Wednesday, October 29, 2014

The Little Puzzle Piece that said Boo..

With Hallowe'en fast approaching, I am sure that everyone has gotten their costumes sorted out, candy bought, pumpkins carved and house decorated to delight even the ghostly of visitors.  Hallowe'en has always been a favorite of mine and my husband's. In fact, we love it more than Christmas. Before we had children, Hallowe'en parties were always fun to attend. Getting to be someone else for an evening was rather fun. When we started having children, our hopes to pass down our love of this holiday just added to our excitement. Cute costumes for babies and toddlers. The joy of seeing them get their first piece of candy in their bag. Or how they got grossed out over pumpkin guts. But that all changed when we had our children with Autism.

Autism is a funny thing. In regards to it being unpredictable. You never know what is going to be a trigger. So Hallowe'en being one of those holidays, that things don't appear to be what they normally are, we had to brace ourselves for the possibility that the holiday we loved so much would be celebrated differently.

Most of the general population, doesn't understand why this would be a triggering holiday. From the Costumes choices( or lack there of) or the inability to utter those famous words "Trick or Treat". Or not understanding the concept of why we don't go directly into someone's house, even through they are giving out treats. People don't understand that the strobe lights or the fog machines put our sensory children into a tailspin. I don't expect them too. Its just the way things are. But what I do expect is for people to have some understanding that there are little ghouls and ghosties out there, trying to do their best at trick or treating.

Our son, who is non-verbal has a hard time with this. I have been asked on many occasions, why I didn't leave him home. Well the answer is simple. I will not shut him out of society, because other people aren't comfortable with his existence.  He has every right to be with his brother and sister trick or treating. My response is always the same. He is just a little puzzle piece who says "Boo" in his own little way.

Hallowe'en and every holiday is for everyone. It doesn't matter how they experience the world. They are entitled to partake in the festivities.

Please if you do see a child that might be scared or overwhelmed, be a comfort to them. If they are not wearing a costume, don't get on their case about it. It could be that the costume is made from a material that bothers them. And if they don't say "Trick or Treat", it could be that they can't. They would if they could. And for most of us parents who love this time of year, hearing that would be awesome. But a lot of us just want our children to be accepted.

Just remember that there are going to be children out there who say "Boo!" or "Trick or Treat"in their own way.

Thursday, October 23, 2014

Why its important to talk about tragedies with the young

There are always going to be things that happen in this world that are beyond our control. Whether it be due to a natural disaster or a man made terror. We as adults are custom to trying to deal with what life throws at us. Our children are the ones that often times get forgotten in the chaotic aftermath of tragedy.

By now most of the world's children have either suffered  or have learned about the horrible stuff that goes on in the adult world. You don't have to be a child psychologist, to know that children understand the world differently. Their understanding of events that shape their lives, is a different reality to how we adults understand a situation. And that is the reason why it is important to talk about tragedies.

What I am not suggesting is an explanation that full of the nitty-gritty or the very serious nature of a situation. But talking to your child about how a certain situation made them feel. Most times, for a child, its fear. They will see the full range of emotions that most of us have, when something tragic happens, but to full comprehend those emotions, they just can't. They are going to hear about things that happen in the world, as we have entered into an age where information is passed so quickly and openly, that is its hard to tune stuff out. So you can't shelter them off from the world.

So what do we do to help our young ones understand tragedy?With so much going on in the world, its very easy to get confused.

There are so many things from Mr. Rodgers to Sesame Street that have excellent starting points on how to start a conversation. But you need to find a dialog that is appropriate for you, as well as your child. You know just how much your child can understand about things. Trying to find the right wording or basis can be hard. Its hard to talk about difficult things. Especially things that deal with death or a disruption of their daily life. Maintain that open dialog. Address those fear that they have. Make sure they know who to trust and who not to.

Children are ultimately going to learn about the world, whether we like it or not. But it is our job to make sure they understand that things aren't going to be rainbows and puppies. We, as parents need to be prepared to talk to our children about things, so they have a better understanding of this world. That they know if something bad does happen, certain feelings are ok.

For me, I have had to have the open dialog with my children, as their father is military. I don't get into the specifics of why their father has to go away. But they do know that there are people who live on this planet that aren't nice and that they do bad things. They understand who they can go to if something bad happens.

With the world being the way it is, it is important that our children know that fear is only natural. Its ok to be uncertain. But that they know they have trusted people they can talk to about their feelings.

The world is shaping up to be a scary place and our children need to be prepared for that reality.

Sunday, October 19, 2014

The Little Girl who added a little Sparkle to her world.

Most people see glitter and sequins as the bane of the craft world. Most of us parents balk at the art projects that come home covered with so much glitter you could see it from orbit. But for the nine year old little girl that lives at my house, glitter is what makes her happy. For her there is no such thing as too much glitter or sparkle.

