Wednesday, April 30, 2014

The Last Day of April...

So its the last day of April and what have we learned? Have we spread awareness, far and wide? Did the puzzle pieces and sea of blue make their mark?

I ask these questions on the last day of Autism Awareness Month, as it makes me wonder if society and the community have learned anything. For us the caregivers and the people that live with Autism, it is never just contained to just one month. It is a 365 days, 12 months, 7 days a week and a 24 hr lifestyle.

For some of us our journey is a tough one. Sometimes that journey challenges us in ways that seem cruel. Cruel in the sense that when we look for support, we are faced with ignorance and skepticism.  As caregivers, even within our own community, we sometimes seen as the enemy, when all we want to do is just help our loved ones. For those of us who have gotten to the point of no return, there is ridicule and vilification.

For those who have Autism, does the world truly accept your uniqueness? If it does, why are we still faced with the extreme amount of bullying? People will still look at you like you are not part of their world, even though you are living, breathing human being. People will still continue to use the word "Retard" as an insult, never knowing just what the word actually means. You will always be faced with people saying " Hey you don't look like you have Autism", not realizing that Autism is one of "those" invisible disorders.

So in the past month of promoting Autism Awareness, I ask, just how aware are we? I look back at all the months of April I have supported the cause to bring Autism onto the front stage since my children were diagnosed. Sure the first few, there was a lot of energy put into making sure the puzzle pieces were everywhere and that I had the colour blue lighting up house. But when I began to realize that even with in the Autism Community, we weren't as accepting and supportive, it made me wonder, "Why bother?" I thought if we can't get ourselves in order, then what's the point?

Then it hit me, I don't do this for me. This is not to bring awareness for my plight or my journey. I do this for my children, because as a parent it is my duty to be in my children's corners. As they didn't ask to live on this earth differently from you and I. They are just doing what they must in order to survive. Sometimes they just need a little help doing that.

If I thought for a second that plastering puzzle pieces everywhere and lighting everything I own blue would even make a dent into what society thought about my children or how it treated them, my house would be extremely colourful. Not just for one month.

There is the trick, even as the number of children that are getting diagnosed is raising, it is apparent that society is accepting that change. We still have the ignorance. We still have the misconceptions.

So on the last day of April, as Autism Awareness Month has wound down, I ask just how much has society learned? And just how accepting is it going to be when the number continues to raise and Autism affects those who didn't think was it possible for it happen to them? Will we, the seasoned caregivers, be there to support them as they process just what it is to be a person who loves and cares for our loved ones? Or will we shun them when they ask questions, trying to learn from us, the experienced?

Ask yourself, on this last day of April, just what did you learn?

Friday, April 25, 2014

The soft side of Autism...

What do you think of when you hear someone say Autism? Is it Dustin Hoffman and Tom Cruise? Or is it Jenny McCarthy? Or is it all those news reports that tell you about families that have struggled to the point of no return? Or do you have sympathy and think to ask "Gosh, I don't know how you do it?"

For me it when I hear the word Autism spoken, I think of my children. I think of all those who are in my life that have it. I think about how different each and every one of those kids are. You see, people with Autism are living, breathing human beings just like you and I. There are so many misconceptions when it comes to the wonderful world of Autism. People think that if they have read something or met one person with Autism, they know all about what it is. Sadly, it doesn't work that way. For us caregivers, it would be nice if the world could see what we see in our loved ones. But the world sees misconceptions.

The type of Autism that is my world is actually two types. I have two very distinctly different kinds of Autism living in my house. Sure they share a diagnosis, but they are uniquely different. What this means for me, is that I have to gear myself for different possibilities or scenarios for two children. One bolts, the other doesn't. One thrives on loud, illuminated stimuli, and the other wants nothing to do with loud and lit up. One eats everything on their plate, where the other only eats foods that are white. One is calm and the other is whirlwind that is never ending. You get the picture.

