Behind starburst eyes

Step One: Make A Plan

Last week I wrote how I had decided to finally follow my dream and chase the sun with my husband and kids.

Well to do that I needed to make a plan. I know I could have just leapt blindly, but as a mom and still a student myself I couldn’t just have us pack a bag and hope for the best!

Logically step one was to research trucks, and insurance:

After researching we choose this awesome truck:

Stay tuned for step 2: researching and purchasing a trailer!!!

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Some things you just can’t Google

There are times when I get caught up in ensuring that Mr.C is “on-track” or “at grade level” with his peers. I get fixated from time to time on the lists lit up upon my computer screen of all the things our local school board says he should know at this time. Lists of facts and figures, books they have chosen, grammatical rules and scientific theories. But no where in their reams of pages does it speak of morals, attitude, creative thinking, leadership skills, ingenuity or honour.

When I get caught up on what he does or does not know academically, I remind myself of the following:

I am not here to create a robot that can spout facts or scientific theories verbatim, but lacks the ingenuity to put them to productive use when he needs or even wants to do so.

I am not here to force him to memorize plots and dialogues, but lacks the critical thinking skills to grasp the significance of some of the literary works of art we currently have access to as a society in general.

I am not here to ensure he conforms to someone else’s standards, but lacks the honour and strength of character to stand up for what is right when what is wrong is being accepted as the status quo.

What I AM here to do is to teach him to (eventually) be a good man. To be the type of person others will be proud to call their friend, their ally. To be someone with enough courage to stand up for what is right, even when he’s forced to stand alone to do so. To be a man of honour, of integrity, to be a man of  ingenious leadership abilities, even when he’s only leading himself along his own path.

Don’t get me wrong, I DO teach him academics, but if it takes him a bit longer than some piece of paper says to learn about the periodic table of elements or the correct placements of commas I’m okay with that. Why, because he’s learning SO much more right now, he’s learning how to become the man he will be for the rest of his life.

Plus if he forgets the standard conversion rate of ATP to ADP he can Google it, but when it comes to things like strength of character well there are some things you just can’t Google 😉

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Remembrance Day

Remembrance Day is almost over, but the sentiment it is meant to express lives within my heart every day. It’s a day to remember those that have fought for our freedom. Those whose blood and sometimes very sanity have been shed in a quest to keep their family, friends, neighbours and even strangers safe; from those that would oppress. From those that would annihilate others that are different then themselves. I was grateful to those that served before I became a mother, I was taught how my freedom had been garnered through the brave sacrifice of others. I loved history as a teen, I found reading it at times appalling (some of the horrifying actions done in the names of advancement, religion, and so many other excuses that were used to justify atrocities) and at other times it was heart-warming, and inspirational. I learnt at a young age that no soldier chooses for the wars to start. But they do choose to be the virtuous, honourable men and women that fight, and defend, and stand strong in the face of atrocities so vile the majority of us couldn’t even handle one day of, never mind several months or years of. They do this, they live through it all, just so we are spared those very same atrocities.

Then I had children. One summer afternoon I watched as my eldest (then just 3yrs old) rode his tricycle on the side walk by our apartment. I watched as the sun glinted upon his hair, the warm breeze carried the scents of someone’s barbecue, mixed with rich blossoms and his laughter glittered upon the air like crystals of joy as he finally got the hang of peddling. It struck me at that moment how lucky I was that others had fought so I could experience this moment as only one can when there are no threats to the very peace and freedom that affords such a moment. Later that night I went home and looked up how to write to soldiers. I found that as long as I knew a general area (operational address) I could send letters any time of year and that a Canadian soldier that does not receive mail would be given the letter. I have sent letters since then, and until every single member of our Armed Forces is home I will continue.

I still send letters throughout the year, because I don’t just remember when the red poppies start to appear. I remember every day I am blessed with the freedom to raise my children the way I see fit. I remember every day that I can walk down the street without fear of enemy forces invading our land, and the ensuing horrors that would be wrought. I remember every single day. As we all should. No, as we all NEED to.

