April 2017 I shared 30 days in the life of Autism on Facebook and I wanted to share them her
April 1, 2017
April is Autism Awareness Month and I have decided to write a 30 day chronicle and share it with you here on Facebook. My goal is to demystify what it is like living with a teenage boy who has "severe" Autism. Keyan is considered severely Autistic because he needs constant support in day to day life - from getting showered and dressed in the morning to communicating his basic needs with with an iPAD, pointing or making a sound. Over the next month I am opening my heart, my life and my home to those who want to truly understand what it means to live with Autism. I hope you will join me on this journey.
Disclaimer: Autism is a spectrum disorder therefore I must make it clear that my story is my own - it's Keyan's. People with Autism are very different!!! Every individual is unique with his/her strengths and weaknesses.
April 2, 2017
Today is world Autism Awareness Day.
Keyan aka "my BEAR" is unaware of his differences therefore he has no understanding of the significance of this day. It's important for us though - his family!!!
For the most part - I would say 95% of the time Keyan is a happy soul. He moves around the world dictated by others and trusting that everyone has his best interest at heart. He is not aware of the stares/glares given to him by others as he bounces around a store. He simply wants his needs met: a car ride (he LOVES the car), a yummy snack (even if we haven't paid for it yet), the need to tap/BANG on things (scaring unsuspecting customers) and to go to the bathroom immediately upon entering somewhere new.
I do find comfort in the fact the Keyan doesn't care what you think of him. Unlike higher functioning people with Autism who are painfully aware of their differences - they experience high levels of social anxiety, depression and thoughts of suicide. I once had a student who suffered from all of these things.
More often then not Keyan is hard to handle in public settings but when at home he is relaxed and fulfilled, surrounded by acceptance, love and all of his own things (particularly his spa, indoor swing and iPAD).
Thank you for taking the time to read my chronicle.
aka mama bear
April 3, 2017
People with Autism love routine and predictability because it helps to lessen their anxiety. This morning Keyan woke up at 4am. As per usual we put him on the toilet to pee and gave him his night time medication to help him fall back to sleep. This morning it didn't work because he lay in bed until 6am - never having fallen back to sleep.
Our routine is usually - wake Keyan up at 7:30am for an 8am departure for school (yes he goes to school - A special needs school). As you can see we are very efficient in the morning.
This morning preparation time was 2 hours and that is way too long. Keyan doesn't know what to do with himself so he asks to go into the SPA. I can tell you I have already lost this morning's battle. If I don't let him go we have an hour of tantrums ahead of us. If I let him go then I have obviously screwed up the morning routine! WHY? Because I don't allow him to go into the spa on a school day. Crap - now I am sending the signal to his brain that it is not a school day. I take the chance knowing that the stress that follows - looks like this: my heart palpitating, my blood pressure rising, my body sweating and endless negotitations with God that Keyan will get on the school bus without incident.
After an hour in the spa (yes - for sure my neighbors think we're nuts - from 6:45am-7:45am Keyan is in the SPA). I proceed to dry and dress him for his day. I am holding my breath and praying that he continues to cooperate. Once at the door I help him with his socks, boots, jacket, hat, scarf and mitts. He runs out the door forgetting his back pack. I simply go outside in my flannel PJ's and strap the bag onto his back.
I run back into the house - phew. Relief. He now knows he is going to school. I did it.
Wait a minute mama bear not too quick. He sees Kunal's car in the driveway (Kunal left for Calgary this morning - having taken a cab to the airport) and its usually in the garage. He wants to go for a ride in papa's car. SHIT. Now he begins to vocalize his discontent. He yells and proceeds to hit his thigh (his sign when he is mad).
There goes my day out the window. So I ask him if he wants to stay home but it elevates his confusion. I simply want him to know that I hear, understand and respect that I took a gamble and screwed up his day. I just want to make it right. All he wants now is a ride in one of the family cars.
