Behind starburst eyes

Corona’s Effect on Mental Health

It’s been months since Covid-19 became a worldwide epidemic, and while I am truly, deeply thankful that my family has not experienced this virus directly, sadly it still has had an impact on my children through their mental health.

He used to be gregarious, he used to be fearless, he used to be happy and confident…Used to be…

It makes my heart ache to see the changes in him, to see how scared he is to even leave the house because as he puts it “It’s invisible, I can’t see it, I can’t fight it” He used to be thrilled to pop over to the store for me, and he’d always ask if he could pick up something for dessert for everyone in addition to the bread or milk I was usually asking for. Now, his first response is “Or I could not go” with a pleading face as he says it. He used to love going for runs, now he says “there’s too many people”. He would rather forgo takeout or new toys if he has to go outside for them.

So instead I don’t ask him to go for me, but I do ask him to go with me. I’m willing to walk with him, because I’m determined to make him go out (while of course allowing precautions such as a mask and hand sanitizer) because he can’t stay locked inside for the next however long. It’s not healthy for him.

I know this might be a long road for him, but I remember when he was 2 and would have uncontrollable meltdowns when we’d walk different routes home from Airzone, he’d cry that it “wasn’t the right way home”. Back then I knew he had to learn there were many ways to get to somewhere, physically and metaphorically. I would hold him and tell him over and over he was loved and safe and I understood and he was my wonderful brave boy as he cried for hours even after we got home.

This is no different, I’ll be there each step of the way offering him love and support as I help him walk this hard path. I love him enough to do the hard things because he always has been and always will be worth the effort to help him thrive.

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There’s Always A Reason

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.

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Why I don’t often write about my sons anymore…

When I first started this blog, I would write quite frequently about my children. I thought that by giving others a glimpse into the world of Autistic children, and the parenting of, that it would help. That it could show the world what our lives were like; both the positive as well as the struggles.

There is a difference though between when a parent of a neurotypical child writes about parenting, and a parent of a special needs child writes about parenting. I didn’t realize that when I first started writing. I didn’t realize that far too often the media utilizes those same struggles to suggest that a parent of an Autistic child should be pitied. Mostly I didn’t realize it, because I don’t pity myself.

I see myself as having been gifted 3 beautiful souls to guide towards their fullest potential. I see myself as a kind of tour guide. I’m only here to help till they themselves feel less like tourists and more like locals. The thing is, I thought that was what all parents have to do.

I have never been a mother to a neurotypical child, so maybe it’s totally different? But from what I have heard, it’s still hard as hell to be a mom; regardless of a child’s neurobiology.

So why is it that having a rough moment or day or even a totally rotten week is viewed so differently when the child is classified as special needs? It’s different because we view having a child with a different neurobiology as something bad, as something to grieve and be depressed about. Only I’ve never felt that way about my kids.

So when I write, I have to consider what kind of impression am I adding to society of the reality of having an Autistic child. I don’t want to add to the gross misconception that they are less for having a different neurology; because, they aren’t. The society that equates how much money a person can contribute to corporations (through working at, or purchasing from) as a human being’s only worth is what should be pitied, and seen as less than; not my beautiful children.   

 

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#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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Dear Parent of an Autistic Child

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

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Blurry Pictures and Clear Signs

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.

 

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Autism Speaks Needs to be Silent!

HomeFor those of you that haven’t read it yet here is a link to the press release that Autism Speaks released on November 11th 2013 about their summit being held from Nov.12-14: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

While I am a Canadian, what is happening in the United States in regards to organizations like Autism Speaks effects us all. Why? Because of lines like: “We’ve let families split up, go broke and struggle through their days and years.” Actually, my husband and I are more in love now than ever, but thanks for assuming that we’ll get divorced because we have 2 Autistic sons! Our mutual dislike of washing dishes causes more issues for the both of us than our sons being Autistic. Seriously, literately, it’s true.  Go broke? Yes in the United States many forms of therapy are not covered or are so difficult to get covered that most families can’t access them in timely manners. Instead of using their funds for warning us that we’ll get divorced because our kids have different neuro-pathways, why not use those funds to provide grants for such therapies or to subsidize actual places that provide those therapies on a sliding scale payment plan based on proof of income and expenses? I have a secret to tell you, one that apparently has been forgotten by these people: parenting is HARD! I know, it’s a shock isn’t it? Being on call 24/7 for a minimum of 18 years, putting someone else’s needs and wants above your own every single day, figuring out how best to help a unique individual become the best person they can be and then following through even when it’s hard and your tired or sick or whatever isn’t easy. Guess what, that’s what every single parent out there is supposed to be doing anyways, regardless of the neuro-pathway configuration of their child!

