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.

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.

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!  

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.

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.

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.

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?