have said this before that Autism and everything that is within that spectrum is a full time gig. 24/7, 365 days a year, lifetime kind of deal. Its not going to go away on it's own like a rash. It will be with this person for their lifetime. None of that stops people from saying cruel things to either the caregivers or the person themselves.

I have a child that has a genetic condition. One that includes Autism as one of it's many wonderful things that affects my child. There is nothing I can do, besides make sure this child gets the therapy and medication he needs to progress, grow and thrive. I can't do anything about his stimming or his sensory issues. I can help him the best I can, but those are things that will always be with him. They are part of what makes him, him. Y'know the stuff that he can't help. Stuff he was born with. So when people make the decision to open their mouths and say something to person living a life, with something the other person doesn't understand it is ignorance in it's purest form. To be honest, I really don't care if this comes across as sympathy searching. Its not. It just is becoming more clear to me that I can't walk out my front door without society looking at my son as some sort of reject of what is considered normal.

Now, before I start, this is not a bashing of religions. I don't give a fig about who you worship to or how or where you do it, as long as it doesn't infringe on my life, we are good to go. But if you go up to someone who has a child that is stimming in the grocery cart, not hurting himself or other people and you suggest to the parent of that child, that they need to have their child examined by a priest for a possible demon possession, then proceed to give that parent the name of a priest that performs exorcisms. Then when it is explained to you that the child has Autism, your response is "He is in God's hands now". You are indeed a person who needs to keep your mouth shut. I write this post after a exchange I had in the supermarket, with two god fearing women, who thought my son was possessed by the devil, because he was stimming verbally and flapping his hands. This, to be honest, was a first for me. Again, I have dwelt with some pretty fucked up things when it comes to my autistic children being out in the public. But this one, yeah this one was a first. The sad part is that there was going to be no amount of education about Autism that was going to shut these two women up.

Since my children were both diagnosed, I have never had anyone tell me that they were possessed or given the name of a priest who preforms exorcisms rites. To say that it shocked me, is a bit of an understatement. This only proves that it doesn't matter that there is month devoted to the education about Autism. It doesn't matter, really. People who don't want to learn about what diversity mean won't educate themselves.

So to the two ladies in the grocery store, pardon me if I will not take you up on your priest offer to exorcise my child. He is a child that is loved, taken care of and one that sadly has more of an understanding about the world around him, thanks in part to how he experiences it, than you both.

 Please keep your ignorance to yourself, thank you very much.

Do you really have any idea?

As I sit down to write this, I am coming from doing an over night EEG testing for my youngest son, so if my word are harsh or a bit brash, its because there was very little sleep to be had by either one of us.

A few days ago, I had some comments put on a couple of my posts that were very suggesting in nature that I, and like many other special need parents out there were doing it wrong. That we are parenting our children to make them be victims of society. That how could we, despite our best efforts to help our children grow and prosper. Now I normally don't pay much heed to the ramblings of trolls. By the grace of gods, I don't get that many, but when I do, they are of the epic persuasions. Maybe due to my worries about this up coming testing of my youngest ( thanks in part to the evidence of seizures), my mind started to go to that dark and very unhappy spot where I start to question, if I am truly a horrible parent. I know the answer is no, but a sleep depraved and worrisome mind can play those kind of tricks.

As I sat and watched the EEG tech put electrodes on my sleeping son's head, hoping to hell he won't wake up, my thoughts drift back to the comments made

"Its devastating that people like you are parents to those who are special needs. Clearly you don't love your children enough, as you are trying to hold them back"

People like me? Oh, you mean those people who would do anything just to make sure their children felt loved and supported. Those type of people who would not let anything get in their way, as they tried to provide for their children. Those people? The ones who have slept on shitty hospital chairs, just so when their children awaken from testing or a procedure, they saw a loving face? Or are the people you are talking about the ones who will battle insurance companies, shitty school systems or anyone else who stands in the way of their child's growth and development. If those are the type of people you are generalizing, then yes I, truly am one of those people.

They don't sit in the doctor's offices with me, nor do they sit in the IEP meetings with me either. They do not call the insurance company on my behalf in regards to testing that should be covered, but for some reason the Insurance is dragging their butts on authorizing it. These people who troll the blogs and the pages don't have one stinking clue, because if they did, just have one, they would not beat down a parent for doing what they think is best for their child(ren).

Its one thing to point out if a parent is abusive or harmful to their children, but for the most part everyone who loves their children and wants to see them live a life to it's fullest, are willing to go to the ends of the earth. If there is something that you tried and it failed, it doesn't mean it won't work for another.

When I write, I give just an inkling of what it is truly like in my house. Just as you all can't come and live with me to see my day to day, I can't do the same with all of you. I write because I feel that people need to know, that they are not alone. That if some of my stories are ones that people can relate to. I get that I am not everyone's cup of tea, to which I am not trying to be.

So many of us have our different stories. The diagnoses, the testings, the results and the battles we all face. Each and everyone of us has been there.

I drift back to Sunday night, when at precisely 2:30 am, half way through his EEG, he sits up and pulls half of the electrodes off his head. My thought was, he is 5 and doesn't understand why this test is important. As I start to sing him back to sleep, the tech comes in to try and figure out what do next, as we have only collected 4 hours of data out of a 10-12 hour study. I carefully cradle my son, in the hopes to get him back to slumber, I remind myself, a parent who doesn't love their child enough wouldn't be sitting here doing this.

 And for that, I ask those haters and nay sayers,

" Do you really have any idea?"

My answer to you is, No, you really don't. You don't live my life nor do I yours.