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It’s a bird, it’s a plane, it’s a kid on a leash!

imagesCA0TBJHUWell tonight I finished modifying N’s little blue backpack into a harness style backpack complete with a “tether strap” as it’s called when one is selling it apparently. (I looked online but figured why pay that much money for one when I’ve got everything here to convert a regular toddler sized backpack instead) In reality it’s a leash and it’s attached to my child via the backpack. I have fought doing this for a while, and each time we went out I would faithfully ensure I had the stroller and he was buckled in. Once in a while I’d walk holding his hand, but with his aversion to touch so often holding hands is NOT something he’s in to doing, and letting him just roam and hoping I can catch him when he darts out onto the street in less time than it takes for a car to hit him is NOT something I’m cool with. In fact it terrifies me, and while I KNOW I’ll get the inevitable backlash for “treating my child like an animal” (trust me I had this reaction with C, and I hated it. I hated that no one could see I JUST wanted to keep him safe.) And I know I’m going to upset people with doing it with N.

Here’s the thing though, I can’t NOT do it. Well I’m sure I can in fact, but my heart is pounding from the moment we walk down our front steps. I’m sweaty and nervous as I carefully grip his wrist/forearm (he won’t hold hands at all) I’m watching every direction, frantically looking all around us and trying to watch him at the same time. All the while I’m still holding onto him for dear life. I try to get to our destination as quickly as I possibly can get him to go, and frequently ask him if he wants me to carry him. Why because he doesn’t understand danger, and that makes me terrified. He runs towards moving cars because he’s so fascinated with cars in general. And trying to just say “No” or “Stop” does NOT work with him. especially since he’s often overloaded auditory wise and covers his ears, but doesn’t ever stop moving.

Now, tonight we went on a little walk with his new modified backpack. I held his forearm while he was walking down the stairs and then I let him just walk. He got to choose where we went because I was just enjoying watching him finally have the opportunity to discover his neighbourhood at his own pace. We stood at one point and watched a cricket and I told him about how the cricket makes music. He loves his backpack, and insisted we put cheese in it for our walk 🙂 He’s not upset by it, even when he tried to dart towards the street and it stopped him (he didn’t fall or anything, he just couldn’t go any further than a few feet from me) he just looked back at me and then pointed at the cars speeding past and smiled saying “brooms!” which is of course his word for cars. So yes I loved the peacefulness with which we were able to just “be” together, in each other’s space, experiencing an evening walk together, marveling at all the things that I would have forced him to miss in my haste to get him somewhere safe prior to his new backpack.

Alright dear readers, I’ve taken a deep breath, let me have it.

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The mystery of crayons

Another box of crayons has been unwrapped. N still loves very much to unwrap each one. His slow methodical precision is fascinating to watch. No piece of paper is left, no matter how small. I wish he could type or sign or say what he appears to be looking for when he unwraps each crayon. It’s certainly not an absent-minded action on his part, for each movement of his little fingers is deliberate and sure. His eyes never look anywhere but at the crayon as he unveils it in its entirety. Is he making sure that each part of it is the exact same shade? Does he think something else might be hidden underneath the paper? Or does the feel of the paper it’s wrapped in scratch his hand when he tries to color with it? Is he removing an additional sensory stimulation he does not find appealing? One day when he can answer me, I’ll ask him and listen with bated breath as I’m given more than just a glimpse into the thoughts and inner workings of his precious mind. Until then I will marvel at his concentration, and at the deliberate movements of tiny fingers busy at work. I will marvel at how his eyelashes flutter as he stares so intently upon the unveiled crayon and carefully places it with the others, only to pick up another paper covered one and start again. He won’t be done the task he’s set himself upon until the box is finished, and I won’t ever be done watching him in awe as I get glimpses into his breath-taking mind.