“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.”

Try to escape or hurt themselves, yes those two are scary and both are things I’ve had experience in dealing with my own son, but seriously, climbing the furniture? Stripping off their clothes? Raiding the refrigerator? Those are “horrors”? Are you kidding me!!! Just this morning my neuro-typical daughter decided that a 10kg bag of flour needed to be dumped all over the kitchen, and I mean ALL OVER while I was in the bathroom. Did my eldest son have a issue with climbing the furniture? He sure did, so did his neuro-typical friend. I simply took him rock climbing to give him the same stimulation in a socially acceptable manner. Stripping off their clothes? Have you ever met a child that wanted to keep their clothes on? Do we as adults not relish the days we can have pajama days? The reason is simple, it’s more comfortable. If keeping clothing on is an issue, why not work out what fabrics the child enjoys the touch of and sew some clothes for the child? If one doesn’t have the time or knowledge of how to make clothes that’s okay, there are plenty of seamstresses that can be hired to do it for you. OR if short on funds and a seamstress is too expensive, why not contact a local high school and work out with the home ec. or fashion teacher (or whatever it’s being called currently) that some of the sewing projects done by the students are clothes for the child/ren in question?  Again there are TONS of solutions if you’re willing to look for them, and as a parent that is what your supposed to do: HELP your child to thrive! And there are plenty of parents of Autistic children that do exactly that, every single day! To say that we are existing but not living is utter horse manure!!!

My entire world is better because of my children! Each one is perfect exactly as they are. If I were to be offered “a way to eradicate their Autism” I’d refuse, wildly, passionately, whole-heartedly refuse! Why, because to do so would be to kill the child I have and replace them with someone else. I don’t want different children. I want the ones I’ve been blessed with.

I want my C exactly as he is, my bugaboo.  Who turns notes into movements so fluid and sure they bring tears to my eyes. Who runs as fast as he can, trampling anything in his way to get to his siblings when they cry. Who tucks his chin into himself, as his lashes lower and his lips turn up every time he says “Thank-you” when I tell him I’m so proud of the young man he’s becoming. Who sings offkey when listening to Green Day. The boy that looks at me with liquid pain running down his face when he’s gone past his limits and it hurts more than he thinks he can bear to be so overloaded, the boy that doesn’t always understand social settings or skills and still whispers in my ear “Is that a joke mum?” when he’s not sure about what someone said. The boy that first taught me what it was like to love unconditionally.  The boy that first taught me how to be a warrior that fights relentlessly: FOR him.

I want my N exactly as he is, my turkey. (He was born on Thanksgiving) Who looks at me while trick or treating and says “You fix everything” Who loves glitter paint, and awkwardly sticks his face in his brother’s and tries to ask him why he’s crying when C is upset. The one that loves Lightening McQueen anything. Who meticulously peels every wrapper from every crayon in the house. Who only just started to be able to deal with receiving kisses sometimes when not in the peaceful repose of sleep. Who isn’t potty trained at 3 years old, and who won’t be for an unforseen time. The boy that taught me true patience. The one that showed me that just because it’s not reciprocated in the ways I was used to didn’t mean love doesn’t exist, and to accept the ways he was comfortable expressing his love.

Both my sons are perfect, exactly as they are. As is my daughter. All three provide different parenting challenges, and all three provide moments of joy so great I look around to see if the very air around us is sparkling as bright as my heart from it all. So don’t EVER tell me I’m only existing! Don’t ever tell me that my children are a burden that I must bear! For the REAL burden is the knowledge that organizations such as Autism Speaks is held in high esteem by so many. The REAL burden is not my children, but your malignant lies and misinformation spreading like a cancer throughout our society, diminishing the ability of others to see the gifts I have been given in the shape of 2 sons.

