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?

8 things I have learned from being a Special Needs Parent.

I have been a parent now for almost 12 years now and in that time we have had our moments of spectacular parenting and then our not so finest parenting moments. Every parent has those. For me adding the element of special needs has definitely taught me some lessons I couldn't have learned from a parenting book or the sage advice from those of a generation or two behind me, as things are different, but from simply living my life and growing from my experiences. Life ,itself is a learning curve.

These are just things that I have found that get me through my days. If there is anything that resonates with you, then awesome. By no means is this a gospel according to me.You always want to do what is in your best interest. For me, I like to hear what has worked for other people, as sometimes you can get good ideas for something that you are stuck with.

1: Its ok to be angry. Seriously. You are fully entitled to be angry at a situation or a person. You are allowed to be angry with what has been thrown at you.  The trick to anger is all how you deal with it. I don't think I have to state that there are certain ways to express anger without hurting yourself or others in the process. Talking is always a helpful, even if it is with yourself. Writing stuff down is also a good way to help vent (I write a lot, but a good percentage of my writings, I don't blog) Getting something off your mind can be a way to clear it, especially when you are angry about something.

2: Be a fighter. This is coming from a person who gets hives when dealing with any kind of confrontation. I didn't know I had voice until I had children with special needs. Being an advocate and a champion for someone will bring out your inner fighter. Pretty soon you will find that fighting spirit not only for your loved ones, but for yourself. There is nothing wrong with standing your ground when you feel it has been trampled on.

3: Remember to laugh. There are going to be things happening in your day that are going to suck every ounce of happiness out of you. I am not going even try to sugar coat that, but you have to learn to laugh and or find the humor in things. Yeah you might have a day where your sensory magnified child doesn't want to wear a stitch of clothes and are trying to shred every last article of clothing off and the last thing you need is the disapproving eye from someone who doesn't get it. I always say they are going to be the next Magic Mike or that we are naked under our clothes. Or if your child flaps excitedly over something and you get looks, " Yeah don't mind him, he is just spreading his wings, just watch him soar!"Sometimes it lightens the situation and sometimes it doesn't, but at least you were able to have chuckle. Sarcasm and wit can be your best weapon with those who are ignorant and don't get it.

4: Jealousy and Envy are ok to feel. Its ok for you to feel a bit sad when faced with what could be your life, if you didn't have the special needs component. A lot of us out there at times dream of a life where we only had to deal with not so complicated child problems. And we get frustrated, when trying to explain our life stories and problems to those who won't understand. I would love to see my 5 year old out playing with other 5 years at a park somewhere, but that isn't my reality. And to be honest, there are times when I do get jealous when others talk about all the milestones their NT children are doing, while I am over here trying to get medicine into my child so he won't have seizures.

5: Forgive yourself. Its a tough one, I know. You are going to make mistakes as you are only human after all. There is no such thing as a perfect human being. Some may think they are, but really they are not. Taking care of a person who requires a lot of love and support, drains you, both emotionally and physically, so you are bound to not be at your best all the time. Don't be too hard on yourself if you didn't get all the housework done, because you were up half the night with your child that has sleep issues or if you are bit scatterbrained as you have a lot on your plate.Keeping track of appointments to specialists and doctors and meetings with teachers, can be mind boggling and unless you keep a running flow chart of who is who, there going to be days where things will get mixed up. Dust yourself off, tell yourself you got this and push forward. You do the best you can do with what you got. Guilt is a big thing for a special needs parent. As most times we are blaming ourselves for our children needing extra love and support. The blame game we play with ourselves is a destructive one, which is why we need to forgive ourselves.

6: Keep an open mind. This goes with every aspect of your life. As much as it pains you sometimes, you have to remember that everyone is on their own path. Sometimes that path is good one, and sometimes its not. You can't expect everyone to agree with you or follow your example. Also think about that something might work for you, but won't necessarily work for them. This also helps when you are dealing with people are ignorant. Just as they seem to be close minded about what acceptance means, you have to learn to accept the fact that there are people out there that just don't care or don't want to educate themselves. That is on them, not you. Nothing you will say or do will change their minds about correcting themselves. And you have to keep an open mind about that.

7: Do not take the judgement of others as gospel. Its hard when every time you walk out your front door, that you are being constantly judged by those who have no idea what your life entails. Its hard not to get upset at the remarks and or stares as you are trying to get on with your daily life. Realize that some are just never going to get it and it doesn't matter how much information is out there, they are just never going to get it. Remember you are on your own path. You are doing things that are in the best interest of your family, not theirs. So what if you have an 8 year old who has oral sensory issues, and it requires them to have a chewy.Or you 10 year old who is having toileting issues.  At least your child is happy and healthy and knows that they are loved and supported.

8: Taking care of yourself. This is the most important one. In most cases you are the one that keeps everything together. The glue so to speak. And if you go down, there is a break in your system that works for you. Take care of yourself both from a mental stand point and a physical one. It's hard to clear your mind after a day of full on chaos and ignorance. Sometimes you might need some help making sure you are mentally healthy. There is no shame in that. Taking care of yourself also means trying to find a moment in the chaos that is just for you. Time to unwind, do something just for you. You need those moments, as those are the moments you use to centre yourself. Sometimes it takes a while to find those moments, but in the end when you can finally take a breather after a chaotic day, you will feel better. It's hard sometimes and it doesn't always have to be a long period of time. just long enough for you to realize you are a strong person and you can get through this.

 I know there is more, but these are the most important things that I have learned. Again everyone is on their own path and the things learned will be different. In the end. we can all say that we have learn something. Things about ourselves, other people and the world around us. The trick is this, move forward from your experiences. The good, the bad and the ugly. You will be surprised just how much you can grow as a decent human being.