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Autism is NOT a death sentence

Just over a month ago C and I made cookies for his home school group at the YMCA to help promote Autism Acceptance. With how positive of a reaction we received from them I asked one of the people who helps to coordinate the Orientation for Parents of Children Recently Diagnosed with Autism at Grandview Children’s Center if they would be interested in having some at their next orientation. She spoke with the her colleagues and they said yes. So today I went and got more business cards for the packages I’ll be dropping off Saturday morning. I’m happy that they said yes to them as I feel they do have a positive message to them. So often I hear of parents being absolutely desolate about their child’s diagnosis, and I think our perception as a society needs to change about that.

Last year on C’s 8th birthday his father and I were not with him. The night before, I called everyone that was supposed to come and told them that we had to post-pone his birthday party. Why? He’d done NOTHING wrong. We had to cancel his party and leave him with his Nana because we had a funeral to attend. A close friend’s 23 month old daughter had passed away. Now that was something to be absolutely desolate about. Her’s is a place that will forever be empty at their table, the memories of that beautiful precious little girl are what her parents get to hold instead of her. That is a truly devastating loss. One that those two parents must bear.

But to perceive a diagnosis of Autism as the same level of tragedy as the loss those parents deal with every single day is in my mind an insult to both the little girl who will never have a second birthday, as well as to the child diagnosed! It is NOT a tragedy that one’s child has been diagnosed with Autism, it is not something they will die from. Will there be some areas of their lives that are more challenging because of how their neuro-pathways work? Yes. But that’s what parents are for, to help their children to thrive to the best of the child’s abilities. Now I understand that some people would argue that a child classified as “Classic Autism” or as “Low-Functioning” does not have the same level of abilities to function as a child that is classified as “High-Functioning” I’m not arguing levels of abilities, but I am arguing that Autism is not a death sentence and should not be approached as one.  Yes there will be times that are hard for both parent and child. There will be times when as a parent you might not be sure how best to help your child. There will be times when they are judged negatively by others, when your parenting choices will be called into question by others, but all of those statements are true for parenting of any child!!!

To mourn the loss of the child you thought you had, the one that won’t _______ because they have Autism is unfair to your child. They are still the same child as they were prior to a diagnosis. They still have feelings, thoughts, dreams, wishes, fears, hopes just like any other child. Will they need different kinds of help or parenting than you originally thought you’d have to provide when you learnt you were going to become a parent, perhaps yes. But our job as parents is NOT to dictate what they need, but to observe them and their ways of communication to understand what each unique child needs us to provide them with and help them with.

These children can and do go on to lead lives that are happy and fulfilling for them, perhaps it’s not your definition of happiness and that’s okay because it’s not your life, it’s theirs. As long as your child is alive, and happy what on earth do you have to mourn???

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The Struggle Makes Our Wings

MH900444833I find it fascinating that while we’re more connected and more accessible to each other now than ever before we tend to develop weaker bonds with one another, and we tend to lose touch with people far more often now even though we have the internet, the phone, mail etc. verses when we could only ride a horse or walk to see each other.

It’s almost like it’s the ease with which we can form all sorts of new relationships that prohibits them from growing into lifelong committed relationships that can span anything.

It reminds me of the story of the butterfly’s struggle:

A little girl found a caterpillar one sunny afternoon in her backyard, and it tickled her when she picked it up. She brought it in her house and showed her mother. The mother allowed her to keep it, but the little girl had to take good care of it. So she brought it leaves every day, and made a little house out of cardboard for it.

One day the little girl woke up and she couldn’t find the caterpillar, all she could find was a long white thing that was hanging from the top of her little caterpillar’s house. Her mother explained it was a chrysalis and that the caterpillar had made it, and was now inside of it, just waiting for the right time to come out as a beautiful butterfly.

The little girl waited and waited, and when it had felt like she had been waiting forever she noticed that the butterfly was starting to come out. It looked painful and hard to her so she started to carefully open the chrysalis for the butterfly. She had just started when her mother found her and told her to stop. She did and asked why, that’s when her mother explained that it was the struggle that helped the butterfly to form such beautiful wings, as it emerged and that if she continued to help the butterfly’s wings wouldn’t form right and she’d never be able to fly.

