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.

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.

Dear Rosie..

Hi! Hello!

I know you don't know me, which is ok. Being a celebrity, everyone knows who you are, but for us who aren't, we are nobody really, to you. But that is going to change. A lot of us have followed you since you got your career started. We were there when you had your talk show. Laughed with you when you proclaimed your obsession with Tom Cruise and many of us thought your performance in League of Their Own was pretty awesome. Most of us supported you when you came out and we didn't care that you were gay. We supported you when you adopted your children, as there are so many children who need of loving homes, both neurotypical and special needs. So when you made the comment that you would have rather deal with "Autistic Triplets, than having to deal with your children, that you adopted, I could see how the special needs community would have issue with that. For many reasons. It was when you were confronted about your statement by a parent who's child is autistic, you made a cold statement about how autism wasn't the punch line, you were. Now I get that you being a celebrity, most of the opinions of us nobodies, doesn't mean much to you. But in reality it does. Here is why.

Acceptance. Simple right? Us nobodies accepted you as a Gay person. A person who adopted children and a single mother for the most part. Now I get that there were haters along the way, but it was us nobodies who carried your celebrity status. Supported you against those haters. We accepted you. Now your comments about autistic triplets was ignorant and thoughtless. We all know that you are having issues with your eldest daughter. Whether or not she is coming to terms with her own mental health, but regardless, your issues are not the same as the ones we face everyday with our special needs children. And vice versa. The trick being, Ms. O'Donnell, is that most of us try do what ever means necessary for our children to have a better life. One that you promised all of your adopted children when you adopted them. Now I am not going to pass judgement on how you have dwelt with your issues regarding your children. That is not my place, but when you think that autism is a piece of cake rather than having to deal with the four children, again you adopted, you are very sadly mistaken.

Now I could launch into my own family, but it isn't going to matter to you. Obviously, I am a parent of special needs children. Two in fact with Autism and a genetic disorder. Go me. I don't have the luxury of having the top doctors at my disposal or nannies to take care of my children when I haven't slept in 48 hours, because one of my children has a sleeping disorder. In fact, to add to my fabulous lifestyle, I have a spouse that deploys. So while you seem to think that having to deal with autistic triplets is like winning the lottery, as a opposed to having to deal with your own children's issues, like any parent would, the rest of us are struggling. Struggling to find good healthcare, struggling to make a school see that our children need that little bit of extra help in order for them to learn better. Struggling against society's views and stereotypes that get placed on our children( one thing you should know a lot about)

So even if you didn't mean to make autism the butt of your joke, you did. That makes you part of the problem we as nobodies, have to deal with when we are up against social attitudes. You being a celebrity have that power to make a change about how the world view things, as people listen to you. I and many others like me, are just a small community who are trying to make our voices heard, as we echo our children's.

Before you blast anymore twitter posts about how you were supposed to be the butt end of your joke, take the time to listen to those who have supported you over the years, when society has reared it's ugly head in your direction. It was us the supporters, who defended you. Please be that for us.

Very Respectfully,

Just one of the nobodies

We are still not there yet..

It shouldn't be a big shocker to know that our children still have an upward battle to again acceptance in today's society. It saddens me quite a lot when I still see how social attitudes in regards to the special needs community are still being projected. Especially towards adults who are special needs. I know that one day, my children will be adults and will be out in this world just trying to exist the best way they know how. It doesn't matter if they have the life skills to take care of themselves, they will eventually become adults, whether I like it or society likes it.

In the past couple of days, it has been quite evident to me that we are still not there yet. The language being spoken in regards to the disabled still needs some work. Even with campaigns like  Spread the Word to end the Word, words like "Retard" are still being used, whether it be in an insult or outdated terminology. For me, these past couple of days its the way in which I have seen society act or converse with those who are special needs. Just because there might be some sort of sign that someone might be cognitively, mentally or physically impaired doesn't mean that we as a society should treat them any less than you would anyone else. It comes down to respect. Yes it is evident that someone is impaired for whatever reason, but to talk to them as if they don't understand is disrespectful. Now I get that with some mental illnesses and cognitive disorders, a person might not understand, but if the person is coherent enough to acknowledge your presence as well as carry on a conversation, than treat them as you would an unimpaired person. Even so, if they are not, still don't treat them with disrespect. They are after all, still a human being, one who doesn't deserve judgement or ignorance on your part.

As I sit down to write this, I must think of the respect of the caregivers. Us, the loved ones. The people who thanklessly, provide love and support for those who need it. Now we do it because we love someone who requires a little bit of extra love and support. Most of us are relatives, parents or friends. Some of us are ones that are trained in a field to help those special persons. So when we hear disconcerning conversations or remarks about the special needs community or a person with a disability, it only makes us want to work that much harder to bring education to those who aren't immersed in our world. I am not saying that you need to start volunteering at a school that has special needs students, but gain some perspective, that for many of us this is our lifestyle. It doesn't stop at the end of the day, nor does it for the person we take care of either. So when you think its cute how I say special needs instead of mentally retarded or referring to a person who has a mental illness as some "Crazed Adult", it just proves to me and others that we are just not there yet.

