Tuesday, December 29, 2015

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.















Thursday, December 3, 2015

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?

Wednesday, October 28, 2015

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.


Wednesday, October 14, 2015

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.  

Sunday, October 11, 2015

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.




Monday, September 28, 2015

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.  

Tuesday, September 22, 2015

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/


Thursday, September 10, 2015

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.

Wednesday, August 26, 2015

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.
     

Monday, August 10, 2015

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".
 

Tuesday, August 4, 2015

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.


Thursday, July 23, 2015

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. 

  

Wednesday, July 8, 2015

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.

Monday, June 29, 2015

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.




Tuesday, June 2, 2015

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.

Sunday, May 17, 2015

OMG, Did my child's Neurological Disorder ruin your day? I am not sorry.

 I am not going to apologize if this sounds a bit snarky and cynical, but the fact of the matter is this, I am just tired. Like other special needs parents, I  spend an ungodly amount of time trying to educate people on what Autism is, not only that, but how to accept people who have neurological disorders. I get that the vast majority of people don't seem to care one way or another. But there are times where I just want to scream,

"Listen, Asshole, you have no idea!"

After a full month of Autism Awareness/Acceptance stuff, the general public still has no idea. And the sad part is, is that every single year, we always get to this point. Well, I get to this point. That point where I don't think that any amount of Light it Blue Campaigns, Puzzle Pieces, walks/fun runs are going to make a dent into how society views an autistic person and their caregivers. Like clockwork, it never fails, right after the month of April, we always have at least one news story that hits the national news about an autistic person. Whether it be the mistreatment of one,a child has gone missing due to elopement or a story about the bullying of an Autistic child or that the mass murderer who just gunned down a shopping mall MUST have Autism. News stories chalked full of misconceptions about Autism.  Now I get that a lot of these stories are an all year round thing, but it doesn't escape me when I notice the stories that deal with the ignorance of it all, come right after, we parents have spent a large amount of time trying to make this world a more accepting place for our children for a full month.

It never fails, that just being out in public with my children prompts people to bring out their inner asshole. The looks, the whispers, the comments. I know I have written about stuff like this before. But how much effort does it take people just to be a decent person? The answer is zero. I mean what compels someone to tell a perfect stranger that their child is not normal, or that they should try disciplining them a certain way or even flat out tell a person they should keep their child at home because they are disruption the balance of their day? I don't have enough fingers and toes to count how many times stuff like that has been said to me in regards to my children. I have gotten to the point where I feel justified in responding with snark and sarcasm.

"OMG, Did my children's neurological disorders ruin your day? Gee, that must suck. Can't say I have much sympathy for ya..."

Its the butthurt look on their face that kills me. Like they had some sort of right to stand there and judge my child and lend their "Expert" opinions on how to deal with my child's stimming.

"Oh, well I was just trying to help"

Really? So helping is telling a perfect stranger how to live? You want to help? DO me a solid, and just accept that I have a child, who is currently stimming over the bright lights, noise of the place we are at, and that he is perfectly safe and not giving a crap about your judgement. Accept and move on. That would help me out.  Or instead of pointing out the obvious, how about tell me my child is cute or has nice eyes?

Listen up, I know most of the people who read my blog, understand my mentality, but for the rest of the world, I am going let you in on a little secret.. Paying Attention? Good.

Autism is everywhere. Look around you. Look at people. Since Autism has a spectrum, you tend to see varying degrees of it. Face it, every one of us experiences the world in our own unique way. Whether it be through a sensory overload or it be our own perception of it. With the raise in number of children and adults getting diagnosed with Autism, you are going to start to see more and more people on this planet who are different from you, in every aspect and that includes the neurological plane.

SO the next time you are out in public and you see a person with Autism or any other neurological disorder. How about not staring. How about not making judgmental comments or offer unsolicited advice.  You want to be helpful? Then accept. Accept that this person can't help some of the stuff that is happening to them. But they are trying. They are trying to be part of this world, just as much as you are, but just doing it differently. They deserve that much at least. And if you can't even do that, then maybe it's you who needs to stay at home. It costs nothing to be a decent human being.


Sunday, May 10, 2015

The Tale of Two Mothers.

Two women. Two extraordinary women.This is a story about two women who found themselves having a common bond. A child. A child that one day would learn to be appreciative of the lives of these two women who had through love and never ending persistence shape who this child was going to be.