The little girl thought that was very sad and stopped helping immediately and sat watching for hours as the butterfly slowly emerged from its chrysalis. The beautiful butterfly then flew around the room testing out its wings and the girl watched in wonder. The butterfly flew out the window after fluttering on her hand, tickling her with its wings just as it used to with its fuzzy coat. While the little girl was sad at first, she wasn’t for long, for every afternoon the butterfly would come back and flutter around the little girl while she played in the backyard.

Human nature makes me think of the girl and the butterfly, it appears as if we all want better, quicker, faster, new and improved, instead of substance, instead of real worth.

It makes me wonder, is easier really better? Or are our “shortcuts to happiness” really making us walk the wrong path towards  loneliness instead of the path we want of true committed relationships (with family, friend or lover).

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To My Children

From the moment I knew each of you was on your way I have spent every moment of my days and nights devoted to you.

I anxiously awaited your arrivals,

I have pondered for countless hours a million different aspects of your upbringing, from the largest facet of child rearing to the most minute of choices,

I have made countless phone calls for counsel on the best way to handle various situations I found myself immersed in due to being your mom, searching for the best solutions for each of you,

and I promise you that I shall continue each and every day to be the best mother I can to each of you…

I’ll go hungry so that you may eat,

I’ll go cold so that you can be warm,

I’ll go without sleep so that you have time to dream,

I will fight for you so that you are safe,

I will stand in the shadows so you learn how to shine,

I will find time when none exists to do whatever needs to be done to see your faces light up with joy,

I’ll endure whatever hardships are necessary so that you always have what you need no matter the cost to me,

At the end of it all, I will let you go with a smile upon my face when it’s your turn to fly; Knowing I did every single thing that I could to help each of you reach your fullest potential as the amazing individuals that you are…

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It’s not freedom if they can’t chose for themselves

I’ve read many things online lately that speak of the acceptance debate about Autism right now. Numerous of those articles say things like “It’s not true acceptance of the person if you try to teach them social skills, because that’s just trying to change them, not accept them the way they are” I disagree with that idea.

 

For me personally, I feel that teaching all the social skills as they are now called to my Autistic sons is akin to teaching spanish to my children who were born speaking english. Why would a parent do that? What could be gained from a child learning a second language? You guessed it, they could communicate effectively to gain what they needed from a vast array of situations with more people than if they only spoke one language. Does teaching them spanish imply that their first language and native tongue will always be less than the second one they were taught? NO it doesn’t. Does teaching them spanish mean that I will not listen to them or converse with them if they speak in english instead? NO it doesn’t. It means that should they decide at any given time that speaking in spanish would be more effective in a specific situation for them to obtain what they want or need that they can. Not that they have too, just that they have the option to express themselves in both languages, and that they can choose either option at their own discretion.

 

I think the difference between what I believe and the persons stating it’s not acceptance if you teach “NT” social skills to your autistic child is that I’m NOT saying they HAVE to use what I’ve taught them, I also plan on teaching them how to bake a cake from scratch, doesn’t mean once they’ve learnt how to do so that from morning till night they have to bake cakes non-stop. It just means if they want too they can, and I’m ALL about them having the freedom to choose, but it’s not freedom to choose if they aren’t allowed to explore all their options and then choose which one/s are best for them specifically. I also won’t teach them that they are wrong or less for their natural state or “native tongue” to continue with my original metaphor, just a simple statement of fact that it might be useful to also know this language in addition to your own.

When I teach a “social skill” I explain in detail what the general perception is, what my perception is, and encourage their own thoughts and feelings to be discussed about it. Such as when my eldest wanted to wear his transformer’s costume to the mall in May. I asked why first and he said because it’s fun to pretend he’s Optimus Prime and he loves how soft the costume is his Aunt and Uncle got him. I told him I agreed it is fun to pretend, and it is a very soft costume. I also told him it was perfectly fine with me. I did explain that some people might think it was strange that he was wearing a costume when it wasn’t close to Halloween and they might say something unkind or mean to him because of it. But that I knew how much fun it was to dress up and that as long as he understood that might happen I was proud to hold his hand in any mall while he wore any outfit he could find. He decided he’d wear it, and when there was a rude comment about it he replied “I’m wearing it so only my thoughts on my costume matter” and off we continued in the mall.