Monday, October 13, 2014

The Missing Sensitivity Chip

Its not a big secret that this world has it's fair share of assholes.Most of us learn to deal with a great deal of them on a daily basis.The ones who cut you off in traffic or don't hold the door for you, we tend to just shrug them off.

Its the ones that are missing their sensitivity chip, who this post is for.It seems that this is a problem that is getting out of hand. More and more, people out there are forgetting just want it means to be sensitive to others or the world  around them. Either from just sheer ignorance or just plain malice. It troubles me.

I understand that people have a right to their opinions. Right or wrong, you are free to voice your thoughts about society and the world. But what bothers me is there is no filter on the statements that are being made. None. Zero.

It's easy for one to silently judge someone within the confines of their own head. All of us do it, whether or not you want to admit it to yourself is your choice. But we all have our own thoughts. The problem is those who verbalize their judgement and thoughts. As though they are immune to the sensitivity of the situation or person.

These past couple of years, with having special needs children, has opened my eyes to just how bad people can really be. From the stares to the comments. Even the suggestions are a lot to take in. Its almost like people can't help themselves. This verbal diarrhea syndrome.

I see it everywhere. It doesn't just apply to just my children. From the rampant racism in this country to the homophobic slurs.From conversations online from everything from parenting to how you cook your breakfast.  It's disturbing that people would treat or judge each other the way they do.

It does seem that most of the world is missing it's sensitivity chip. No one gives a shit about how their statements might come across as hurtful or demeaning. But whatever, at least they got out what they wanted to say.

So the next time you are tempted to say something about someone or a situation that you have no experience about, tap into your sensitivity chip. Ask yourself, how you would feel if the roles were reversed. Do humanity a favor and be a better person. And by better person I mean, keep those judgmental, asshole opinions to yourself. And if you can't, then be prepared for people to question your morality.

Please don't be one of the assholes that roam this planet.

I am not out to change the world. I am just a small, insignificant blog that normally writes about Autism and the joys of military life. But it does indeed scare me. With social attitudes the way they are, how is it that the next generation is going to learn anything about being more culturally or socially aware of their planet, when it's up to us adults to teach them. When in all honesty, we can't even help ourselves with that lesson.

Saturday, October 11, 2014

A House Divided.

By now the news of Kelli Stapleton has reached a world wide audience. I wasn't going to write about her, but I feel that there are certain aspects of this situation that need to be addressed. It has indeed rocked the autism community to it's core. It has pitted parents against self advocates, the real world against the autism community and so on. I honestly believe that the house has been divided.  The people who support Kelli vs the ones who consider her a monster.

For those of you, who consider her a monster, I know that you can't fathom any parent trying to kill their own child. Whether it be out of malice or due the mental instability of the parent or the fact that the parent doesn't want to see their child suffer any longer, you can't wrap your mind over the fact that someone would do this. Murder is Murder.You want justice for that child(ren).

Those of you who have supported Kelli, you have understood that feeling of reaching the point of no return. When every outlet that you had, either slowly diminishes or goes away. That feeling of being backed into wall, with no where to turn.

The media has not been kind to this situation. It seems that, as usual, it has all missed the important component. Autism. Kelli Stapleton brought Autism out of the shadows. She made it possible for people to talk about it. In a very sad way, she brought to light, the pressures that most of us caregivers are under, while trying to make sure our loved ones are taken care of. It is remarkable just how much we can take, before we all snap. Kelli put that experience on the map.

It is sad to me, as a parent of not one but two children on the spectrum to see a community divided. To see the nastiness flowing so freely. Attacking one another like a pack of rabid dogs. Instead of talking rationally about how we can prevent circumstances like Kelli's. We can all agree that the final choice of Kelli's was a bad one. There is no one denying that trying to murder her children was a very poor judgement. But it was the judgement made by a person who had lost all hope. A person who thought that, this was the only way out. When she needed to have someone help her, she hit road blocks.

We, as a community need to learn from this. We need to stop pointing fingers at each other. Instead of victimizing and vilifying, we need to take a stand. So when we do have parents or caregivers out there, who have felt that they can't fight any longer or that they have reached the end, that there is a community out there that will support them. Help them get through a tough situation. We need to stop playing the blame game and stop being a house divided.

Be kind. Be accepting. Be there for someone.

Wednesday, October 8, 2014

The Perfect Imperfect world.

Designer Babies. When I was pregnant with my youngest child, this term was being tossed around the baby world, as something that people could now do. Make sure you had the sex of the child you wanted or if they were going to have the eye colour you wanted even before your child was implanted into your womb. And I could remember at the time, as I felt my little one kick within my own womb, what would happen to the world if we didn't have imperfection? If we started having these genetically modified children. Sounds like a Sci/Fi  movie or concept doesn't? Now I really don't know anything when it comes to talking about genes or chromosomes. Just the basics that I remember from 10th grade biology class. But at the time it really got me thinking. What really made me think, was how would societies' view change when there isn't an imperfection within it's norm.