With my heart pounding and the feeling of desperation. I want to change this situation. My son is now in distress. I send his sister to get him 2 cookies to calm him. It works...he loves his food!!! For a few moments it calms him until the bus comes. Without hesitation he gets on the bus.
For the rest of my day I will wonder how Keyan is doing and hoping he is being a good boy at school.
Thank you for taking the time to read this extremely long post.
Now its time to get dressed for my sanity saver - now I must go out for a RUN.
April 4, 2017
Of course the one day that my boy gets sick I have 2 back to back conferences to give. I can't simply stay home to help make Keyan feel better.
A sincere thank you to my mama bear, Shirley Gordon Burt who came to the rescue by watching Keyan while I head out to work. I appreciate all that you do!!!
This morning both Stephanie Graddon and I were doing our thing - Raising Autism Awareness (part of S.Au.S.' mission) at a lovely little high school in Ste-Catherine, Écoles Des Timoniers. It was Steph's first time presenting and I am super proud of her! She did amazing. She is in trouble now because in going forward I can call upon her to assist me. I am also pretty proud of myself for having done both presentations 100% in French. It's a good feeling to conquer ones fears.
Upon my arrival at home Keyan wanted me to bring him to do what he likes most when he's sick and that is to go for a car ride. It's ironic that the mama bear who hates driving, who is in fact afraid to drive at times (I can't drive on the highway or into the city) and who calls it her "disability" is forced to drive around town in an attempt to make her son feel better. Gotta love the irony. If anyone truly wants to help with Keyan all you have to do is offer to take him for a drive.
This touches upon sensory issues. People with Autism often don't feel the same in their bodies as normal developing people do. They take in too much information causing a sensory overload and are forced to block things out by blocking their ears, humming, rocking, pacing, bouncing etc...
Keyan has a plethora of sensory issues that we have to help him manage on a daily basis. Hence why he loves to be in either the SPA, pool or shower - the water is soothing to him and I assume the sensory overload simply washes away.
So today - on a sick day. Thus far Keyan has taken 4 showers, has been for 1 car ride and is now in the spa (albeit raining the spa is his happy place) and it is only 3pm - at least 5 hours of this day left to go.
To understand more about sensory overload I invite you to watch this video.
April 5, 2017
Keyan is now 13 years old and if it wasn't for his severe Autism he would be able to stay home alone sometimes. Unfortunately I can't even go to the grocery store to pick up a few items without him. Even when he is sick as a dog I am forced to drag him with me. Imagine the cost of babysitting services over his lifetime? Manisha is lovely and watches her brother but it won't be long until she has a job, a boyfriend and a crazy social life forcing us to count on outside help alone. Here is Keyan minutes after going for a car ride. He doesn't know what to do with himself - so he sits.
April 7, 2017
Once upon a time I was organised in all aspects of my life: I had to do list's, schedules, calendars, reminders etc... for the most part I could track it all in my head.
My house was clean - almost pristine. Everything had a place and an order. Never had laundry hanging around or dirty dishes in the sink. Okay I was somewhat OCD.
Then my children were born and along came mommy brain. Forgetfulness slowly crept in - forgetting to pick up an item at the grocery store, not stopping at the mailbox or not ironing my husbands shirt for an important meeting. Small insignificant things would be forgotten but nothing major.
Then summer of 2005 Keyan was diagnosed with Autism and life as I knew it was turned upside down. I walked around as though my head was in a cumulus cloud - always floating never feeling grounded. I prayed a lot that summer - I spoke to my nanny who had passed away and remained hopeful for Keyan's future.
I truly believe that Keyan's diagnosis changed my brain. It's as though my brain shrunk, some memory faded and storage diminished. Over the years I became more forgetful about all aspects of my life. I have struggled for years feeling guilt and shame for things I am unable to do. Then I breathe and remind myself that I am only human. Every night I go to bed I think if I gave my 100% that day then I had nothing else to give. That is how I sleep - until Keyan wakes me up of course.
