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.

Leave a comment »

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.

Leave a comment »

NOT leaving on a jet plane

Awhile back I stated I wanted to take a figurative big leap, and I did, well I started too…I bought 5 plane tickets to Portugal, and then plane or bus tickets to 15 more countries for a trip spanning 4 months. I researched different places, museums, historical sites, UNESCO World Heritage sites, different travel sites innumerable “top 10 places/things to do” downloaded walking tour apps, street and local transit maps for each place we’d go to, and booked places for us to stay. I was SO excited!

Then Covid-19 struck the world 😦 As of writing this over 100,000 people have lost their lives to this pandemic…I can’t even begin to express my sorrow for the families of those who have passed from it.

Over the past two months our family has attempted to adjust and get through this time of uncertainty, fear and social distancing. It hasn’t always been easy or pretty. I chose an apartment because I didn’t want to pay more for a house with a big backyard when “the world was our backyard”. Instead we went and did all sorts of things, played at parks, used our local libraries, went on nature walks at conservations, and so on. But for many weeks now all of those options have been closed to all residents of our province (as they are in many countries worldwide).

Slowly the cancellation emails came from the airlines, only 2 flights have received refunds, the rest are credits for future travel. While there have been many messages back and forth for various Airbnb stays 3/4 of the reservations have been refunded to us, and I’m still attempting to receive the rest at least as credits.

So now what? Our grand adventure has been put on hold for an indefinite period of time, and we’re in an apt with no backyard of our own for the kids to run around in.

Well now a new adventure begins, because I can curl up and cry about our cancelled plans (okay I might have already done that a time or 2) or I can do something else. Stay tuned dear readers for my next wild plan!

Leave a comment »

Coronavirus Pandemic and Our Emotional Health

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.

Leave a comment »

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!!!

Leave a comment »

A borrowed MP3 player, sparkling floors, and a heavy heart

N woke up at 4:56 this morning, I tried to explain it was still night time as it was dark out, but to no avail. He was adamant that it was time to start our day, so start it we did. I figured at least it would give me extra time to get a head start on cleaning the house cause what house with children doesn’t always need cleaning? 😉 To that end, I personally hate cleaning, but accept it needs to be done and find that music helps me to mind doing it less. Only it was 5 o’clock in the morning, I was still very tired and couldn’t remember where I’d put my MP3. So noticing my eldest son’s MP3, I thought “ah-ha! Problem solved” and I borrowed his.

About 30 minutes into cleaning a song came on and made me freeze as the lyrics touched nerves within my heart more sensitive than I’d ever imagined them to be. If I’d heard this song on the radio it most likely wouldn’t have enthralled me the way that it did. But this wasn’t the radio, this was my son’s MP3, so this was a song he had specifically chosen because it resonated with him. The song was “Let Me Be Myself” By: 3 Doors Down. And as I was mopping my kitchen floor I felt a part of my heart shatter all over those shiny tiles.

I’ll share the lyrics here for those that haven’t heard it before”

I guess I just got lost being someone else

I tried to kill the pain, nothing ever helped

I left myself behind somewhere along the way

Hoping to come back around to find myself someday

Lately I’m so tired of waiting for you to say it’s okay

But tell me please, would you one time just let me be myself?

So I can shine with my own light, let me be myself,

Would you let me be myself?

I’ll never find my heart behind someone else

I’ll never see the light of day living in this cell

It’s time to make my way into the world I knew

And then take back all of these times that I gave into you

But lately I’m so tired of waiting for you to say that it’s okay

Tell me please, would you one time let me by myself?

So I can shine with my own light, let me be myself

For a while, if you don’t mind, let me be myself

So I can shine with my own light, let me be myself.

That’s all I’ve ever wanted from this world is to let me be me.

Please would you one time let me be myself?

So I can shine with my own light, let me be myself

Please would you one time let me be myself?

So I can shine with my own light, let me be myself

For a while, if you don’t mind, let me be myself

So I can shine with my own light, let me be myself!

Would you one time, ooh, let me be myself and let me be me?

 

It hurt to hear those words sung in my ears. It made me insecure and scared. Did he feel like he wasn’t able to be himself? Did he feel that he was constantly forced to pretend to be someone he wasn’t? Where do we draw the line between helping them to understand “socially acceptable” behavior and being their real, true, authentic selves? Did he feel that I did not allow him to shine with his own light? In my quest to help him thrive socially because I assumed that was what everyone wanted (him included) did I push him into being someone he wasn’t just so he’d be more accepted by his peers? Did I make him feel like he wouldn’t be accepted as his authentic self? The question swirled as I mopped ferociously, as if I could scrub away the doubts that perhaps in trying my best to help him, I was making him believe he was stuck in a prison of falsehoods and fake social graces that felt as unreal as the old white and red makeup clowns used to wear at the turn of the century. But once the floor was sparkling, my heart and mind were still heavy with doubt. I waited anxiously for the time when I could finally pick him up from the sleepover he was on at a friend’s house so I could ask him.

 

One of the huge things I have always promised and required in return is complete honesty between C and I. Even if it’s not pretty, that’s okay the truth can be said with love and gentleness, but it needs to be the truth. “For trust is born of truthful words and nurtured with honorable actions.” Finally we were just us two picking up paint at the store and I was able to ask him. This mere boy of 9 (and a half) sounded so world weary as he answered me.

“It’s not you mom, I know you’ll love me no matter what and that if I do something like say want to paint my nails with your sparkly red nail polish or wear a costume for daytime clothes when it’s not Halloween that you’ll stand beside me. Cause you’re awesome like that. But as I’m getting bigger it’s sometimes more confusing how I’m supposed to act, what other people expect from me. And I know you tell me to be a Lion and not a sheep, and that I’m supposed to follow my heart and do what I feel is right for me. But sometimes those things get me picked on or laughed at, and I don’t like it. I want to be my real self, but my real self isn’t always accepted by others, and I know you say that no one in the world is liked by everyone but I can’t help that I want to liked by other kids my age. But it’s hard cause sometimes for them to like me I feel like I have to be fake. I listen to the song and it makes me feel like someone else feels the same, so I’m not alone.”

 

We talked some more, but it was hard to hear how society makes him feel like he can’t be himself and be accepted. I’m sure there are SO many other people out there that feel the same way, perhaps it’s a rite of passage as children get older, but he’s my eldest, so this is the first time I’ve had to sit wringing my hands at a situation I can’t fix, one that I can’t even really get in the middle of and my heart hurts for him.

All I can do is tell my sweet boy this: You are never alone, I will walk beside you knowing what an honor it is to do so every single day of your life. No one can accept the real you if you don’t show them who that is. The ones that don’t, well quite honestly it’s their loss to bear to not have you as a friend. Be true to who you really are and know that the right people will see what a gift your presence can be in their lives. Be my brave lion, and watch as you take your place amongst the other brave souls who dance freely to the beat of their own soul song, who will be your true friends.  

1 Comment »

%d bloggers like this: