Behind starburst eyes

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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Workshop!

Informing the VillageInforming the Village:
A how to workshop on educating others about your child’s diagnosis

Offered By: Lindsey Asperger’s Autism Support
Presented By: Dawn-Marie Potter

They say it takes a village to raise a child, but how do you make sure the whole village that is involved in your child’s life is on the same page as you about how best to do that? How do you make sure they understand the vital things you know about your child so they too can have fulfilling interactions with them in ways that truly benefit your child? The answer, you teach them about your child. You show them what it means to be “John” or “Jane” Show them what helps your child, what hinders their growth, and how to help them to thrive no matter how your child is feeling at the time. Help them to understand who your child truly is, which is more than just a label, but a whole complete being that is capable of amazing things should they just be given the chance to shine.

You want to make sure every adult that will be partaking in your child’s life understands them. During the workshop we will explore multiple ways of informing and educating others about your child, their diagnosis and what exactly that means for them specifically. From brochure making, to one-on-one confernces, to cookie making (yes cookie making, there will be samples of that one for everyone attending to see how fun and yummy that method is 😉 there are so many different ways to open up and inform others. Come discover some of them with us!   

Workshop Details:
Date: May 21st 2013 Time: 7pm
Location: Upstairs meeting room of Loblaw’s located at 400 Kent Street, Lindsey

For more information on how to attend this exciting workshop please contact the LAAS:
Email: Donna: donna.thomson@sympatico.ca

or myself at dawnmusepotter@gmail.com

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Dietary Assessment

After a hopefully not too horrible trip to a laboratory near here for blood work for my youngest I then get to monitor every single thing he ingests for 3 days. All the way down to one bite or one teaspoon. All of this is for his dietitian appointment on Friday. With his self-limited diet I am concerned about his nutritional needs not being met. To that end I asked for an appointment be set up with a dietitian, and so while honestly I don’t really look forward to the blood work portion of tomorrow, nor to remembering to jot it down if I do get a bit of food finally into him I do look forward to the results from the appointment and of course the solutions that can be obtained from such an appointment. While I’d LOVE it if he ate healthily on a regular basis, with his texture issues that is not going to happen right now. So instead I simply wish to find out if Pedisure or something of that ilk would help to optimize his growth.

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He danced while I cried…

Tonight I cried while he danced. He looked like poetry in motion as music became movement. As fast as the bass that was pulsating through the speakers, his feet became a blur as they almost flew across the floor and through the air.

I watched and I knew in my heart this right here right now, was what he was born to do. It wasn’t just the ease with which he watched another contender and added their moves to his own freestyle piece. It was so much more than that. It was the way his eyes glowed with certainty, for he KNEW what to do. He “gets” how to translate music into movement. For all the confusion he still has in various social settings, put him on a stage or dance floor and crank up the tunes and watch the joy and sense of rightness that glows from within him.

Sweat soaked and muscles burning from exertion and still his smile illuminates his own starburst eyes that are so much like my own. It’s almost like the combination of music and movement unlocks some secret special place within him, and you can almost physically see everything “clicking” inside his mind for him. Like the movement pushes the confusion and anxiety that often plague him completely out of his mind. While the music pulsing causes synapses after synapses to occur in places that didn’t communicate properly with each other prior to that moment. For those few minutes on stage you can see how centered within himself, and whole he truly is, and it’s more beautiful than words can describe.
It’s his version of “therapy” for in those moments on stage he feels joy and acceptance in who he is. There, right there, my boy who has been judged for not being able to stay still, for randomly twirling or flapping his hands when he’s having a sensory overload is judged on how well he can move,

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Fragile X Syndrome?

This morning N went for his ADOS testing, and by noon today he was officially diagnosed as having ASD. I wasn’t surprised, after all I’d been this route with my oldest son. I’ve watched and seen the signs. But as I sit here tonight, I’m scared, and I’m sad.

I’m scared because I don’t know if I have what it takes to make sure he thrives in life, after all what if C’s successes were just flukes on my part? What if I screw up with N? What if I don’t know how to help him?

I’m sad because the doctor wants to test him for fragile x syndrome. Fragile X Syndrome is a condition in which the X chromosome that was passed from ME to my sons had a codon error that caused to many repeats in a certain part of the X chromosome. This leads to the person’s FMR1 gene either not sending enough signals for the proper amount of a specific protein that is essential in the brain’s neuron development. Or in more severe cases where the pattern is repeated more than 200 times, it turns that part of the gene off completely and prominent physical features as well as definite intellectual impairment occur. I’m sad because only I could have passed this on to my son. A male can only get it from their mother. Apparently according to the CDC 1 in every 269 women is a carrier and doesn’t know it. I might be, and that makes me feel guilty and sad. I know, I should first wait until the tests come back. Even then, it’s not like I knew it was a possibility or anything. I didn’t even know about Fragile X Syndrome until this morning. But logic and emotions rarely see eye to eye.

Fragile X Syndrome scares me because of the seizures associated with it. I’ve seen how difficult it is for a friend of mine to have seizures, not so much the seizures themselves but all the aspects of his life that are affected by his knowledge that one could happen at any time. I’ve also seen the physical pain he endures every time he has one. No parent wants to know their child is going to be in pain, that’s just a natural part of being a parent.

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