I truly believe there are moments in our lives that define us and change us forever. For me that summer defined who I am today.....
April 8, 2017
April is Autism Awareness month and I have decided to chronicle my life as a mom to a child with severe Autism. I feel blessed that social media came into my life when it did. At first I didn't want people to know my private life - I wanted everyone to think everything was perfect and fabulous therefore I hid the fact that my child had Autism.
As time went on I felt the need to share as a means to help me cope. I wanted/needed to feel less alone. Once I opened up I felt liberated...I decided to live in my truth.
So many have you have been gracious in your support. I have gotten so many lovely messages throughout the years. From the bottom of my heart thank you so much - I will still need those kind words going forward as I watch children around me graduate from university, move out, get married and have children.
All those things will be constant reminders of Keyan's limitations.
My husband, Kunal is not on social media but I do share with him when we receive kind words of support. Often people tell me I am inspiring and that Keyan is lucky to have me BUT the reality is Keyan is soooooooo lucky to have a papa like Kunal. There is nothing he won't do for his children. When Keyan says jump Kunal says "how high my dear son". Together we are a TEAM and I don't want to mislead you to think
I do this on my own. I couldn't do it without the love, support and patience of Kunal.
That is today's enter. Thank you for having taken the time to read - xox
April 9, 2017
Keyan has 2 sets of wonderful grandparents who to this day help us care for him. They greet him off the bus when I can't be here on time, they make sure they have food he likes, they watch him so we can have a date night or weekend getaway (even a full week of rest every Fall). Whenever we ask they are there to support us the best they can. The sad reality is that we will all get older and need more outside support to care for Keyan. In preparing for our future - 4 years ago I made the heart wrenching decision to sign him up at a RESPITE home. Every month we send Keyan for the day to this respite home so we can have an
Autism free day with Manisha (whatever she wants to do!).
Today is Respite day - it is a day filled with mixed emotions. It suppose to make us feel rested but we are constantly worrying if Keyan is okay. We know they are taking good care of him but we worry that if they don't listen to him he becomes agitated.
Eventually Keyan will have to spend the night there or maybe even a weekend. It's not natural for parents to have to go through this but we have to take care of ourselves in order to take good care of him.
Now I have to get busy in order to keep myself from obsessing over the fact that other people are taking care of my son today.
April 10, 2017
Over the past few months Keyan has become increasingly rigid (it means he doesn't like to break with routine) and has become tougher on mama bear (he doesn't want to listen to me when I ask him to do something).
Tonight is a prime example...papa usually brings him to soccer on Monday nights and because papa has meeting I am forced to bring Keyan to his activity. BOOM he doesn't want to listen to me and refuses to go in. He runs to the play ground in the back of the school yard. I can see him but I know if I approach there will be a battle of the wills.
As I am standing there talking to fellow moms I see one of our wonderful soccer coaches coming in. I ask her if she would try to get Keyan into the gymnasium. She succeeds to talk him into going into the gym. As I see him approach the doors I ask the other moms to hide with me behind a large vehicle so that he doesn't see me. I did an LOL and told the ladies that it was the perfect entry to today's chronicle on Autism.
A sincere thank you to Sabrina - I appreciate you and all you do!
April 11, 2017
There are 3 things Keyan really loves in this world and that is his inside swing (downstairs in the basement), the spa and the car.
When Keyan comes home from school - after eating he is sure to be found enjoying one of these activities.
I figure those reading my chronicles deserve a short entry ever now and again.
April 12, 2017
Warning: Long but worth it!
Autism has brought me on an unimaginable journey. At times I have found myself in a state of utter desperation & loneliness to the total opposite end of the spectrum to a place of complete fulfilment & joy.
When Keyan got diagnosed we had just built our dream home and were weeks away from moving in. Financially we were going to be hit hard with the cost of private therapies (average $90/hour) for Keyan and a bigger mortgage. All that to say it was an extremely stressful time in our loves. I continued to work although it took everything I had to get myself through the school doors.