There is always going to be ignorance and fear of the unknown. I don't expect everyone to understand my station in life or my children's, just as I am not expected to understand why and how some else lives their life. Yes you better believe that when I hear someone misspeak about something they have no clue about, I am going to correct them, and if that embarrasses them, not my problem. I am always willing to educate those who ask, but I do ask for respect. Respect that I am taking time to educate you on something. Respect that, that is part of my life and most days, my way of life.

Right now, we as a special needs community, we are not there yet in our battle for Acceptance. It will be there when news outlets will stop blaming our community for the reasoning behind murders and other crimes. It will be there when we are not judged on our parenting and caregiver skills. It will be there when people will stop and think about the words coming out of their mouths. It will be there when there is decent funding for our children to succeed. It will be there when special needs is seen as Human and just that, but we are still not there yet.

Hopefully in time we will be.

 

Feelings from the Island of Lost Toys.

Growing up sucks. I am not going to lie, it just sucks, especially when you are at the age of trying to find yourself. When we were small, we were all pretty much the same. Small little humans venturing out, exploring the world and the people around us. Sometimes we made mistakes along the way, but we learned what was right from wrong. When it came to our social world, we started out liking everyone, because at a young age differences didn't matter. If someone liked the same cartoon as you, you clicked and you were instant friends. But as we grew up, we matured. In the process, we start to see the world differently. Differences are noticed, behaviors change and that wide open minded, carefree innocence starts to harden. So what happens to those who stay in that bubble? Some get lost in the shuffle of a social life, as they don't always know how to properly deal with the social norms. Some are made fun of, because they don't know how to fit in. And some are just plainly ignored, as they are seen as a person that is misunderstood. The sad part is most of those kids who fall into any of those scenarios are the ones who are trying so hard to just have people like them and accept them.

As a parent of two children with cognitive and developmental delays, it is sometimes very frustrating to watch your children grow up. You celebrate every victory they have, but at the same time you grieve the moments that give your child heartache. For my youngest son, the outside world means very little to him, as he is quite content in being in his own little bubble, where my daughter, who does understand the world around her, struggles with being a girl, who just happens to have autism. I think for any parent to stand back and watch their child struggle would be hard, but watching a person who doesn't quite understand why she isn't included in something is a difficult task. It is especially frustrating when your child is one that lights up at the sheer mention of friends or anything to do with friends, but yet in reality they have very few. There are people who don't understand them, but tolerate them. Then there are the people who are mean and nasty and say things that are hurtful. Then there are the few, that look past what makes your child different from the rest and still wants to hang out, regardless of the hand flapping or the over stimulation behavior. This person likes the same things I do, therefore, they are good in my book. To those kids, who view my child as just that, thank you. Thank you for including my child in something. Making sure that they feel wanted. That you appreciate the friendship my child can give you as most choose to ignore my child because she is different. Thank you for taking a chance on my child as it will be a friendship that not only opens your heart but your mind.

This world can be so cruel to those who don't fit into the norm of things. So when I see the spark of a decent human being, it warms my battle weary heart. I honestly think that exclusion is one of the worst things for children who have cognitive and development delays. Being around children teaches not only them on how to behave socially, but it teaches the children around them to accept the differences.

So if you have there is a child in your child's class or social groups, that is special needs, don't assume they don't matter or don't understand when they are excluded from something because you simply don't understand them. As much as they might experience the world differently, they still have feelings. Now I am not saying that we all must bend over backwards to accommodate those with special needs, but if you are going to include 95% of children in a group setting but yet exclude those who don't fit your idea of your child's friends, that isn't fair, especially to a child who only wants to been seen as part of the gang.

As I watch my children make their mark on the world and come into their own, I am proud to know that they will go forth with a good heart. They might have very few friends at their sides, but they will have those around them, who love them, support them and will be willing to step up to the plate when they need a champion. The power of a good friend can be a life changer to someone who has difficulty making them. If your child comes home one day and tells you that their best friend is someone who is a little more special than the rest of the children in their class, keep your mind and heart open to what this friendship has to offer and the lessons everyone will learn in the process. 

I know that if my mother hadn't had an open mind and an open heart 32 years ago when my best friend was a wheelchair bound child with spina bifida, my idea of acceptance would have been a different one.

Being part of the other X-Men- Sharing a diagnosis with my Child.

The X-men are pretty cool. In fact the fictional group of mutants have been a staple in many people's lives thanks to the comic books, cartoons and movies. From Professor X to the awesome Wolverine. All mutants. While being part of that X-Men group would be pretty awesome, saving the world and all, there is another group of X-Men where the perks aren't glamorous or exciting. It is the many who have a rare disorder called Fragile X.

Last year we found out that our little X-Man, had Fragile X. While it was the reasoning behind why he has autism and a host of other disabilities, it also opened up the door to the possibility of something underlying in our genetic family tree. Most people have no clue what Fragile X was. I had heard of it before I had children, but never really understood what exactly it was. For my son, it has been a year of testing, procedures and mix and matching medications that will help him in his daily life. Back and forth to the clinic to log in data. As we talked with the many doctors that are now following my son, it became abundantly clear that this disorder was one that would affect not only him, but the rest of us as well. This disorder still had an impact on all of our lives, simply because we loved someone with it, but since it was a genetic disorder, we had to start mapping out the rest of us, genetically.

 The reason why I made the connection with genetic disorders and Marvel, is that both deal with mutations. Yes, one being fictional but the other not. When getting tested for Fragile X, geneticists are looking at mutations in the FMR1 gene cause fragile X syndrome. The FMR1 gene provides instructions for making a protein called FMRP. This protein helps regulate the production of other proteins and plays a role in the development of synapses, which are specialized connections between nerve cells. Synapses are critical for relaying nerve impulses. Mutations that make people who have Fragile X, that extra bit special.

Recently, my eldest son and I had our own genetic testing done to see where we would fall into the Fragile X spectrum. Luckily, for my eldest, he came back with a negative result, where I came back with a positive result, thus making me a carrier of Fragile X. I have the pre-mutation form of this disorder. While I knew that there was a very high possibility that I would be a carrier, it was what the implications of that actually meant for me. For me who fought that "Mother's Guilt" for so long when both my children were diagnosed with Autism, this was a blow that I was not prepared for. To know that I have passed something down to my child. Now, I know that I can't help genetics and that is its not my fault, that this is way things just happened, but when I look back at how my life shaped up and reading the medical material they give you when you are newly diagnosed, it feels like all the pieces have been put into place. My own learning disability, my battle with depression and anxiety and so many other things.  Its not surprising with my pre-mutation rate was so high, that I would have a male child with a full mutation and  that the Fragile X Clinic would be concerned about my risk factor for many of the Fragile X implications that happen later in life. So now I have a case number assigned to my name, that is connected to my son's. While most people would look at something like this, and be "Worry about it, when things happen." I am not that type of person. I worry about if I am going to be able to help my husband take care of our special needs children, when I am special needs person myself. That lifestyle that might have the potential seeing him struggle. While that is stuff that is beyond my control, it is still something that worry about, as we are all in this together.

I have had time to let everything sink in. It seems like our MO, that not so great news always comes right before a major holiday. I can honestly I say that I am feeling less than super human like an X-Men and more like a person having a hard time coping with something. This blog has always been about sharing how I have felt about the lifestyle I live, mostly in the hopes that my stories help others in dealing with their own lives. 

While I am still trying to learn more about the genetic aspect of this disorder, there are still things that I feel I don't know about it. Each time my son and I go to clinic, we learn more and more. The power of knowledge can be a good thing. In time, I will come to terms with the very real prospect of what it means to have Fragile X in my life, but for now, I can embrace my little X-Man and the many ways he continues to show the world just how special and super he is.

A Lament for San Bernardino.

I am trying to wrap my brain around what happen yesterday in San Bernardino. As a blogger and a voice, I feel that I need to write something.I know that not everyone is going to be on the same page as me, its the way of the world, but I feel that I need to put some thoughts down concerning the very tragic and unnecessary events of yesterday.

Every time there is a mass shooting in this country, my heart just hurts. As we scream for gun legislation, stricter screenings, better mental health programs, banning refugees because of our own fears, when in fact we need to look at ourselves, I think back to days like yesterday and Sandy Hook and ask myself, what did those people do to deserve this heartache. Nothing. They did nothing. They started their day off like any other day, thinking it was going to be the same old shit as yesterday.

The events of yesterday, especially, hurt my heart. As it was a centre that served those who have developmental delays. A place similar to the one we go to. I think back to all those times I sat in a waiting room in a place like that, waiting for testing to be done or to see a doctor or specialist, and I can only imagine what it would be like for our children who are developmentally delay what a day like yesterday would have been like for them. And that is what blows my mind and makes my heart hurt a little more. They don't understand the hatred or the violence, this world is full of. For most of them, they are content with the simple things in life. Routines, familiar faces and things. So when someone targets people such as mentally ill or developmentally delayed, you have to ask yourself why? Death because of hatred is very sad thing. NO one deserves to die because of the hatred of another person, period.

I am not trying to start an argument on gun legislation or the upheaval of the Mental health care. I am writing about those who just choose to live their lives, normally. People who all they want to do is live a nice, peaceful life, but when things like this happen, those lives either cease to exist or there is a recovery from the carnage that was. So what do we do about that? How do we honor those who's lives meant nothing to someone else?We stand up. We fight back. We tell Washington that, this is not ok. You want to change something, then fight for it.

Yesterday, hit me hard, just like Sandy Hook did. Children and people who have special needs. Two different worlds of innocence.  In a way it feels like one of my own tribe has fallen. The special needs community has always been at odds with itself, but I think the tragic events of yesterday, we have come together as a community to mourn our own. I hope that we can remember all of this the next time we are all bickering about things. Good people, who did good things to help our children and adults died yesterday and we must never forget that. 

My heart goes out to those who lost loved ones because of a mass shooting or any kind of violence driven by hatred. Death is the inevitable truth for all of us, but in the end we need to ask ourselves, how many more people will have an unnecessary death due to all of this madness before things change?