Behind starburst eyes

Jul 7

There’s Always A Reason

by starbursteyes

During a pandemic isn’t the most obvious time to decide one is going to start working on a trailer and planning a trip across the Americas.

While yes a part of the reason is definitely because we couldn’t go on our grand adventure across Europe, another part was the lump I found on my sternum. I needed something to focus on while I waited for results.

While many people equate Autism with a certain amount of social oblivion, where my boys are concerned momma being upset sets off alarm bells real quick! Couple that with this pandemic already having them more anxious and the inability for me to go off from them for awhile while I process and you’ve got the potential for a whole lot of additional stress and meltdowns on their part (totally warranted mind you!)

So instead I focused on the trailer and creating a sanctuary for the kids and I to have. For a place to make memories for years to come as we adventure together, because the alternative wasn’t something I could afford to focus on in such close quarters with them.

With all the additional medical precautions in place for Covid, getting a diagnosis wasn’t as quick as I would like. It took over a week to be able to physically see my doctor, another 2 weeks for the ultrasound, and then a week and a half for inconclusive results. My actual sternum is inflamed and swollen, so I was prescribed an anti-inflammatory for rheumatoid arthritis to see if it helped to decrease the swelling and then an appt with radiology 3 months from now to look at it again. 😦

The idea that I should just sit around and wait 3 more months to see what exactly it is because most medical procedures that aren’t for Covid or for immediately saving one’s life is so disheartening and makes me wonder how many people aren’t getting timely treatment because our government cut funding for hospitals too much for too long and so they can’t handle both right now.

The bright side is that the pain is less with the medication and I think the lump is smaller so fingers crossed it actually is shrinking, and isn’t potentially life-threatening.

Autism; second verse same as the first Lambert: Proud to be a lion amonst sheep ;-) mom life Mommyhood: Fake it till you make it

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Mar 17

Coronavirus Pandemic and Our Emotional Health

by starbursteyes

We live in Ontario, Canada and our premier has officially declared a state of emergency this morning. This means in addition to primary, secondary and post-secondary schools being shut down for the next 3 weeks, now our daycare centers, restaurants (dine in portion), bars, cinemas, libraries, museums, major venues such as the science centre, and recreation centers are all shut down until at least April.

We homeschool our 3, but my two stepdaughters attend public school at their mother’s insistence. So this changes some things for us, but not all things. Obviously daycare facilities being closed doesn’t effect us. However, everything else being closed does.

One of the ways all of these closures effect us is through fear and anxiety. My youngest son has asthma and has had to be on oxygen and nebulizers in the past, so I am in a heightened state of anxiety. But I’m not the only one, my children feel it too. Not just through me, but also because news of the virus is everywhere and both kiddos understand the potential implications for their brother, and he understands the implications for himself. To that end we have been working a great deal with the concepts of fear, anxiety and powerlessness.

Acknowledgement of Emotions:

We’ve spoken about how scary it can be to feel like you’re powerless in a situation, and how to work with that feeling to acknowledge it but not let it overwhelm us (a thing I am struggling with myself as well).

Then, I attempt to teach them how to work through their scary thoughts. We talk about their feelings, how their real and valid first. But also that even though their valid, we don’t have to be ruled by them. We can focus on the things we HAVE done, the things we ARE doing, and the things we CAN do during this time.

Breathing Techniques:

Once I’ve validated their emotions we do breathing exercises. Five deep breathes in through the nose and out through the mouth. This helps to calm the nervous system down and allow the pre-frontal cortex to come back online (center of logic and reasoning).

Mindfulness Exercises:

Mindfulness exercises such as finding 5 things they can see, touch, and hear can also help to refocus on calming the mind enough to work through any scary thoughts.

Positive Actions:

Finally, we focus on something positive, such as on gratitude, love, giving to others, or constructive actions. We do this because in allot of ways our thoughts are like roads, the more frequently their used, the more deeply they become entrenched and at times like this we NEED the positive perhaps more than ever.