So when I ask, "What do you think of when you hear someone say Autism?", I want you to expand what you thought of. I want you to look past those stereotypes. I want you to look past the diagnosis. What I want you do is to see people for who they are. Accept them and the ones that love them. I want you to see the Soft side of Autism. That side that is full of love and compassion. That side that is the child who wants to cuddle and give hugs and kisses. The side of Autism that just wants friends and people who support them. That soft side of Autism that we, the caregivers, remember and cherish when times are tough. When people are giving us a hard time as we try to maintain a meltdown and the general public doesn't understand. That softer side that we hold so dear, when people down us for how we deal with our children.

The soft side of Autism are those children who strive to be part of this world and it's societies. The soft side of Autism is those who will love and support these amazing people. The soft side of Autism is the side we wish the world would see. 

Saturday, April 19, 2014

The Scars that we bare...

Everyone has scars. Everyone. Emotional scars. Physical scars. Some have a harder time dealing with them than others. Some people are better at hiding them then others. For me, there are some scars that I have carried that are evident and some that are hidden. And for this moment, I am willing to let the world see those scars I have kept private.

You see, the scars I carry are those of a once battered person.You wouldn't know that from looking at me. That I was this once beaten down shell of a person. Broken. 

Like most children out there, I was one that was picked on quite a lot. I had bucked teeth, metal in my mouth and weird hair. Not much was put on self esteem or self confidence at this age. I always wanted to be part of something. Tried to please everyone, even when it backfired. Little did I know that how I was treated and how I saw myself would dictate who I was when I reached young adulthood.

 Even in my teens, I still had that mentality of wanting to just fit in. Sure I went through the normal teenage strife of boyfriends, parent issues and trying to do well in school. I tried, but emotionally I was beat down. It was then when I was 19, I met him. The one that would change my existence on this earth.   

He was older and in college. And boy did I fall hard for this man. It was the last year of high school. I pretty much threw away my grade 12th year for him. And when you are at this age, any attention that is thrown at you, you will grasp at like a drug. At the time, life at home wasn't the best, so he was my out. As soon as I got my high school diploma, I had kissed my hometown goodbye and left with the love of my life to the big city. For me, at this point life was good. 

All relationships have their honeymoon phase. You are blind to the faults of your partner, I overlooked certain behaviors as I thought they were cute.  I enrolled in College and started working part time at a coffee shop. I was making friends and learning stuff that interested me. I was blind to the gradual controlling nature of the man I loved. I didn't see the possessiveness and the jealously. He was jealous of the time I spent at school and work. As it was time I wasn't with him. I would try to talk to him and reassure him that he was the most important thing to me. Sometimes that would work and sometimes it wouldn't.

 I graduated with honors. The night of my graduation, he couldn't bring himself to be happy for me. The night that was supposed to be mine, turned into a night that was all about him. This was the first time that it had gotten physical. I had never been hit in my life. Ever. Sadly this was just the beginning. 

It didn't stop. The emotional abuse beat me down to the point where it was ok in my mind that physical abuse was all part of what love should be. I never had to cover my bruises with makeup as they were all under my clothes. I would plaster a smile on my face and pretend I was a happy person, when inside I was this broken down person. 

I spent 2 and half years living like this. I can't tell you what gave me the courage to get out of this relationship. Maybe it was my own will power or maybe it was those who finally saw the pain in my eyes. What ever it was, I am thankful it. 

It has been 15 years since. 15 years that I have struggled with those scars. 15 years of various therapy. 15 years of loved ones picking up the pieces and trying to put me back together again. It wasn't until I met my husband, who to his own credit, taught me that I am worth something. 

I write this, as I hope that my story will help those out there that who are broken and beaten down. Domestic abuse isn't just physical. Emotional abuse is just as harmful to a person as it will break you down to the point where the physical abuse will seem ok. 

Please if you think you are in a abusive situation, seek help. You are not alone. You are worth it. You are somebody that counts and deserves a life of happiness and love. 

Wednesday, April 16, 2014

Grandparent's love

As I sit down to write this, I am listening to my father talking with my daughter. They are sitting down sharing some toast and jam. The conversation is going between talking about her dolls and the want to go to the park. As I hear the familiar 20 questions that are always asked, my father is taking it in strides. He is doing his best to make sure that her questions are answered, even if they are the same questions over and over again.

For the past couple of weeks I have been privy to seeing just what it means to be a Special Needs Grandparent. There have been so many fantastic, touching moments that have happened between watching my children interact with their grandparents. The moments of patience, understanding and taking it all in, in what it means to have someone in your life that is special needs.

I think that it is sometimes hard for family members, who are not always with a special needs family,  will only see a fraction of what the parents have to go through on a daily basis. Sometimes I think it is hard for a Grandparent to take a step back and see the different parenting style it takes to parent a special needs child. As parenting styles and "Rules" have changed since we were children. But when you have the family members that accept, love and support your children, it is a very special bond they will have with your children that are uniquely theirs.

From watching my father sit patiently with my son in his lap, explaining the TV show they are watching. Talking calmly and quietly into his ear, while massaging his joints for joint pressure, as he knows that will help calm this wild child down. From the trips to the park, where Amah is perfectly content in pushing a swing, as that is only thing he wants to do. Listening with keen interest was my daughter talks about everything, repeats it and then asks a bizillion questions. Calming her down when its raining so hard and they know the sound bothers her. Taking their small little hands with in theirs as they walk down the sidewalk.

Its all those things that will build the best memories. Memories I hope that my children will hold on to, when their grandparents are long gone from this earth. It is memories like these ones, that keep my grandparent's spirits with me. For children it doesn't take much. A little love, some understanding and you will have created a bond so strong with them, that they will remember and cherish you.

Tuesday, April 15, 2014



To feel empathy for a fellow human being and the want to help. In a world that is take, take, take, all the time, compassion seems to be lost. So I ask this question, what would you do to help a fellow human being?

Would you help a person out if you know they are of a different faith from you? Doesn’t matter if they don’t have the same believe system than you, if you saw them struggling, would you help them? Would you put your own thoughts and opinions aside to help?

Would you help a person out if they have a different skin colour than you own?

Would you help a family in need even if they lived a different lifestyle than you own?

Would you teach your children that everyone is created equal? And that we are all unique in our special way? Would you teach them to respect themselves and others?

Living in a Special Needs World, you tend to have more compassion for people. This is just my opinion. I find that since we are striving for one common thing, acceptance, we tend to be more open to other people. For me, the way someone lives their life, practices religion or who they look isn’t an issue for me. As I am trying to make sure that my children and all of their abilities are accepted. And that takes compassion. The reason why I say this, is how can you expect people to be compassionate to your cause, if you, yourself don’t follow that edict. Those questions I put forth above, are ones that we all need to ask ourselves, when we think about how we want our children to be treated.

Hate is a learned idea. You learn things like love and hate at an early age. You can have your own thoughts on stuff. Like hating brussels sprouts or the weather. But to hate someone who is different from you and lack the basic compassion for someone because you don’t understand them is a learned thing. One of the things about being a parent is to teach our children right from wrong. We need to have a generation that is accepting. Accepting of those who around us. We need to teach compassion. We need teach our children that it’s ok to help fellow human beings, despite differences. If we want them to understand empathy for others, we must show them. If we want the world around us to show us compassion and empathy to our causes, it must be taught and learned.

I, myself, try to keep an open mind. Passing judgment is part of being human. We all do it. The thing to remember is, if you pass judgment solely on the basis of hate and fear, maybe you need to take a step back. Educate yourself. Let go of that fear of the unknown. 

Thursday, April 10, 2014

“What is this thing called Autism and why do I have it?”

“What is this thing called Autism and why do I have it?”