Fake Awareness Month, What colour should I wear today?

Every month it seems there is a cause to be spotlighted for  the social media to take charge and run with. Gimmicks that are supposed to raise awareness for a certain disease or disorder. Things that are eye catching or heart wrenching. Everything from selfies and hashtags to idiotic days like "No Bra Day" When you think about it, is having a disease or a disorder gimmicky? Or the new latest thing?

The answer is no.

The answer is always going to be no. I,once upon a time bought into the whole raise awareness with copious amounts of ribbons and puzzle pieces in a month thing, back when my first
ASD child was diagnosed. But as the years went by, no one seem to care about the struggle I had with getting services, good schooling and medical attention for my child. It didn't matter how many ribbons I wore, people were still and always going to be ignorant to the fact that my child was different. In time I put my puzzle piece decorations and jewelry away and become more of voice for my children, instead of someone that support something only when it is the latest and new thing to get serious about for longer than a hot minute.

I think that is why I have an issue when certain months come around or when it is decided to something gimmicky for a cause. I understand that most organizations are trying to make it fun to raise awareness for their cause, but in reality, living with a disease or a disorder isn't fun. It isn't fun because there is this societal stigma that normally follows you around. October is the prime example of false awareness. You have so many things that October is the cause month for. Breast Cancer, Domestic Abuse, Mental Health just to name a few. Now you could wear the colours of the rainbow in support or participate in something ridiculous like selfie campaigns or not wearing your bra  for a day, but who is that helping? Certainly not the millions of women dying of breast cancer who can't get low cost mammograms because places that provide that have been shut down, or helping the homeless vet who is struggling with PTSD and a host of other mental illness because all those programs to help them be mentally fit have been scrapped thanks to budget cuts.Or how about that child that most will look at through the veil of judgement?  Maybe its the cynic in me, but I don't think any amount false awareness is going to help.

If you want to support something, then support it. Don't slap a puzzle piece in your window or wear a pink tee shirt or take a pic with a hashtag and call it a day. People who depend on the actual support don't need a gimmick. Some need the funding to find a cure. Some need the support of a community and some just need to know that they are not alone when they call for help. So if you want to support Breast Cancer awareness, help out at Women's Health Clinic. If you want to help out Mental illness,be a friend to someone you know is going through a rough patch or even better, support something that helps the homeless, as a good percentage of them are mentally ill. Domestic Abuse, donate to a shelter. Autism Acceptance, Get to know a family who has special needs loved ones. There are so many other, more constructive things you could be doing to help a cause, than to participate in idiotic gimmicks.

In the end, the people who live with a disease or disorder or the ones who are fighting a damn good battle need to know that they are worth more that you simply taking a pic or taking your bra off. Be proactive in your support, that is what is appreciated more than anything else.  

The 2 am wake up call...

Its not a big secret that caregivers who have loved ones with special needs don't always get the best night's sleep and most of the time we are the ones who look like extras from the Walking Dead. We try to ramble through our day with our head still in the game, thanks in part to large quantities of caffeine. Its no wonder that most of us are either on some sort of anti depressant and or sleep aid just to get those precious moments of a snoozefest.

For me, I have a child, that thanks to a seizure disorder related to everything else that is going on with him, doesn't sleep a full night. The medication that we are currently trying out, I think amps him up to this level of hyperactivity that rivals the Energizer Bunny in the very early morning hours. As we are still in the infancy of this disorder and the medications that work and ones that don't, the lack of sleep is just one more thing to be added. Before we started on this new journey, his sleep was still very erratic, thanks to those seizures he was having in his sleep,but now we have reached a whole new level of middle of the night hyperactivity.

Maybe because I am so tired and the thought of me trying to drag myself to work barely conscious, my 2 am wake up call made me a little melancholy. I sat at the edge of my son's bed, watching flap away and vibrate, it made me realize just how much this little person has going on in his life and here I am worried about me and my lack of sleep. Don't get me wrong, my well being is just as important, but as an adult, I can handle and navigate what is going to be thrown at me, while he can't.

He can't for so many reasons other than being a child. Most children are able to communicate what is bothering them, what makes them happy or sad, angry or upset, but a non verbal child, who's senses are on overload cannot. In my tired haze, I become more aware of just want all of this means for this child, at this current moment in time. He is a child that can't relax. He can't tell his brain to start preparing his body for shut down mode, as his mind is preoccupied with other things, like his sensory issues. In a way its like a radio or TV that is stuck on the same channel and sometimes there is a break in the signal(seizures) and we go back to our regularly scheduled program of verbal and physical stimming.

Sadly a 2 am wake up call is a wake call for so many things. Just as I am physically exhausted. my mind as well is thinking about things. Important things. Revelations about how my child's life actually is and the sad part is, is there are very people out there, who will ever have the pleasure of what these 2 am wake up calls are actually like. Just as I am thinking about him, I am also thinking about everything I have to do as a parent to make sure this child gets the proper services he needs in order to help him deal with all of these aspects of his life. That worry that maybe I will not succeed in my job as  parent to get all of those things.

I type this as I am finishing up my 5th cup of Coffee, trying desperately to get my thoughts down. as I know I am not the only parent that has sat in this chair and drank that much coffee having the same feelings I am expressing. I know this will not be the only 2 am wake up call I am going to have, there will be others. And those will too will come in a haze of exhaustion and copious amounts of coffee. Its called being a parent. Being a parent of a special needs child.

For now, I must go and make my 6th cup of coffee, drown my eyeballs in it, take all that I have  discussed and try to get to work.

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/