For one child, focusing then on how grateful they are for the healthcare professionals or our ability to have things delivered to lessen our chances of exposure is helpful.

For another it’s expressing love through acts of kindness such as offering to play another siblings favorite board game or reading a book to a younger sibling.

For another it’s writing a card to send to someone they can’t see in person right now, or walks in the conservation area to be in nature.

For me, it’s constructive physical acts that help, for example organizing cupboards and labelling jars with our supplies or sorting the kids clothes for donations (I’ll wait to donate, but I’m happy to pop bags of donations in a closet ready to go once this is all over). Each person is unique, so choosing the positive actions that work best for them should be specific to them.

Autism; second verse same as the first homeschooling mom life Mommyhood: Fake it till you make it Pixie Girl: Eyes full of glitter and sunshine

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Apr 9

Dear Mental Health Professionals:

by starbursteyes

dsvm cover

I am aware that the DSVM (all editions since the 3rd) include Autism as a mental illness/disorder. However, just because they are included does not make the mental health field correct in their assessment of Autism as a disorder. It is included because Western society has a serious lack of acceptance of anything different. All things different should be treated and minimized to the greatest degree possible, is often the misguided thinking with Autism and many other neurodiversities.

The Ontario government has released a statement that they are pledging $333 million dollars towards treatment, but that the maximum age for treatments of IBI will decrease to 5 years old. This is said to be because the greatest chance for changing these children is until they are 5 years old. After that, it becomes harder to help change their behaviors to mirror neurotypical behaviors.

Autism is looked upon as something to correct, or at least to help intervene as much as possible and push towards encouraging the person to act as neurotypical as possible. I’d like to ask you why this is? I’d like to ask you why someone has to behave the way you do for you to see value within them? I’d like to ask you why biodiversity in the world is a plus, but neurodiveristy within humankind is not? I’d like to ask you why someone has to live in a predetermined manner for it to be the right way to live? I’d like to ask  you what is so bad about allowing someone else to live their version of a happy life, even, especially if it’s not the same definition of happy as yours? I’d like to ask you what will it take for you to see that my sons do not have a disorder, they have a different neurological structure. What are the words you need to hear to understand that their value is not to be based upon how well they can become chameleons in society, but that their value is based upon the person they truly are when they stop trying to fit into your rigid, substandard predetermined cookie cutter shape of humanity…The Autistic Person they always have been and always will be does not need to be fixed, they just need to be loved, respected and appreciated for who they are, just like every other living creature on this biologically diverse planet.

Autism; second verse same as the first Lambert: Proud to be a lion amonst sheep ;-)

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Mar 19

Our new version of “normal”

by starbursteyes

I sit here typing while he sleeps beside me. We’re at home now, but the watching never truly stops. I’ve been watching him so carefully for 3 days now. Watching his chest expand and contract with every breathe. Watching to see if there’s still a tug at his trachea from struggling to breathe. Watching as he cries in fear for me while I hold him during treatments. Watching him wake startled and shake as different alarms and announcements pull him from sleep time and time again. But I also watch as he sings the Spiderman theme song with the amazing nurse and paramedics. And I watch him smile at me and tell me he loves it in the hospital because he gets to have me all to himself, and be so excited to see his dad, nana, siblings, auntie and uncle (even though his siblings means he has to “share” me again lol)

The doctors say he has Asthma. It’s what filled his right lung with striations of fluid and made it so difficult for him to breathe. He’s to be on inhalers every day for the next 6 weeks at least, and another inhaler whenever he’s struggling to breathe. We have an “action plan” for if/when he gets an attack again, including if it’s like this one or worse. We now have a doctor that will be following him until adulthood specifically for his Asthma. And I have one more thing to watch him for, one more medicine to carry, one more fear in my heart.