For countless of women on this planet, who have not been able to bear their own children, the first woman of this story is that of a mother who adopted. It doesn't matter what the circumstances where at the time, of why she didn't conceive, but it was the reason she wanted to be a mother to a child is what was important. There are so many children out there that need a good foundation in life. Love, support, nurturing and compassion. And to those people who make the choice to adopt, accept so many of these children into their homes and into their hearts without a second thought. The power to be a parent to someone is a strong feeling. There is a unique bond that both child and parent have. The adopted child will grow up knowing they part of a family loved them for every breath they took. For the adoptive mother, it is a chance to finally be able to have that feeling of motherhood. There is that hope and chance that the universe has given her to be someone's mother despite the odds that were given to her and her partner. She can now be part of the many joys that come from being the mother of someone and  the heartache that comes as well. But in the end it is as simple as hearing a little voice call her " Mommy".

The second woman of this story is that of story the woman gave a child up for adoption. Whatever the circumstances that were, it doesn't matter. The choice that she made to give up her child in the hopes that someone would give it a better life, is a selfless act. Some times that choice is a difficult one to make and sometimes not. But in the end, this child had the possibility to live a life that could better than the woman could provide. It does not make this woman a horrible person. It makes this woman brave. Brave in the sense, that most women who give their children up, often wonder if they had made the right choice. Most carry that worry till the day they part from this world. There are some fortunate to meet their children, as adults and find the strength, through love try to reconnect.

The Child. The child eventually grows up, wondering who gave them their eyes, colour of hair, shape of their mouth. Whether or not its from their mother's side or father's side. But aside from physical differences, the child often wants to know where they came from. There were times that those questions where often difficult to answer. One day that child would grow up to be an adult, who would be on a path of self discovery. That child was me.

Two Women.Two Mothers. Both on very different paths, have one common bond. Me. These two women are remarkable as they have embraced the situation for what it was. The mutual respect and admiration, the mother who gave another a chance at motherhood and the other who raised, loved and supported this child as her own. Both women who embody just what a mother is.

The two of you have no idea the impact you have both made in my life. Not just in parenting styles, but who I am today. Why I am who I am. The choices that both of you made so long ago, shaped me. Never for a moment did I ever feel unloved or unwanted. You have both empowered me to be the woman and mother I am today with my own children.

You both are remarkable. You both are wonderful and I am so blessed to have these two strong, amazing women in my life. Thank you. Happy Mother's Day!  



Friday, May 8, 2015

The Brotherly Bond

Its not often that I walk out of an IEP meeting feeling velkelmpt over something the teachers have said about my children. Most times its hashing out the goals and objectives for their academic future and either coming out feeling some what apprehensive about the meeting itself or worry that the goal will have to be redone in 6 months as they are not working. But this time was different. This time I walked out of that meeting elated, not because my child had met all his goals and needed new ones, but being told about how he interacts with his sister within the school.

As he sets forth to begin a new chapter in his life, as a middle school student, the talk of transition on his part is often the main topic. As he is a child that is my social butterfly, I have no worries that he will make this next step with very few complications. What I fear is how this will be for my daughter. You see, what most people don't know about these two children, is that they have a unique bond. Not just because they are close in age, but because when my daughter didn't have a voice, my eldest was there to lend her his. He has always been her protector and her biggest champion. Sure, as brothers and sisters grow, so do the emotions they have for each other. They get on each other's nerves, just like other brothers and sisters do, but at the end of the day, my son will always be there for his sister. Nothing is more further than that truth, when hearing his teachers talk about how he is with her at school. The joy in him when he sees her in the hall, guiding her and making sure she is ok or going to where she needs to be. Taking her hand and walking as if his peers weren't looking and not caring if they were. I think in a sense, he has taken it upon himself to make sure her well being is taken care of before his own. For a boy at his age, it is a very unselfish act.

I know that next year will be an interesting one for everyone. My daughter is going to have to get used to her buddy not being there. Which for her is a big deal, as she thinks her brother is the bee's knees. But in a sense it will help, hopefully, get her out of her shell a bit. Force her to find her own, as she has always relied on her older brother to break the ice in social situations.

Despite him moving on, I don't see the bonds of siblings breaking anytime soon. In time, it will grow and mature into mutual respect they will have for each other. For him it has been good to have siblings that are special needs, as it has taught him to be more open minded. Many don't get that unique lesson in life.

As for my children, they learn from each other. They see how each other deals with what life throws at them. They will be there for each other when that time is needed. But as of right now, I am enjoying seeing the bonds being made, by simply accepting someone for who they are and not caring about what the rest of the world thinks.




Wednesday, April 29, 2015

Finding Courage within herself..

