Behind starburst eyes

#HAWMC Day 7: Why I write about Autism

#HAWMC Day 7: Why I write about Autism. Tell us why you write. How long have you been writing? What impact has it made on your life? Write for 15-20 minutes without stopping.

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I write because if more people understand Autism than there will be less times that parents are ostracised and called out for their supposed flaws as parents. (Such as this)

I want to help show the parents of children that have just been diagnosed the beauty and wonder of parenting that still awaits them! I really am “Happy in Holland” and I don’t wish for different children. Instead I get my butt researching and thinking and planning on how to best help them to have a life they define as happy.  I’m going to repeat that, because I think that right there is a huge issue. I want them to have a life they define as happy. Nowhere do I say I want them to create the life I deem as happy, because it’s not about me, it’s about them. Just as my life isn’t about what my parents deem as a happy life, it’s about what my spirit says is personally fulfilling, and my children deserve the same right to choose their own happiness, as does every other person on this planet!

I write to help other parents see that they don’t need to feel helpless in their childrearing of Autistic kids; they can research and plan and create methods and ways to enrich their children’s lives and help them to access their fullest potential all without demeaning, or shaming them or their natural neuro-pathways. Such as ensuring their cortisol levels are decreased through regular physical activities so they have less overloading and meltdowns. Or making behavioural therapy plans while their waiting for ABA, or creating a sensory room, or finding ways such as massage or the creation of “nests” to make going to sleep easier for them.

I write about my sons’ health, about their “condition” because I want the world to understand the path they walk in this life. I want to share the beauty and wonder they bring to me, and to so many people around them. I want for others to see that yeah they’re different, but it’s beautiful and special and amazing and so incredible. I write about Autism because too many negative stereotypes exist and I can’t change them without shining a light on what Autism really is. What Autism really means and why neurodiversity desperately needs to be accepted by our society.

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Favorite Children’s Books for Children with ASD

help me be good seriesI LOVE author Joy Berry’s series “Help me be good”. It’s a fairly large series, there are 29 books in all. It originally was published in 1988 and I read every single one of them as a child myself. Fast forward an undisclosed amount of years to when my eldest son was 3 years old and we were at our local library. Every time we’d go I’d check out the books they had for sale as each was only $0.25. One cold morning I spied the entire collection all in pristine condition on their sale shelf. Excited doesn’t even begin to describe my reaction. I scooped up every single one of them! Why do I love this series so much? Because each book deals with a common behavior, discusses how others feel when a child is choosing that behavior, what a child choosing those behaviors might be feeling, and other positive ways of dealing with those emotions, or situations, all in easy to read, direct language that doesn’t use metaphors or confusing sub-text that a child on the spectrum might not pick up on. From the day we brought them home I read one every day to my son for the better part of a 2 years. Each day he would pick a book for me to read and I would pick one of Joy Berry’s books to read to him. He loved them. They helped him to understand social concepts easily and without feeling bad at not getting them without the books as it was never “about him” it was always about “another child” one from her books.

Interupting Joy Berry BookThe book about Interrupting says “You are interrupting when you talk when other people are talking… Try not to interrupt people who are talking to you. Allow them to finish talking before you speak. Say “excuse me” if you must interrupt them. When someone interrupts you, you might feel angry or frustrated. You might think that person is not fun to be with.”

At the end of each book it always says “It is important to treat people the way you want to be treated”

See, easy, clear explanations of what the behavior is, how people feel, and how to avoid doing it with simple blunt instructions on what is socially acceptable and what is not. I’ve already started to read them to my younger son, and while he’s not super keen on them yet (he won’t be 3 until Oct) with him already being diagnosed with ASD I think it just makes sense to start early.

After all a large part (not all but a big part) of ASD is a deficiency in social development and understanding. If my child had massive issues with math I’d do my best to focus on helping them improve their math skills to the best of THEIR abilities. No I wouldn’t expect them to get a PhD in mathematics but I’d help them to learn as much as they could to help them thrive to the best of their abilities. Teaching social skills from an early age in a more intensive or focused manner just makes sense to me for my boys with ASD. Their brains are hardwired differently, but different doesn’t mean they can’t learn, it just means they might need different ways of being taught and more time to learn the same things as a child without ASD.

For those that are interested, if your local library doesn’t have this fantastic series it is available on places like Amazon.com or Chapters.ca
Chapters also has her other series: “Let’s talk about” and “A fun and easy way” both of which I’ll be getting for the eldest to read and eventually reading with the youngest. 😀

If you’ve read her books, let me know what you thought. Were they a helpful book series for children with ASD? Or even helpful for children in general? (I personally read many of them with the kids I looked after in my daycare years ago that weren’t on the spectrum because I thought they were great for all children in general but especially ones that have social skill deficiencies.)