When I’ve heard the word Asthma before I didn’t realize it was a big deal, I didn’t know you could die from an attack. I blame my mother for that lol. She has asthma and as a little girl she told me all sorts of things so I wouldn’t worry. Like that if she was really sick from it the worst that could happen is she’d pass out and her lungs would “re-start” themselves. She told me that as long as she had an inhaler she’d never get really bad. As I grew older I never thought to question the comforting things she’d told me. I never thought to look deeper or to even examine what she’d told me with my own knowledge of anatomy and physiology. Instead I held onto her answers because it meant she was always going to be okay. That was and to be truthful still is something I desperately need to believe in. Only now I need to know the truth about asthma. I need to know that it can be fatal, and it can be difficult to control. It can also be managed, and (for some children at least) can be something that is outgrown eventually.

The morning he was admitted to the hospital I had already used ventolin and it hadn’t helped him at all. His attacks may not always be able to be controlled by simply using an inhaler. We might be visiting the pediatrics ward again. So with this knowledge I am altering our version of normal. It now includes inhalers, actions plans, respiratory therapists, an additional doctor for his healthcare team and possibly an O2 saturation monitor for at home to check his levels if I see him struggling to assess better if we should drive him to the hospital or if we need to call for an ambulance instead. But it will still include trips to the library and Airzone, unbirthday parties and fakey doodle restaurant nights. It will still include swimming lessons and songs, visits with friends and random adventures. Through it all, as always it will include love and an ever watchful momma who’s added one more thing to always watch for.

Autism; second verse same as the first

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Mar 4

Dressing Board

by starbursteyes

Mr.N has an Occupational Therapist due to his fine motor skill delays. One of the tools she has been using with him is a dressing board to help him learn to do and undo buttons. I of course fully believe in homework 😉 and so I created this:

CAM02895

Below is how I did it for those that want to make one themselves:

First the supplies:
1 art canvas (any size, but you’ll need enough material to wrap it like a present. Not that I did that, but it made sure there was enough of the fabric I wanted to use)

Fabric (Fleece doesn’t fray so it’s great for the no-sew way of doing it, I simply used some left over fabric from bean bags I had made him previously)

Buttons (the larger the better to start with, you can always make more boards with smaller buttons as they progress)

Thread (to sew the buttons on)

Needle

1 Permanent Marker

Scissors

Staple Gun

CAM02888

(I was making multiple, hence the multiple supplies)

Place fabric along the back of the art canvas (near the wood) and staple it onto the back wooden frame of one side.

Wrap it around to the front and make sure it goes 2/3 across the canvas, and trim accordingly.

Repeat with other side, making sure there is a fair bit of overlap as you want it to be a bit roomy once the buttons are done up for ease of use in the beginning.

CAM02890

Then place buttons on the side you want as the inside and sew on with the needle and thread.

Place top fabric over buttons and cut button holes in the top fabric.

Write an inspirational message on the canvas for them to discover upon opening the buttons. (Ours says “You did it! Great Job!)

You’re finished! Minimal sewing (just the buttons) and minimal cost and yet you now have your very own dressing board for practising at home!!!

I apologize to those that know how to sew or are looking for specific dimensions or patterns. This was done free hand (and yes I did sew the fabric edges of mine but that is because I didn’t use fleece, I was using leftover fabrics from my stash) and I wanted to keep it as simple as possible for those that maybe don’t consider themselves “crafty” but still wanted to make something like this for their child. If you make one, I’d love to see it, please post a picture in the comments section 😀

Autism; second verse same as the first

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Nov 4

Teenage Mutant Ninja Turtles

by starbursteyes

tmnt

I have agreed to speak at a local event called “The Heart of Ajax” this coming Wednesday. The really cool part is I’ll be speaking with a bunch of youths from all over the town of Ajax who will then devise a plan to take back to their school that will do one of the following: Raise awareness, Teach other kids how to be an Ally, Raise funds for an organization or in some form bring about positive change and positive impact in the lives of others. I was asked to speak about mental health, the stigma surrounding mental health and how to be an ally to those not classified as neurotypical.

I have thought extensively on what I wanted to say. I have started a dozen speeches, and threw each one away. Then tonight as I watched my son gently lean in to kiss his sleeping cousin’s forehead I saw her wall decals. She adores Teenage Mutant Ninja Turtles (TMNT) and I knew right then what I was going to talk about.