SO I did not force “NT” social skills, nor suggest that I felt he was wrong or bad for his choice. I reinforced my unconditional love and acceptance for him exactly as he is, but also told him the truth of how it might be perceived to allow him the choice of “did other’s perceptions of him matter to him in these circumstances” clearly that moment showed a definitive no, but at other times it might be a yes and that’s okay. Because it’s still allowing his feelings, thoughts and wants to ultimately dictate his actions, which is exactly as I think it should be.

But one of the things that I’ve read and seen in my own sons time and time again is that the inferred portion of any interaction is not always understood or picked up on. So it’s my job as their first teacher to teach them all of the hidden things they don’t automatically pick up on and then let them decide how they wish to proceed. That to me is the true definition of parenting, to help them understand everything and decide what is best for them personally from there.

I parent this way because I started with one goal in mind for all of my parenting choices “to ensure my children’s happiness” Then I simply work backwards from that goal by asking “What will make them happy?” or “Will ______ make them happy?” Sometimes I know, and sometimes I have to either ask them or watch and see. I then base my choices from that, because it’s not about what makes me happy, it’s about them. They are first, as they should be.

For example my youngest son has no interest in other children his own age, while I know that some people feel I should “encourage” read force him to interact with other children to make him more social and therefore more socially acceptable I don’t. I bring him to places with our family because he is an integral part of our family, but if his bliss is to spin the wheels of his toy cars and not play with other children his age that are around him I’m fine with that. Why, because he’s happy. And all I want is his happiness. I truly believe that both of their happiness, heck anyone’s is based on being able to have their wants and needs met on a consistent basis. So yes I’ll continue to speak in english with them, while I also teach them spanish so they can decide which is right for them to be heard clearly and their needs and wants to be met in the manners they wish for them to be.

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How Behavioral Therapy Changed Me

Almost 9 years ago I gave birth to my first child. He has been diagnosed with PDD-NOS. One of the KEY things that are advocated for children on the spectrum is behavioral therapy as soon as possible, as frequently as possible. For several reasons that are not important to this post I chose to research as much as possible about behavioral therapy and to provide this to my son directly. For who would know him better than I? Who would recognize the small signs that he was mimicking faster than me? So I started…

Many people who meet him now tell me that they wouldn’t have recognized that he was on the spectrum right away or without really “looking” for it. Several people that have known him all along tell me how incredible the change in him is over the years.

I devoted every single waking moment from the time he was 2.5yrs old until he was 6yrs old to him and all that he needed to learn to function in our society. I broke down every situation we came across and explained every person’s part in it. I explained what wasn’t said out loud but was inferred, how to tell when something was inferred, how to infer himself. As well as the crucial lesson of how to NOT infer something he didn’t mean.
From the time he was 6yrs old until now I have had to share the time I devote to him with his younger brother and then with his younger sister as well as his 2 step-sisters. But still I make his behavioral therapy a vital, integral part of every single day. I will take the time to explain everything I possibly can to him, because I HAVE to. If I don’t, he won’t “get it” and you know what I’ll be blunt, I think I’m doing a damn fine job. I’m proud of the son I’m raising. I’m going to say that again because it bears saying twice it’s that important: I’m proud of the son I’m raising!

I made sure I was breaking down every single little social construct for him to examine, digest, process, and assimilate into concrete information he can later use in different social settings to obtain the results he wants from them. Now he might simply want to make a friend, or eventually walk into the tumultuous waters of romantic relationships and while I know he’ll have trials, heck we ALL do! He’ll do okay, no scratch that, he’ll thrive! Why? Because of every moment I put into making sure he was given every single advantage I could give him, and every scrap of helpful information I could think of to ensure his success in all he chooses to do in life.

Now the unexpected part of his behavioral therapy…IT RADICALLY CHANGED ME!