As a parent there is nothing more heartwarming than seeing your children overcome something that has given your child fear. A couple of  weekends ago, my daughter, who has autism, had the privilege of attending a Girl Scout Encampment.For most girl scouts, camping isn't such a big deal, but for us, this was a huge step for my daughter, as she had never been overnight camping with her brownie troop before. Before we left, I had braced myself with the possibility that this weekend might either be a good experience or a not so good experience, but whatever the outcome, I was to be proud of my daughter for wanting to step out of her comfort zone and try something new. This weekend, my daughter blew me away as well as the support and love her troop had for her.

This weekend was a weekend of conquering fears. Not just for her, but for myself. In a way I was afraid of how she would do and if and when we had a meltdown, just how she was going to be seen by the rest of the girls.I will state that this girl proved me wrong. And it was one of those times, that I liked being proved wrong. Not only did she not have a meltdown, but when she knew herself that she needed to clock out for a while, she did it on her own terms. Calmly and collectively. And when her troop, saw that she was getting overwhelmed, they helped her out. For an autistic, that normally has a hard time with social cues and relation to certain situations, this little girl proved not only to world, but to herself, that she can among her peers, without worrying. With all that being said, there were times, that she doubted herself, thinking that she couldn't so something, because of this fear she had within herself. As I saw the battle going on within her head, of whether or not to participate or not, I stood back and let her figure it out for herself. I think that was the best thing I could have done for her.

During camp, we had work stations that we went to as a troop. Rock Climbing, Quilting, Kayaking and Archery.Our Saturday was shaping up to be busy day. I already knew that my daughter was a bit discombobulated, with her routine being out of whack. Our first station was rock climbing. When we approached the wall, I could see in my daughter's eyes a sense of dread. Her first response was "No, Momma, No" I told her that, if she didn't want to do it, that was fine, but we will stand and support our troopmates as they climbed the wall. She sat back and watched all her troopmates get suited up to climb. Every so often she would wander over to the wall and look up and then shy away from it. She watched as girl after girl climbed up and rang the bell at the top of wall. But it wasn't until the instructor, who was this woman, that drove a Harley into camp and looked as though she has enjoyed every facet life could offer,  came over to ask if my daughter wanted to climb. I explained that she was scared and that we were a little out of our norm. The instructor got down to my daughter's level and told her, it was ok to be scared and that if she just wanted to touch the wall, that would be fine. In that spit second, my daughter, who was tucked up into my hip, decided, that Yes, in fact she wanted to try climbing the wall. So the instructor suited her up and put the helmet on my daughter's head. As my daughter got closer to the wall, I could see her shaking a little, but before I could step in, the instructor got down on her knee and quietly told my daughter, " Its ok. If you just want to stand next to the wall, its ok. If you want to touch the wall, its ok. And if you want to climb the wall, its ok. Why? Because all of those things are things you didn't do yesterday and things you can say you did today." Internally, my heart was singing. Watching this rough, spitfire of a woman, talking to my daughter in a way that was gentle and supporting. My daughter tells her to hook her up to the belaying line, and as my daughter took the first step up, she just kept on going. As her other troopmates,who where standing below her, cheering her on. Supporting her. She didn't get up to the top to ring the bell, but she did get half up the wall and then came down. When her feet hit the ground with all of the grace of a cat, the instructor unhooked the belaying line and gave my daughter a big hug. She told my daughter, that no matter how many girls come to climb the wall, my daughter was going to be her rockstar for the day. As my daughter went off to take her gear off, I took the instructor aside, and told just how much this meant her and myself. I explained that my daughter was autistic. And her reply was this. "Don't ever let that stop her from things." I could not stop the tears from escaping from my eyes.

For the rest of the day, it didn't matter what else we had going on. Both my daughter and I felt that we could conquer anything. She went on to sew a quilting square, just like her Amah. She tried her hand at Kayaking and Archery, without an element of fear. At the end of the day, she even wanted to sit at a campfire for as long as she could bear it, with her troopmates. We came back from this camping trip, feeling renewed. I think she surprised herself, when she put her own guard down, and she surprised me in doing just that. Both us came back from Encampment, learning a little bit more about each other, thanks the support and kindness of other people, but more so for because of both us putting aside the fear we had going into this adventure.

Sunday, April 26, 2015

One Diagnosis, Two Diagnoses, Three Diagnoses, FOUR!

There is a point when you are sitting in a doctor's office, listening to them go over test results that makes you think that you what is afflicting your child is a amoeba of sorts. One diagnosis turns into two, then three and then four.. and it just keeps on going. Then finally the doctor will have to write down the list of things that need attention. I came to this realization when I was sitting at my son's IEP meeting last month and it hit me, as soon as they had changed his IEP from Autism to Multiple diagnoses. Seeing it there printed, floored me.