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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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Organizing Foods

MH900430659 N gets very excited by how foods are presented in bakeries, delicatessens, and the like.   He’s happy to try many different foods from these places, but when presented with these same foods at home he is unwilling to eat them. I was speaking with a friend who asked me an absolutely brilliant question about it. She asked me if I thought it was because of how visual he is and how neat and organized the foods are in those types of places that he preferred them. She asked me if I’d put his food into lines on his plate before and if so what did he do. To be honest I hadn’t done it before. I’ve made pictures with his food (happy faces or cutting roasted potatoes in the shape of cars) but I hadn’t actually taken his foods and made lines on his plate with them. With how much he loves organization, and lines in general I am actually quite hopeful that this just might work to help him eat better/more. Considering he’s currently on supplementations of various vitamins as well as a meal replacement drink due to his lack of current food intake I’m totally excited at trying something that just might make a positive difference in the amount of healthy foods I am able to get him to eat and enjoy! Wish me luck dear readers, this momma’s about to get the mandolin out to make some super organized veggie and fruit lines 😀

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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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Buying Friendship

An article I wrote about accidently buying friendships when you’re on the Autism Spectrum:

“They say money can’t buy you happiness, but can it buy you friends? While most people know the obvious answer to that is a firm “No” Sometimes people on the spectrum have more trouble with the concept of buying friendship doesn’t work.”

You can find the rest of the article at Parents Space:
http://www.parents-space.com/health-fitness/the-autism-spectrum/buying-friendships/

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“Our Story” Brochure

This is the tri-fold brochure that I created about my boys for various organizations to use at their events to promote Autism Awareness. 😀

Corbin and Nolans Story Tri fold brochure-page-001

 

Corbin and Nolans Story Tri fold brochure-page-002

Organizations that currently use this brochure:

Rockin’ & Ridin’ for Autism

Autism Canada

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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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All Roads Lead To Home

I have found with my eldest that he finds great comfort in routines, in doing things in the same order each time, and in taking the same routes to and from places. In essence he finds comfort in things staying the same. Unfortunately life doesn’t stand still. Life and people won’t stay the same. Situations, events, seasons, time, everything changes.

 

He was 3 years old when I started to try and help him to understand this difficult concept. I had made him a picture chart/calendar that I would update each week. Most of it would stay the same to give him comfort and familiarity. The thing that I would change on a regular basis was the WAY that we would arrive or depart from his familiar activities.

 

For example, we would go to a place called Airzone 3-5 days a week as I did a great deal of his socialization and behavioral therapy with him there. Airzone was just over a kilometer from where we lived at the time. Which meant that there were several ways that we could walk to or from it on any given day. Additionally there was a bus we could take or we could take a taxi. 

 

I knew how hard it was for him to accept any type of change in his daily routines, but I also knew that while I loved him with all of my heart I had to help him as gently and lovingly as possible to learn how to deal with changes. Both expected ones and unexpected ones. For if he stayed he did not learn to cope with changes, what would happen if he was on his way to work and a road on his usual route was closed? Would he be able to handle it? Would he end up calling his boss to say he couldn’t come in? Or would he be able to handle finding a different route to work that day?

Approximately half of the times we would come home from Airzone I would take him one specific way. It was his favorite way, he liked the things we’d see along those roads, he knew each of the houses and businesses we’d pass. The other half of the time I would take a deep mental breathe and deviate from our regular route. For countless times our deviations from the route he had picked as his favorite or preferred route were met with a full meltdown. He would be distraught for up to two hours, even after we’d arrived home and he could see that we’d managed to get home just fine taking a different path mattered not to him. He was completely overloaded by the change. While my heart ached I knew I had to do it. 

I wouldn’t take him a different route to get there as I knew he couldn’t handle it, and our actual time at Airzone was far more than just playtime. But to come home, well he knew we were on our way home and he’d be completely okay about that until I turned down a different street or did not turn down one he was expecting me to. It was a good thing that I still had an umbrella stroller for him for after he was done playing as him being buckled in was a huge safety measure on my part. For I could not have carried him for just over a kilometer while he was he was in the midst of a full meltdown. And he had such difficulty with change at the time that he couldn’t have walked anywhere with me. He would cry and scream “This isn’t the right way, this isn’t the way” and while it hurt my heart greatly I knew it was important to help him learn to deal with changes. I would talk, and explain the entire way home that it was okay that he was upset, but that this was just a different way we could get to the same place.

Once we got home I would cuddle with him on the couch, tell him he was loved and safe and that it was okay he was upset, that we were home now just as he’d wanted, we’d just taken a different way to get there.

It took 7 months of doing this with him before he became okay with taking different ways home. Fast forward 5 years and I now have a son that is excited about random road trips, and looks forward to adventures where he’s not entirely certain where we’re even going. He still has some anxiety about it if it involves overnight, but if he knows he gets to come home for bed he’s all for day trips anywhere, and anyway to get there is totally fine with him.

Knowing that each of those heartbreaking trips taking all the different roads that lead to my home with him when he was younger have lead he and I to this level of comfort make them worth it, completely. I still do it randomly off and on to ensure there is no regression with his comfort in that type of change, and he’s fine each time. He’s got that much more freedom for soaring as an adult because I made sure he understood that all roads can lead to home.

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