By having to break down every social construct to it’s basest nature/reasoning I had to understand those same social constructs and as I started to explain them I’d think to myself how ridiculous some of them seemed. And eventually I’d hear similar thoughts from my son about some of them. And at first I’d try to justify why this or that was the way it was when I could see it was ridiculous just as he could. But as time went on, we came up with a short hand almost by accident, after I’d explained something one of us would look the other in the eye and say “I know, but it is” and that said so much to both of us. It reaffirmed for him that it wasn’t just him that didn’t “get” why such a social construct or rule was in place in our society in general or in that type of situation specifically.

But it also was a wake up call for me. It made me question SO many social rules, and slowly without actively realizing it, I started to discard the ones that didn’t make sense to me. I stopped adhering to them, I started to become a lion amongst sheep if you will 😉

In part it was because I gave my son that very same freedom. There were oh so many times he would tell me he understood that what he wanted to do wasn’t considered socially acceptable. That he understood he might be made fun of but that he had to be true to his own self. Why did he say that? Why did he choose to go to the mall in May dressed up in his transformers costume, or have me paint his nails crimson red because he thought it was a great color? Because I promised him, I’d hold his hand in support no matter what his choices. I told him I couldn’t be prouder of the young man he’s becoming if I’d chosen every single aspect of him myself ahead of time. I told him that I love him unconditionally, and that means NO MATTER WHAT, FOREVER. I told him to be proud of the Lion he is, to not worry what sheep think. I told him that REAL friends will care for him EXACTLY as he is.

I’m the type of woman that feels if you’re gonna talk the talk, than put on your grown-up underwear and walk the walk!

So I did, and now I do. Does that make me uncomfortable for some people to be around, YEP! Does the fact that less people like me with how blunt I am now sadden me, honestly hell yeah. I’m still sensitive to criticism, but I’ve learnt that it’s better to be criticized for who I am than liked for who I’m not.

A cousin of mine recently told me that I’m “transparent” because I don’t “do” all the fake niceties. If I’m nice, it’s genuine, and if I’m screaming that I can’t stand you, well then that’s real too (I know I need to work on my temper, but that’s another post 😉

On the plus side, it means that I don’t EVER offer flattery. I do however frequently give sincere compliments. Because it’s NICE to hear the positive. I simply make sure what I say is the truth as I see it. So if I say to someone that their smile lights up a room, I mean it! If I tell someone that I treasure their friendship, than you guessed it I really do!

Am I aware that I’m talked about behind my back in ways that at times make me cry, yep that’s why they make me cry. But I refuse to let someone else dictate who I am to be and how I’m to live my life.

The ONLY person that has to live with all of my choices is me, so I need to be at peace with them. Even if I’m the only person that is, than that is what it is.

It’s ironic, because I’m more blunt, and harsher in my personality than I used to be I am liked less than I used to be. YET, with all that I’ve struggled with, and all the times I’ve fallen asleep physically sore from the gut wrenching sobs I’ve cried when the days were really bad for my son I’m now ALLOT more sensitive and caring than I used to be. People that I call a friend matter to me, deeply. Even when their “new” friends, because I stopped a long time ago trying to make friends just to “have lots of them”.

Instead I open up to those souls whose energies resonate with me, who make me feel like I’d be honored to have them in my life. I TRY to make friends with those people that I can see would be a true blessing to my life.

So my dear readers beware, life isn’t easy being true to your own self at all times and if you too try to embark upon either helping your own child with behavioral therapy or *gasp* becoming a behavioral therapist take heed to my warning, it WILL change you! 😉

You WILL have less time for BS. You will say what you mean, and mean what you say. You’ll “see the other side of the coin” about most situations, even when it’s to your disadvantage to do so. You’ll notice when it really was your fault, and you’ll feel the need to own up to it. You’ll feel, truly feel a connection with people that you call your friends or family. How you treat them, even, no especially when they don’t realize it; will matter to you. In essence, you’ll want to be able to look a child in the face and without embarrassment or shame explain your actions when they ask why you did or said _______.

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