“How long before they break?” Seriously!? I will NEVER be broken because of sons. Actually, I have been already. The mold of the selfish maiden I once was prior to my eldest son’s first breaths has been broken. In her place is a mother. A woman of untold strength, given to her through the transformation into motherhood. A woman who knows how blessed she is to be the guide to 2 such incredible individuals on their journeys in this lifetime. A woman of sharp enough mind to see past your “we feel SO bad for those stuck with such a terrible fate as being a parent to an Autistic child” to the reality that you don’t know a damn thing about MY sons. YOU are blind to the beauty of their existence, and by direct extension, the beauty of MY existence because of them. A woman of strong enough character (or just plain loud 😉 to openly state: Autism Speaks NEEDS to be SILENT!!!

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9 Years Ago

9 years ago today my entire world changed as my eldest son drew his first breath.

To try and capture the awe I have felt all these years watching him grow, watching the changes in him is as difficult as capturing the sun’s warmth in words. It alters everything, gives new life and vision to the world and so did my son’s birth for me.

I changed the day he was born, in ways that I am still learning, and realizing. He painted flames across my belly, they look like they encircle my belly button and rise up to my heart. Each one is a mark from the precious moments I carried his body within my own, safe from the world, wrapped within my body, cradled by my energy, and lulled by my heart that from then on would beat because of him. He (and his siblings) are my world.

His birth was beautiful, I was surrounded by love, peace and support from the womenfolk closest to my heart. My mother held her first grandchild moments after he was born. My best friend since childhood was there with me throughout the entire thing, just as we’d been together through many major changes in our lives. A dear friend of my mother and I sang songs of welcome to my son and you could physically feel her joy emanating from her very being. As she held him I finally rested after 2 days of labor, wrapped in my own mother’s arms as she offered her own strength to me. A gift I have called upon many a times since that day to help guide me through the waters of motherhood.

Already I see the foreshadowings of the man he’ll be, it whispers from the crook of his smile sometimes, it glints in his eyes as he watches over his brother playing in the fading golden light of early evening, it floats upon his shoulders as stands up for what his heart and mind say are the right choices. He is a good boy, and he’s on this way to becoming a good man. The last 9 years have passed ever so fast, and I know the next 9 will as well. So I shall do my best to stay firmly planted within each moment with him, to relish in the now as the now is so precious in part due to it’s very fleeting nature.

Happy Birthday C, you’re my dude, always and forever    

 

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Fantasy Hair Colors

I understood that upon becoming a mother that I would most likely do things I’d never imagined prior to motherhood for the sake of my children, having pink hair wasn’t one I expected. I am now used to the looks I receive upon first seeing me with my variety of bright hair colors, ones that are commonly called “fantasy colors” because there is no way that they could ever be natural. My favorite is bright pink, almost a fuchsia really. For years I dyed my hair various shades of Auburn and I loved it the vibrancy of them. (Naturally I’m simply a dark chestnut brown)

When my eldest son was about 3 years old I started taking him to our local library’s pre-school story time program. It was once a week for 45minutes and he loved it. The part he did not love was “pick-up time”, which was when the grown-ups who were to wander the library during it but to stay away from the actual area the kids were in came back to the children’s area for their child. He didn’t like that time because he had trouble with facial recognition skills and would get anxious trying to “find” me in the throng of moms standing in a row waiting for our kids. I tried to figure out what to do to help him as he couldn’t just quickly scan the area with his eyes and spot me. It would take him time, enough time that he’d get upset thinking that I wasn’t there. I tried pointing out what I was wearing before we’d go in so he could look for a certain color of shirt or whatnot, but that did not work. I tried making sure I was at the beginning of the line, but then he’d start looking at the end first those days and vice versa, I tried calling for him from the moment he started looking, but still he wasn’t sure where my voice was coming from as he’d already be nervous…And that is how my fantasy hair colors started. I dyed my hair a brilliant fuchsia and of course I was the only adult with such hair color at our little library and so it was very easy for him to glance for the hair color and then take the few seconds he needed to verify my face in his mind. The nervousness on his part stopped, and overall it was much happier and better for him as he could be excited about the library program (which he LOVED) and still feel safe and secure that he could find me when he wanted too.