That is when I discovered running. At first I hated it because I wasn't good at it. The only reason I loved it was because it was the only time I could be by myself...it was a break. It took me 2 years to fall in love with running. After 32 years I had finally found a true passion in life. Thanks to Autism I went from running 10km races, to half marathons, to full marathons to the BOSTON marathon to even dabbling in triathlons. I had discovered a whole new world and LOVED it!!!
I also got to thinking that being a mom to a child with an Autism Spectrum Disorder was not all there was written in the stars for me (and Kunal). Somehow I knew there was more. In 2009 I asked my students at HRHS if they would be interested in volunteering at a run/walk I was organizing on a Sunday morning in April and there overwhelming response was "yes". My students along with a small group of girlfriends are who gave me the courage to organise the first Autism Awareness Run. With only 7 weeks and a zero dollar budget I had nothing to lose. I hustled!!! My goal was simply to raise awareness and in April 2009 that is what I did.
The inaugural run was deemed a success! I knew I had to do it again. After our race in 2010 we raised enough money to start our very first program and every year there was more to follow. In 2011 we officially created S.Au.S. a non-profit organisation who's mission it became to help families living with Autism by raising awareness and providing leisure programs for children who could not function in regular settings. In
October 2015 we opened the doors to a new office (no longer in the basement of my home). I am proud to say that today we have 3 part time employees along with 2 volunteers (in operations) to run the office. We have 4 teachers and 5 shadows to run our seasonal programs: music, dance, soccer, free play and free swim. We have just hired 5 monitors for Camp Oasis. I cannot forget our wonderful Board of Directors who are determined to bring S.Au.S. to the next level (please take a look at our amazing staff on our website: www.s-au-s.org).
I am telling you this because Autism brought me here - to this chronicle - to this story - to this incredible evening where I got to meet one of my idols, Pierre Lavoie. Tonight I was filled with pride, joy, sorrow, inspiration and determination to continue to do the work I do. Pierre is an amazing man full of love, compassion, energy, creativity and hope. He spoke for over 2 hours tonight and I held onto every word.
For those of you who know his story you know what I am talking about and if you don't I beg you to read: https://www.legdpl.com/pierre-lavo…/homme-de-fer-et-de-coeur
Tonight I got to speak to Pierre Lavoie - something I have been dreaming of for a long time. I told him what I do for work (S.Au.S.), why I do it and how it all began. Although every thing he has accomplished is on a grandiose scale I still draw some parallels. I told him we are organising race #9 and he too is on defi #9. Ironic. He was patient, kind and attentive. I got this photo, 2 kisses, a firm hug and the promise that one day he will show up to our run. Now you know I will send him invitations to the AAR until he attends. It was a magical evening and the reason I found myself there is because Autism came into my life.
To Pierre Lavoie a sincere thank you for all that you do.
I hope you enjoyed tonight's entry.
Good Night - xox
April 14, 2017
The sun is shining and it's a long weekend. Out with Keyan for a drive - one of his favourite things. Sad to think he'll never have the ability to drive.
April 15, 2017
In order to get through some of the hard realities of Autism we have to make one another laugh.
When Manisha is at her wits end because Keyan is being a pest I say to her "at least you never have to worry about your friends hanging around with you because they want to date your bro".
Although Keyan is handsome he'll never be the dating kind.
He will forever be a mama's boy!
April 17, 2017
The word Autism has become very well known in today's world because 1 in 68 children is affected by the disorder. The cause is believed to be both genetic and environmental. Researchers have found several genes responsible for the disorder but acknowledge they are far from fully understanding the big picture.
What can we do to help these children and their families? I am always most comfortable when I can speak for myself and from my experience...
People with Autism are visual thinkers - that means they understand best when presented with pictures. Instead of explaining to Keyan using lots of words it is best to speak slowly using key words only. To make him feel more at ease using a visual aid works best to accompany the word. Keyan would you like an apple? Highlight the word apple and show him either a photo of one or a real apple. This is a basic principle that works with all people with Autism from low to high functioning.
Those who are higher functioning may speak more but they still prefer to have visual cues to aid in comprehension. There is a lot going on in an autistic brain and a visual helps to calm them. A visual schedule helps to calm the noise and brings focus to the task at hand. That is why I think the invention of the iPAD is genius - it provides many people with Autism a tool to the outside world - for them to manoeuvre the way they feel most comfortable (at their own speed - following their own desires).
Autism is a spectrum disorder and a very complex one at that therefore when I give conferences I tell the attendees to think of Autism as a rainbow with lots of different heights, depths, colors, simply a vast array of combinations. How beautiful is that - everyone is unique and everyone is different!
I am currently reading "L'autisme expliqué aux non-autistes" written by Brigitte Harrison a well-know Quebeçoise with high functioning Autism. Very similar to Temple Grandin she has helped "normal people" understand Autism. These women are both university educated and have made major contributions to society but not without their own struggles. They are the voice for people with Autism who cannot speak - who cannot express what they live day to day. They are incredible individuals who have contributed so much to the understanding of what it means to have Autism. Both state very clearly that people with Autism are visual thinkers - they are visual learners. If that is true then we need to start speaking their language which is pictures.
I think this fascinating. I often say show me how to write a word because I am "visual". Show me what you mean either using words, pictures or drawings. I do not have Autism but I can connect intimately because
#1. I have sensory issues (explained in a previous post)
#2 I have an anxiety disorder (many people with an ASD have high rates of anxiety)
#3 I am a visual thinker too.
Being a visual thinker is not reserved for people with Autism but it is how they see the world ... in pictures.
I leave you with this today - if you want to help those in your life who have Autism then provide them a visual when you can - it helps them understand better - it calms their brains and removes some of the anxiety they may be experiencing. Think about the way their brain works rather than your own. There is no perfect way of doing this but if we all just try. Pull out your iphone an google a photo. Boom - it can be as simple as that. Next time you are with Keyan and you want to ask him something or direct him then simply pull up a photo on your iphone and watch his reaction.
Small gestures means we are making room for love and acceptance of all kinds of people in this world regardless of where they are on the rainbow (spectrum).
Thank you for reading.
April 18, 2017
There are those precious moments when Keyan stops everything looks me straight in the eyes holding a stare then breaks out into a smile that spans from ear to ear. With his eyes and that smile its as if I can hear him say "I really love you mama". In that moment everything melts away and I am filled with LOVE.
April 19, 2017
Regardless of where I am and what I am doing (from Monday to Friday) for the next 8 years I have to ensure that I am home at 3:45pm!!!! That is when Keyan gets off the bus from school. This is my job, my duty and ultimately my responsibility as mom to a son with severe Autism. Keyan cannot simply be dropped off at home by the bus driver. He has to be greeted by a responsible adult.
Even if Keyan had to be left alone he doesn't know how to operate the coded door lock on the house. If the bus driver had to drive off with him for emergency reasons it would mean absolute chaos because Keyan wouldn't understand. He would most likely have an aggressive outburst. There are a million scenarios that make living with Autism complex and crazy and being home at a fixed time everyday is one of them for me.
Think about it - everyone tries their best to get to work on time and the reality is sometimes it's impossible. If you show up five minutes late your boss may look at you funny but will let it slide (unless you are perpetually late and have a psycho boss).
Picture yourself - on you way to work - late and flustered - your blood pressure goes up and the stress is rising....NOW close your eyes and picture yourself in this scenerio. NOW think of me and that is me everyday!!! Unless I am already sitting home waiting for my BOSS (that's what I call Keyan) to arrive.
Argh - there are times when this restriction is extremely overwhelming!
Thank you for reading. Eleven days left of my chronicle.
* disclaimer I am not generalizing but rather speaking of my own reality.
April 20, 2017
I'll do anything for my children! In fact I (we) have done a lot of things to give Keyan as many tools as possible for him to be the best he can be. To live the best life possible.
A few years back I was introduced to the idea of a service dog or a MIRA dog as they are referred to here in Quebec, as a tool to help children with Autism lead better lives. The dog helps in many ways depending on the child. For us Keyan wasn't sleeping through the nights and we thought a MIRA dog could help.
We lived through a hellish period when Keyan couldn't sleep through the night. He would wake at 1am thinking it was morning. We did anything and everything to calm this child who bounced off the walls until 5am. Kunal and I were beyond exhausted - we were both on the verge of a total nervous breakdown. That was the impetus for wanting a MIRA dog - so Keyan would have a constant companion to ease his anxiety and hopefully get him to sleep through the night.
We waited 2.5 years to get our lovely dog, Bagou. Like anything else in our lives it was far from being the miracle we had hoped for. It took Keyan a good 6 months to want to pet her. Wanting so much for my son I focused so much on what the dog was suppose to do for him that I never envisioned how it would change my life. Everyday I have a constant companion...I have to bring Bagou everywhere....to work, to meetings, to the grocery store, to the mall, doctor's appointments... I mean everywhere. I think you get get the picture. In essence everywhere I go I have a dog with me unless Keyan is home then she is with him.
Why is the dog with me when the dog has been assigned to Keyan.
The reason is that the dog is a working dog and is always on. Keyan being non-verbal and without the intellectual capacity to master her she has to remain with me. A service dog cannot be played with and if Bagou were left with Keyan he wouldn't care what you did with her. So its my job as her master to ensure she is working, always on and never played with (in the conventional sense of how we play with our dogs).
After a 1.5 years with us this is what Keyan and Bagou's relationship looks like-
- Bagou sleeps in Keyan's room on the floor.
- Keyan tells her to lay down (with a hand gesture) every time she walks into the room.
- With assistance Keyan feeds her.
- Keyan and papa walk Bagou together on average 3 days a week (because the other days Keyan has leisure activities).
- He sometimes lays on the ground with her and glares into her eyes.
- He has graduated to kissing her on the head (it is one of the most tender moments I have ever witnessed and it melts my heart every time).
- He opens the patio door to either let her in or out of the house.
- He has learnt to let us know when he wants her in his presence or not. Sometimes he simply wants to be alone.
We are truly grateful to the MIRA foundation for all its hard work and dedication to helping people in need (visual impaired, physically handicap and people with Autism). If it wasn't for them we couldn' t have a dog because Keyan cannot handle disobedient dogs. We trust that Keyan and Bagou's bond wil continue to grow but it will do so at my son's pace (a snail's pace).
In hindsight I had no idea what I was getting myself into when adopting Bagou. I always got a lot of stares at the grocery store with Keyan making his loud noises and now I get stopped because people are fascinated with Bagou and want to know all about her. I have even had people ask me what my disability is. All that to say we learn to adapt...and knowing me I will continue to do things for my son without over thinking the consequences.
That's today's entry - I hoped you enjoyed learning a little more about what it means to have a sevice dog. - xox
April 20, 2017
There are days when we sit back and take stock. Am I doing the right thing? Should I get back up for the thousandth time or should I just stay down for the count?
Today is one of those days. I feel utterly defeated - totally deflated!!! I ask myself is it all worth it? Maybe there is another way and I have been to stubborn to see it.
I have shared with all of you that being a mother to a child with severe autism is hard. Believe it or not there is something even harder for me!!! That is to be a volunteer President, Founder and General Manager for a charitable organisation that helps families living with Autism. There are challenges I face weekly that only those closest to me are privy too.