That very question haunts me. As I know that one day that question will be asked. I am not afraid of the answering that question, but more of the response to the answer I will give. How do you talk to your child about a disorder in terms they are going to understand? Most children are so unaware of things like disorders and diseases. In their own minds, it means that someone is sick. There is never a time where I want my children to think they are “Sick” with something. As I don’t see Autism as a sickness.

As a parent, we do everything in our power to make sure that our children learn that they all have differences. That a uniqueness about someone is a good thing. We try and teach them to be accepting of others. But how do we make them accepting of themselves? I know in my heart that the day will come when I will have to sit down and have a conversation about what Autism is. I want my children to know that they are not sick, that Autism is something that is always going to be a part of them, just like being nearsightedness is to some people. I want them to know just because they have this, doesn’t mean that they can’t live a fulfilling life. I don’t want them to think that it’s going to hold them back. But I do know that the road ahead of them is going to have it challenges, but I know that I will try to instill in them that they are fighters. To never stop fighting for themselves.

With society being the way it is, always pointing out the imperfections of us all, it’s going to be a tough world to try to convince that they have something special to offer. The trick is, is that most children out there that are autistic, just want to be accepted. They want to be loved and supported by their peers and family. Most of them don’t need to have their differences pointed out.

So when my child comes to me and asks, “What is this thing called Autism and why do I have it? My response will be this.

“You are unique to this world just as everyone else is. You have qualities to offer this world that are worthy. Autism is something makes you, you. It is what gives you your own perspective of this planet. You never had to apologize for being who you are. Yes, you have autism and yes its disorder. But it’s not something that is going to ultimately define who you are. You are your own person that deserves respect just like everyone else.”

Tuesday, April 1, 2014

Military Child and Autism Aware....

I look at the clock and it reads 4:00am. The familiar screech of my autistic four year that vibrates through the house. I grope the other side of bed in search of the person who is normally there, but I find an empty space. I get up from my warm, comfortable bed, and pad down the child’s bedroom. There I find a child jumping on his bed, screeching at the top of his lungs, obsessing over the ceiling fan. I am praying to God that my neighbours can’t hear him through the walls. I give it my best effort to soothe this child back to sleep even if it is just for two hours. In two hours, I will have a fight on my hands to get two other children dressed, fed and ready for school. Thus begins my day.

In my caffeine induced haze, it dawns on me that today is the beginning of April. For us it’s the start of Autism Awareness and the Month of the Military Child. I chuckle to myself when the thought that both those things are my children. Autism and Military Children. I don’t want to say that they got double whammied, but in this whole month, we are supposed to bring awareness and recognition to both worlds. I know that like many military children out there, my children are no exception. In fact they part of a whole new Category of Special Needs Military Children.

Just like the average Military Child (I refuse to call them Military Brats, as they are far from bratty), special needs military children have to deal with everything that comes with the lifestyle. The deployments, the moving every three years, new schools, new houses and saying goodbye. But behind all of that, they are also dealing with the diagnosis that was given to them. For us its Autism and ADHD. For others, it’s a different diagnosis. I talk only of what is affecting our family.

Through my sleepy haze and caffeine induced perkiness, I see three children that have dwelt with what life throws at them with remarkable grace.  They each have their own journey to go on. But they all have the one component that reminds the same. Military Child. In their own way they have learned to deal with their Father not being home. Although my spectrum children don’t quite understand what Honor, Courage and Strength mean, my NT son sure does. But I see how being a military child effects all three. They are proud. They are strong. Even the two on the spectrum show it when they don’t know it.

So every April through the sea of blue and multitude of puzzle pieces, remember there are military children that have autism and living in a military lifestyle. They didn't ask for it. Many of them were born into it. Just as the Military member has every right to have a spouse, they also have the right to a family. And sometimes that family includes special needs children. 

Now if I could only catch a nap... That's right I am Autism Aware..