As most of us parents in the Autism Community know, there are several things that are put on the table when we get the Autism diagnosis. Things like Global Delay, Expressive and Receptive Speech Delay, Low muscle tone.. I could go on but you all understand what I am talking about. And with all of those comes the amount of services this person will need to help them along. Special Educations, OT,PT, Speech and Language and ABA. A lot of these are just within the Autism spectrum. Which makes Autism look like an amoeba of a diagnosis. So much to remember. So what happens when splits into more little amoebas? You have entered the realm of multiple diagnoses.

Our experiences are with a genetic disorder, while others might not be. Currently, it is a maze just to navigate through the different specialists that need to be seen. Not to mention the individual testing that each of those specialists want to do. Now the game just seems more complex. More ducks that need to lined up for things to happen. I often go back to when it was just simpler with just the Pediatric Developmental, ABA therapist and the Speech therapist. Now that our team has grown, I am somewhat lost without my whiteboard flow chart of doctors and specialists. How to see when and where to at what time. At the beginning of all this, I will admit that I was lost. Lost like the Land of the Lost, with the sleestaks and everything. But in the past couple of months, things started to come together, slowly, but they are getting there.

I am finding though, that multiple diagnoses throw our insurance for the same loop we first got thrown into. The current frustration is referrals. And for the insurance to try and keep up with amount of Doctors ordering things is like watching a toddler trying to do a 100 piece puzzle.  Trying to put what where and  what authorization code goes to who. As a parent, who just wants things to get done, so we can move on, it is extremely frustrating when people don't want to do the job they are supposed to do. I wasn't the one that took the course in insurance codes and accounting. I am just the person who has a loved one that needs medical care and attention. I can't tell you how many times I have been asked, "Well which diagnosis does he fall under?" Um.. Well.. All of them. I guess he won the lottery. But this isn't a pick one out of the hat kind of deal. This is a person. A breathing, functional person that requires just a little bit more attention than your average person. A person who just happens to have multiple things going on within in them.

To say that living with someone that has multiple things going on is easy would be a lie. Its a challenge and that is the truth. While my son is still young, trying to get him as much help as we possibly can, is our goal. We want him to be able to function as best he can when he hits adulthood, as he will be an adult with multiple diagnoses. An adult with multiple disabilities.

So even though it seems daunting right now when they are children, in the long run, what you are setting now, will benefit them when they are grown up. A system that will help them navigate through their multiple diagnoses.


Tuesday, April 21, 2015

How the Girl Scouts helped my Autistic Daughter.

This past weekend my daughter and I participated in our local Girl Scout Encampment. It was a weekend full of activities for our local troops and a chance to meet other girls outside our own troop. For us, it was the first time my daughter, who has autism had ever been camping overnight with her troop. She has only been with her troop for a short while, but the group of girls that are in this troop are ones that have gone to school with my daughter. So they are aware in their own way, that she is a special little girl. They don't treat her any different and they treated her with the same amount of respect as they would any other girl within the troop. I wasn't going to write about this, but listening to my daughter talk non stop about her weekend with others who didn't go, it made me realize just how much Girl Scouts had impacted her and our lives.

Anyone who knows my daughter, knows that its the simple things that make her smile. Yes, she has her quirks, but for the most part she is a very simple and easy going child. She is also a child that so desperately wants to be part of something. Included in activities. It could be anything from playing with dolls to being invited to a birthday party. For the longest time we tried to find something that would be beneficial to her and her nature. As she looks at the things that the other girls do, like dancing and cheer leading, often wants to do the same. As her parent, I know what her limits are and as much as I don't want her to excluded from things or not try something, I know that there are certain venues, that are either just too competitive for her or just too much going on. So I figured that Girl Scouts was a good way to go, as I had seen my eldest do well with the Boy Scouts. I wanted something that would help her out socially but also give her a sense of friendship and kinship. It also gave her something to feel accomplished about, when getting badges.

Now I get that not all troops are created equal. With everything there is the good, the bad and the very bad. We are very fortunate to have a troop, that is very accepting. They recognize that my daughter has some difficulties with certain things, but with that they help her get through those tougher moments. And as a parent, watching this makes my heart velklempt a little. For any parent of a special needs child, all we want is for our children to be respected and accepted, regardless of what makes our child special needs. In an age where the number of bullying cases are on the raise, it is nice to have children rally around those who need an extra bit of love and support. It is an important lesson I think for children to be around others, who view the world differently, as everyone can learn something from each other.