I don't get paid for what I do (despite what people may think). I work on average of 20 hours a week (throughout the year) but S.Au.S. is woven into the fabric of my being and therefore I spend sleepless nights thinking of things. S.Au.S. consumes me. My husband and I have made financial sacrifices to see S.Au.S. launch, I have endangered many of friendships (by having my friends volunteer/work with me) and I have given 110% of myself. I have shed my blood, sweat and lots of tears for this organisation.
Is it all worth it? Am I just being naive to think I can make a difference?
For now it's safest to be still and breath in hopes that the answers come to me.
Thank you for taking the time to read post #2 of the day. I beg you not to respond because I didn't post this for pity but rather as a release - to unburden myself for what I carry.
April 21, 2017
A good night's sleep, a perfect send off this morning, a good day at school and a happy boy once home. I got lots of love, hugs and kisses. Now that's a good day for mama bear.
April 22, 2017
It was a huge week now every bone in my body aches. The best part is there is no rest for the wicked because this upcoming week is final preparations for Autism Awareness Run #9. Hope to see you there.
For all of you who have been following my chronicles register for the run/walk today if you want to see Keyan up close and personal. We are hoping that he will walk the 5km like he did last year with papa on one side and Bagou on the other. Fingers crossed it all works out.Tomorrow the sun is suppose to shine in Montreal so let's hit the streets to get warmed up for next Sunday.
April 23, 2017
I am truly blessed to have such wonderful kids. This morning I went to run a half marathon and left them alone (not a first). Keyan was a good boy for Manisha and Manisha took care to make sure her little brothers needs were met.
Autism is not all bad and challenging. With a little love, patience, understanding and kindness anyone who has the desire can help a person living with Autism.
April 24, 2017
My son is non-verbal. Yup that means he can't speak BUT he does vocalise (makes sounds). To be truthful there is only one word he can say and that word is "mama". Is this an accident? I don't think so! He says mama because he knows in his heart of hearts that there is no one that loves him more than me.
This morning when I went to wake Keyan something extraordinary happened. After a few seconds of our usual cuddle session he looked in me deep in the eyes and " goo-goo mama"? A huge smile thereafter.
What do you think he was trying to say?
This sentence although far from articulate - far from perfect was one of the most beautiful things he has ever said to me.
April 25, 2017
Day #25 and I have writers block.
But my friend Terri Pine adds this: So, I will try to help. So many parents face the diagnosis of Autism in isolation. They are overwhelmed and don't know where to turn. They are still afraid of the misconceptions and stigma that goes along with the word "autism". They don't know where to get help, they are faced with endless waiting lists when all they want is to hear that there is something available to them.
Parents on the South Shore, especially the anglophone ones, fear that there is nothing available to them. Are there other parents out there facing the same things as they are? Are they doing anything right or everything wrong? Then someone tells them about S.Au.S. They find out about this little miracle, that there are playgroups and classes available for their child. A summer day camp???!!! Music classes? Something for their kids? A place where their kids are not the odd man out or the puzzle piece that doesn't fit. A place where they can meet other parents of Autistic children and learn that they are not alone. Your
Day 25 should be about HOPE Audrey. Because that is what you give to so many others. Love you. XOXO
April 26, 2017
Only 3 days left for final preparations for the 9th Annual Autism Awareness Run. Tonight after making supper for my family I head back to the office to work.
The gorgeous weather prompts me to open the windows and draw back the sunroof of my truck. As I am pulling out of the driveway all I hear is my son vocalising his extreme content (loudly). SMILE
The funny part he is not outside in the spa but actually inside taking a shower. When it's this beautiful outside my favourite thing to do is to fling open the windows welcoming the spring air into my home.
I laughed out loud because what it must sound like to the neighbours. A real crazy house!!! I wouldn't have it any other way. This past week Keyan has been a star!!! Like all of us he yearns for the sun, the warmth and the sure tail signs of spring.
Autism although difficult has moments of bliss. A smile, a kiss, a hug, a sound, the present moment and overwhelming LOVE. This life although not easy - it is my life and I strive to make it the best life possible for myself and my family.