I hate TMNT. I hate what they remind me of. When I was in Grade 5 there was a boy in my grade who loved TMNT. we’ll call him “Shawn”. He would talk about them every single recess, and lunch hour. It didn’t matter if other kids really paid attention our not, this boy would still talk about them. See he didn’t really catch social cues all that well. He wore clothes a bit different from the rest of the boys my age, instead of jeans he only wore sweat pants, and his shoes had Velcro instead of laces. He would go into a special room with a special teacher than none of us had seen before for allot of his day. He didn’t always brush his teeth, enough so that the other kids really noticed the build up on his teeth at times. He was never mean to anyone. He would smile and say hi to everyone every day. For quite awhile, the first few months at least he tried to play with the other kids at our school. Every recess, and every lunch hour he’d try to insinuate himself into our games and our conversations. Most often his addition our conversations was to change the subject to TMNT. There was a girl in my class who was not very nice to allot of kids. She was especially mean with this boy. She would laugh at him and make fun of him and purposely exclude him from games and interactions on the school playground.

I never said anything mean to him. I never really said anything at all to him. I never stood up for this boy. I never tried to be a friend to him. I stayed silent when he was being slighted or shunned or made fun of. 22 years later I still have a lump in my chest when I think of him. I still feel bad that I wasn’t strong enough to stand up for him. I didn’t know why he was different. I didn’t understand it. I didn’t understand him. Do I know what his official diagnosis was, no I don’t. In part because we didn’t talk about that stuff back then. We didn’t get presentations or custom made books in our classroom to explain why someone was a bit different, and that we should accept them as they are. We didn’t have Autism Awareness Day or many of the other Awareness Days we now have for mental health/neurological diagnosis’s. But those are just excuses I tell myself when I look at my two sons. Pat answers for why I wasn’t the type of person I now want other children to be towards my own Autistic boys. The truth is, acceptance is taught. Acceptance is learnt, through being open, through conversations and presentations and through real life moments with someone who only wants to talk about TMNT.

My goal is to help these kids see how to be better than I was at their age. My goal is to help them develop their own school’s plan for increasing awareness of, and acceptance of persons with, various diagnosis’s. I want for the “Shawn’s” of the world to be invited to a birthday party when the entire class is given invites. I want their additions to conversations to be valued, even if they’re not agreed with I want them to feel like their peers are listening when they speak. I want for these kids I’ll speak with tomorrow to learn and in turn to teach others how to be an ally to those different from themselves. And maybe even to be open to the possibility of friendship with people with all different neural structures.

That is why I hate TMNT, because they remind me of when I failed at being an Ally. I failed at being open to someone different than myself. That is why I also love TMNT, because they remind me to be better, to be the type of person I would want in my own child’s life.

P.S “Shawn” I doubt you’ll ever read this, but if you do: I really am sorry.

Autism; second verse same as the first Lambert: Proud to be a lion amonst sheep ;-) Secret Garden

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Apr 8

#HAWMC Day 7: Why I write about Autism

by starbursteyes

#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.

images

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.

#HAWMC Autism; second verse same as the first Lambert: Proud to be a lion amonst sheep ;-)

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Mar 12

Dear Parent of an Autistic Child

by starbursteyes

I was recently asked what advice would I tell a parent of child recently diagnosed with Autism, while each person is unique and each set of circumstances are different this is what I would have liked to have known when my eldest was first diagnosed:

Dear Parent of an Autistic Child,

You have just been told that your child is autistic, and I’m sure you have a great deal of questions swirling around in your mind. Some might be questions such as: What exactly does this mean for your child? How will you tell others? Will your child be accepted by their peers? How can you best help your child to thrive and grow? What types of treatments should you utilize for your child? And so on, and so on…

I don’t have all of the answers, in fact no one does, not even the specialists and doctors have them. The only person with the best chance of having most of the answers is you. I know you probably don’t feel that way right now, but it’s the truth. No one will know your child better than you, no one will love your child the way that you do, and no one will be as devoted to their wellbeing and happiness as you are.