During our weekend at the Encampment, my daughter stepped out of her comfort zone. Yeah, we had some times where there was an overload of the senses for her. But over all, this weekend was the weekend of firsts for her. She did activities, that I, as a parent, couldn't even imagine her doing. It was a huge step for her, for which she handled herself remarkably well. From Rock Climbing to learning how to shoot a bow properly. We went from baby steps to giant steps. She learned how to work as a team to get something done, from cooking breakfast to cleaning up our campsite. Social skills I don't think she realized she was learning.

Now that my husband is home from deployment, I can be more active with her, just as my mother was when I was in Girl Guides( That is our Girl Scouts, in Canada). Out of all the stuff I did back in my youth, Girl Guides, was the one thing that I felt accomplished in and have the fondest memories in.  I loved the outdoors. I loved the camping. I loved the camaraderie of my troop.  I want that for my daughter. I want her to have that feeling and have the fond memories that she will remember.  There is something to be said about the sense of kinship of a Girl Scout Troop.

So for my autistic little girl, Girl Scouts has made a positive impact on her. In a way, it has helped her come out of her bubble. Let her experience things, that she wouldn't normally do and show her that there are people out there that, just because she has something different from them, they will still respect her and support her in the best way they can. They see her for who she is, and still want to be her friend, which at the end of the day, for her is the most important thing.


Me: What was your favorite thing about this weekend?

Little Miss: Just being with my friends.

Need I say more?

Wednesday, April 15, 2015

The Power of a Word..Why the R-word needs go.

Every word within the English language has a meaning and a purpose. Whether it be a word that describes, a word that pronounces or a word that is used to help make a sentence flow. Every single word has purpose. Now I am not going to sit here and give you all a lesson on pronouns, nouns, verbs and adjectives. But I am going to sit here and write about the power behind certain words within our language that have more meaning behind them, considering the power and emotion that is associated with them.

For the past couple of weeks, since Autism Acceptance Month has started, I have read and overheard different conversations concerning the word "Retard". For many people it is just a word. A word that started out as a medical term to describe the delay in something. It was more associated with the delay in mental development. Mental Retardation. Back in the age of my parents and grandparents, this was not considered an insult. It was just a way to describe the mental capacity of someone. But just as Intellectually Disabled stung for me, I am willing to bet that hearing those words back in the day stung just as much. Words and terms are always going to evolve, as society evolves and changes. The question that has to be asked is, is it right to use this word so freely? Using in the contexts of " Oh that is so retarded?" or " Don't be such a retard!" The answer lies within the special needs community. If you ask the vast majority of us, we will most strongly say that, No, its not ok to freely use the word "Retard". As it is right up there with words like " Nigger" or "Faggot" Words that you would never call someone.

 Now I get that most of the English language is built off of dialects of old. Latin, being one of them. But words have essentially evolved, just as society has. For those who still continue to use the "Nigger" to describe an African American or a "Faggot" to describe those who are homosexual, have not evolved. Its the same for those who use the word "Retard" When you start to get past the medical aspect of that word, and use it as a source of an insult or in a derogatory matter, you are making light of a disability. Poking fun of something, that someone can't help about themselves. That is hurtful.

SO while you might think that saying "Retard" isn't a big deal to you, how would you feel if someone took something that is a part of you  and something that can't be fixed or changed and made it a running joke? I bet you, that you wouldn't find it even remotely funny. As that is the trick to humans, we don't like it when our imperfections or things we can't change about ourselves are pointed out and ridiculed.When it comes down it, your self esteem gets slapped. And you hurt. So why is it any different for those who do have a disability they can't help having?

In some of the conversations, that I have had to hear on this subject, the main reasoning for not stopping the use of words that hurt, is this

" Only you can put the power into the words and get offended by it"

There is some truth to that. Yeah you are right. A person can personally take offense to the use of certain words. But the real power is the emotion behind the word and the person saying it. I can choose to ignore insults towards my children, but I can always choose to take a stand against the power that is propelling that word.  So when a person uses the word "Retard" in front of me, it makes me wonder if it is ignorance or if that person just plain forgot. But people wouldn't forget with any of the other words that are derogatory. So with the social attitudes changing in regards to words, so should people.

I guess what I am asking is this, be aware of the choice of words. I know that it seems you can't talk about the wind changing direction without someone getting offended. But here's the deal. If you don't mean it, then don't say it. If you know it is not a nice word, don't use it. Because I will not feel sorry for those who will get an earful or more so from those who have to live with the stigma that "Retard" carries, for the rest of their lives.