When I think about all the children that grace this planet with their presence, I look at the things that make them different from each other. Skin colour, eye colour, hair colour, short, tall..etc.. If we were all the same, how would we learn about accepting differences?

With in the special needs community we have a hard enough time trying to gain acceptance from the outside as it is. Whether or not our child has a physical, developmental or mental aspect about them, it seems that they are the ones that garner attention from those who do not understand. But what if the imperfections that society puts on them, help the human race figure out what acceptance is?

A lot of us, who are the old war horses in the special needs communities, get sent those stories of that special needs child that made a difference. The one who proved to everyone to not discredit them from society. Those stories of those who change the way someone thought about a certain syndrome or disorder.

They are the ones that will inspire others to be better human beings. The ones that will make people stop and think. Out of all those people who stare or make comments about a special needs child, those parents who fight to educate those who don't know, most times those people will either walk away learning something or they will be left to their own ignorance.

Most people who become a parent, looks at their children as perfect. It doesn't matter. Special Needs parents look at what society deems as imperfect, as perfection as these are our children. They may need a little extra love and time to grow and prosper, but we would never change anything about them to make the perfect in the eyes of what society deems perfect.

Celebrate the imperfections. They are what uniquely make up you. They are what is going to teach the rest of the world that there is no such thing as a perfect person. People may try, but at the end of the day we were all still that imperfect person.

Friday, October 3, 2014

Things I wish my Children's Teachers knew...

Before I start this post, I am going to state that not all teachers are created equal. We have some amazingly awesome teachers out there, who truly love their job and their students. But we also have a good number of teachers, who have either lost their way or have forgotten why they became teachers in the first place. We have been blessed with a good number of fantastic teachers, that have enriched all of our children's lives. But with those, we have also had the ones who didn't take the time to properly teach or even get to know the special students within their classroom.

As the school year begins in full swing, its thus starts for us parents the scheduling of IEP meetings as well as trying to get our children back into routines. Its stressful. Most times we have children that either very keen to get back into something that gives them comfort or we have children that fight us every step of the way, as it is a change that is monotonous to them. That is not say that this will be the norm for the rest of the remaining school year. But it will take time adjust. With all of that, these kids are adapting to a new classroom, sometimes a new teacher, new aides and a slew of new faces. It can be hard for a child with Autism to navigate. Again, once there is an adjustment, certain behaviors will decrease.

With all that being said, us parents have a difficult task of trying to figure out things that will help our children into this transition. Which is why we rely on our children's teachers to help us out. You guys are with our children most of the school day. You will know what is setting them off and what is working to help them get through their day. Now, all of us parents know that teaching children is not an easy task, again one of the reason we are so grateful to you all.

That gratefulness comes though, when we can see just how much you mean to our children. When our children come home from school, still having that wanting and joy to learn, it means you have done your job. When our children, who are verbal, talk highly of you, it means you have done your job.

But when our children, have no desire to learn, refuse to go to school, or even script from the bad days you have, which is them screaming the same things you have done in class  or the report cards aren't reflecting the IEP goals,  then sadly we parents, become "Those Parents" That is when you start to see the fighter in us. We don't want to become those type of parents that you complain about. But its just one of those things that happens to a parent when they see that things are not what they are supposed to be or IEPs that aren't being followed.

Speaking of IEPs, the meetings are just as stressful to us as they are to you. Especially when you know that our child is struggling. Its one thing to sit there and tell us that our child is a joy to have in class, but then list all the things they are doing wrong. Work with us parents to find a plan to help our children. Except that everything is trial and error. Somethings are going to work, but somethings aren't.  It is very demotivating for us parents, when there is no interest or when you have no idea what this child is capable of.  There is a reason they give you a snapshot of the IEP at the beginning of the school year.

Again, I am not saying that every teacher out there is bad. There are some absolutely fantastic teachers out there, who really love the job they are doing. But if you are a teacher, that finds themselves screaming a lot at your students or singling out the special needs children because you can't deal with how they deal with the world, then maybe you need to take a step back and reevaluate your job.

Most of us parents, don't want to seem angry all the time at the school system. Most of us just want a decent education for our children, that happen to need a little special attention. So when you guys sit down and decide who is going to have the opportunity to have a special needs child in their class, please take the time to really think about it. Review the snapshot of the child's IEP. Familiarize yourself with your students. And its ok, if you aren't up for having a special needs student in your class, but be honest about it.

For those who are blessed with having our children in your classroom, you are the teachers that will concrete that love for learning. You are the ones, that will make an impact on our children's academic life. I know that there are going to be days, where its going to be crazy, but you have a room full of impressionable children. I can't not stress that enough.