Research all you can about Autism, learn everything you can about what it really is. The more you understand about Autism the more you can make informed decisions about what is truly best for your child. If a type of treatment or medication or anything gives you a bad feeling, respect your intuition as your child’s parent! Just because _____ worked for so and so doesn’t mean it’s right for your child, and that’s okay. Remember that each person is unique, there is no one single way to parent!

There will be days that are beyond hard, they will stretch you to your mental and emotional limits and beyond until you feel like just breathing is a struggle. The catch to that is that it isn’t because your child has Autism that times will be difficult, it’s because you’re a parent in general now. Each parent will face challenges they aren’t sure how to overcome, each parent will struggle to know and do what is best for their child, that’s just a part of parenting. There will also be moments of such great joy that you will wonder if your heart is going to burst from them.

Above all remember that your child is just that; your child. They are still the same child that you held and cuddled and loved before their diagnosis. They are still capable of a full life filled with happiness if they are just given the right tools and opportunities. At it’s core, that is what parenting is about; loving your child unconditionally and giving your child the specific tools and opportunities they specifically need to create the life they find personally fulfilling.

Sincerely,

A Mother of 2 Autistic Sons

Autism; second verse same as the first Mommyhood: Fake it till you make it

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Jan 19

Blurry Pictures and Clear Signs

by starbursteyes

CAM01152  I read another’s blog post today. It can be found here. What I got from it was that it was about his fears for his Autistic daughter’s future after watching two girls from the same grade not even notice her during a morning walk. As well as his hopes for his daughter’s future after attending a dinner filled with Autistic young adults.

It struck a cord with me because there are moments when I worry for my boys. I worry sometimes as I watch other children surpass them socially, I worry as I see news reports of an 11 year old Autistic girl who didn’t respond being tasered by police when found walking nude along a free-way. (Full story found here) I worry when I think of the only time Mr. C was in school (preschool) and his teacher told him he wasn’t good, that he was lacking and so many other things that tore at his fragile self-esteem which lead me to taking him out of there and choosing homeschooling instead because I didn’t want to risk him having more teachers like that. I worry when I start to think of the world as it is right now in regards to acceptance and the lip service that is often given, but real efforts not.

I was still thinking of it when I was getting Mr. N out of the bath (juice, play-doh, and stickers make one huge mess lol) as I closed the bathroom door behind us, for the first time he noticed something I’d forgotten was there; a blue index card I’d written that says “You are perfect exactly as you are” Originally I’d written it and put it on the outside of the bathroom door for the 3 children quickly getting older and noticing the media’s messages about superficial images. But he pointed at it and asked what it said. I read it to him and he smiled and said “Awe” and I asked him who it was about, he told me me it was about him, that it was his… He was right. He IS perfect exactly as he is, all of my children are, and instead of being worried about their future I’m more determined than  ever to ensure I help to change the world’s perception of Autism so that people will be more open to truly seeing them. To talk and write and do whatever it takes to help create the world I want for them, one where they and others are valued as they are, one where diversity is embraced, one where others see the value they can bring to a friendship and try to cultivate them, one that sees my boys and all people as perfect exactly as they are.

 

Autism; second verse same as the first Lambert: Proud to be a lion amonst sheep ;-)

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Jan 1

New Year’s Resolutions

by starbursteyes

 I know that commonly here in Canada many people make New Year’s Resolutions, and a great deal of them are self improvement ones. I admit mine is no different.

My one and only resolution this year is to learn sign language so that I can fully communicate with my amazing niece 🙂 She’s 4 years old and sign language is becoming a big part of how she now communicates. I already know some signs from using it with Mr. C,  I’ve been using some with Mr. N since he was tiny as well, and with Miss. G not really speaking much yet, I find it very useful with her as well. But I want to learn more than “just some” I don’t want to “get by” I want to have full conversations with Miss. F as well as my own wee ones using sign language as I will be teaching them what I learn so they too can communicate with their cousin as well.

 

Autism; second verse same as the first

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