Thank you to all the beautiful peeps I saw today (you know who you are). Your kind words of encouragement for writing this 30 day chronicle means the world to me. It was a scary endeavor but I took the leap of faith. You guys hold a special place in my heart.
Thank you for reading.
Hope to see you Sunday. xox
April 27, 2017
4 more days of my chronicle and there is so much left to say. I feel like I am writing for the first time and don't know where to start. What important thing do I want most people to know. Do I tell a funny story or is it time to get serious. I feel overwhelmed.
How about this
Autism is a SPECTRUM disorder. There are families out there who have children with Autism that look nothing like mine. I know families who have children on the spectrum who appear 100% normal - they perform well at school, they have friends, they play sports. Then there are other families that fall apart under the constant stress of having to care for an extremely difficult child who is aggressive, doesn't sleep, cannot take care of him/herself.
I know people have good hearts. Often times people want to help and don't know how. For all of you who have been there for me my sincerest thank you. Let me give you a small grocery list of what that help has looked like.
- Show up for me and my family.
-.Acknowledge my challenges.
- Ask how I am.
- Bring me a coffee (yes, a Tim's one cream & one sugar)
- Support my work.
- Don't be afraid to ask me questions about Autism.
- Ask how my children are doing.
- Let me vent.
- Be patient with me.
- Allow my tears to flow.
- Forgive me when I have done something wrong.
- Acknowledge that I am only human.
- Let me know I have done good with my kiddies.
- Ask me on a date: dinner, coffee, the movies etc.
- Make me a cocktail.
- Bring me food (a special thanks to Teflon)
- Ask me about running (my passion).
- Join me on a drive with Keyan.
- Take my children for a ice cream.
- Respond to my facebook status because sometimes your messages give me strength to carry on.
This is a short list of how you have helped me. I think is applies to any mama bear who lives with a special needs child. We don't always want to be mama's - we want to be women in our own right.
April 28, 2017
To protect the safety and well being of my child there are a slew of things I have to do out of the ordinary.
When in public I have to take Keyan into the ladies room with me. If ever you see a woman entering a washroom with her man child that's me. Simply carry on.
April 29, 2017
Autism has led me down a path I could never have imagined for myself. Because of Autism I found running which turned into a passion. That passion started an awareness campaign turned into an Annual Autism Awareness Run/walk. Which gave me the idea to start a charitable organisation ( S.Au.S.) to help families living with Autism.
Despite the storms brought on by Autism I am always forced to figure things out. People often say "I don't know how you do it!" My response is I have no choice. It's my life and I have to make the best of it. Therefore, despite the weather: cold, rain, wind or sunshine I show up and I am truly grateful for the hundreds of people who show up despite the cold, rain, wind or sunshine. Tomorrow is run #9 and I can't wait to see all of you!!!
Thank you for showing up for Autism.
It means the world to me,my family, S.Au.S. and all families affected by Autism.
You can still sign up tomorrow. Hope to see you there.
April 30, 2017
Autism Awareness Run #9 is in the books. So happy it didn't rain on our parade. Thanks a million to my amazing team, the sponsors, volunteers, walkers and runners. Every year I am overcome with gratitude for all who come out to support us. With the money we raise we are able to move forward with our mission to help families living with Autism. I have shared videos and photos of the day. Take a moment to watch.
It's day 30 of my chronicle. This is how it ends. I am grateful to all of you who gave me feedback during the process. There are so many more stories to tell- good, bad and ugly. I want you to know it was difficult at times to share our life but at other times it was cathartic for me. I don't know what the future holds but if the last 9 years are any indication then I must carry on, push through and climb up to arrive.
I hope when Rob Kemp is struggling to finish his big race next weekend he will hear my voice..... Running is a choice- Autism isn't. You got this Rob. A sincere thank you for showing up for us today. Once again, thank you for reading.