His facial recognition has gotten much better over the years, to the point that I don’t need to dye my hair anymore for his sake. My younger son also associates the fantasy hair colors with me though, to the point that he automatically assumes when seeing them on someone else that they are me, and will try to follow them if I’m not with him calling out “momma”. Once he’s able to recognize my face immediately, and does not need the visual cue of a unique hair color will I stop dying my hair? No, probably not. I started doing it to help my eldest, and eventually my youngest as well, but over the years ironically enough I too have started to associate those hair colors with me.

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Come hell, high water or $5,000 fines the kids were having a lemonade stand for Sick Kids Hospital

For the last 3 years my wee ones have had a lemonade stand on Canada Day. They make lemonade, cookies, jam, and candles and sell them to raise money for Sick Kids Hospital. This year’s experience was NOT what I’d hoped for them.

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It started great, we put up signs, made strawberry lemonade with strawberries we’d picked as a family at a local farm (Pingles) made original lemonade, each child got to take a turn at squeezing lemons into the pitcher. We made gluten-free cookies the night before. They helped to make jam a few days ago from the strawberries we’d picked together on Summer Solstice. I guided them on making star-shaped candles which they did with great pride and excitement and used the broken bits from their little brother’s crayons to color each one. We ran around the neighborhood and they would watch the lights for me from the corners of various streets as I would dash across the cross walks writing with sidewalk chalk across the entire thing “Lemonade Stand 4 Sick Kids Hospital” and an arrow pointing towards our home. Each child would excitedly want to be the one to pour the lemonade when a customer came, or to offer the cookie that was free with each cup.
Starting at about 1pm my son was waving a sign 4 houses down the street at the cross walk of the highway and our street and yelling “Lemonade Stand, all the money goes to Sick Kids Hospital” as cars drove by. A woman who lived across the street from where he was standing came out and told him to stop. She was not nice about it, he came back almost in tears. My brother came by to help support the kids in their endeavour was NOT happy that C was yelled at for trying to raise money for charity. So he stood at the corner with hin while my son did his best to convince every person that went by that they should buy a glass of lemonade to help out a charity that is VERY near and dear to our family.

The lady came out again and yelled again about them stopping, my brother told her that his nephew was allowed to try to help a charity and that he wasn’t harming anyone. She eventually came BACK out AGAIN and tried to give C $5 to go away. He told her “No thanks, I don’t want your money, I just want to keep doing my thing for Sick Kids” She was determined that he take it, and he was determined that he wasn’t going too. Finally, he told her “I’ll take it for Sick Kids, but I’m not going to stop, I want people to come to our lemonade stand so we can give lots of money to them”

My brother had to go so he walked C back to me, and I walked him back to the corner. This is where things got really crappy. A police car slowed down and stopped just past us. The lady had called the cops to force us to stop. As soon as I saw the police cruiser stop I told C to go back to the lemonade stand. The police officer asked a few questions and then told me he was sorry but that he had to ask us to stop as we were causing a disturbance and we didn’t have a vendors permit to run a lemonade stand. I walked back to our front yard to talk with my husband and saw that C was in tears. He was afraid that I was going to be arrested and that he’d lose his mom. I assured him that while the police officer was well within his rights to fine me but that he couldn’t take me to jail.

I then took the sign from my husband and started to walk back to the corner again. My husband asked me why I was doing it and I told him the truth “How can we teach our children to stand up for what is right and to stand strong in their convictions if we cow down instead of standing up for our own personal convictions. My conviction is that what the kids are doing is RIGHT and that they should be allowed to try to help out a charity. I will NOT back down, I will stand up for their right to be kids, to be good people, and to try their best to do good deeds. If they want to call the cops back again than so be it, I’ll pay the fines because standing behind my convictions is more important that being popular or the money it might cost us. They are worth it, the kids knowing no matter what that I support them is worth it!”

I then proceeded to yell at the very top of my momma lungs “Lemonade Stand for Sick Kids Hospital” while waving the sign at the corner for 45 more minutes, until it started to rain.
Stubborn? Yes! But wrong of me? NOPE If I don’t show them that their beliefs are important, that they are important, that I respect their efforts and that I WILL stand behind them come hell, high water or police officers with fines then how can I expect to raise adults that will be honorable, and strong enough to stand up for what they believe no matter what? How can I teach them to root themselves strong in Mother Earth and stand tall no matter the storm for whatever they believe in.

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