Aiden's story

Images Captured By Amber Light photo and design

http://www.amberlightphoto.com/

Four year old Aidan is a happy little boy who finds joy in even the simplest things in life. This Tiny Light is known for his genuine laughter, which is rather contagious. He loves dancing to music, playing with his iPad, and going on nature walks. Aidan also has an incredible sense of direction and an amazing memory for places he's been before.

After Aidan was born, he developed more slowly than other kids his age, but still managed to reach all expected milestones. Then, at age two, his parents Christine and Spencer noticed his speech was regressing. It eventually disappeared altogether and Aidan lost interest in his surroundings and other people. Following several examinations, Aidan was diagnosed with autism.

Over the past two years Aidan has started making verbalizations and can now use pictures to communicate. Still, he has motor issues and sensory deficits, which have resulted in him eating just 10 items. With continued therapy, his parents are hopeful that Aidan will continue to make progress.

In September, this Tiny Light will begin classes at a special needs kindergarten - an important milestone for Aidan and his loved ones, who have grown closer during the challenges of the past four years. As Aidan's mother Christine notes, her son has taught them what's important in life and to live in the moment.
written by Catherine Urquhart

Peter's Story

Images Captured by Victoria West

www.victoriawestphotography.com

Meet Tiny Light Peter. He loves playing with his brother and sister, building forts, drawing, reading and playing hockey. He also loves spending time cuddling with his cat, Arthur.

Growing up, Peter seemed to develop at an early age and was walking when he was just six months old. However, after his first birthday, his behaviour changed and oftentimes he could be easily panicked and would throw tantrums. His behaviour became an increasing issue as he grew older and his parents sought opinions from several different sources who all claimed he was just “young” for his age. When Peter entered kindergarten, his troubles continued and he was subsequently diagnosed with autism.

Peter’s diagnosis helped his parents to better understand his behaviour and anxiety. They realize that every individual is affected differently by autism and take pride in being able to celebrate the areas in which Peter excels, such as math and athletics. Peter’s parents say that the most amazing part of this journey has been “...meeting other parents whose children have similar diagnoses. There is an understanding and a bond between us. We know the struggles and the difficulties and the joy that our children bring us.”

Peter continues to inspire his family with his journey and has taught them that his diagnosis will not define his life. Peter’s family hopes their tiny light will grow to be “happy...find love and understanding...a sense of belonging...[and]...that he will accomplish his dreams.”

Story by Stephanie Bond

Owen's Story

Images Captured By Vanessa Balenovich Photography

Meet Tiny Light Owen. He loves learning new things in school – especially numbers and the ABC’s. He also enjoys being outdoors either playing soccer or just sitting and watching for airplanes to fly by in the sky.


At age two, Owen’s parents had noticed that he was not developing at the same rate as other children his age. that he had great difficulty when communicating, and that he had severe sensory issues. After a consultation with a medical professional, he was diagnosed as Non-Verbal with Moderate to Severe Autism. According to his parents, Owen “...could not communicate [and] he had no pretend play skills.”


Owen has to work extra hard to accomplish simple tasks that come naturally to other children. The determination and progress that he has demonstrated, particularly with his verbal communication skills, inspires his parents every day. As they say, “He has opened up a whole world for our family, we don’t just get through the day, we embrace the day. He inspires [us] every day to be the best [parent], person and advocate for Autism that [we] can be.”


As a message to others, Owen’s parents say that “this road with children with Autism is a hard one, it is a road less travelled for most ... always be optimistic.”


Story by Stephanie Bond

Andrew & Matthew's Story

Images Captured by Anna Jones Photography

www.annajones.ca

These Tiny Light twins may face challenges, but they never complain and wish their lives were any different.  Andrew has atypical autism and moderate/severe spastic cerebral palsy, requiring a wheelchair for most of his day-to-day activities.  Matthew has ADD and mild cerebral palsy, which affects his motor skills.

Their parents knew the twins would have some form of disability before they were born.  Andrew was officially diagnosed at 6 months, Matthew at 3 years of age.  “We were in one way thrilled the twins had survived to delivery and made it home from the NICU, but we knew that life would be challenging as the parents of twins – and twins with special needs.”

The 12-year old brothers are great working together, but they have very different aspirations.  Andrew wants to be a DJ.  Matthew dreams of being a pilot.

This family has faced many ups and downs, yet there is so much to look forward to with these Tiny Lights.  “The slower pace does allow you to truly enjoy the moment that might otherwise pass you by.”

Written by Elaine Yong

Benjamin's Story

Images captured By HRM Photography

Meet Tiny Light Benjamin!  A mighty trooper!  Ben brings love and joy to those he meets.  Ben gives amazing cuddles, and his mom looks forward to their “treasured cuddle time.” Ben is a curious boy who loves to play with trains, computers, puzzles and videogames.  Dubbed “Puzzle piece kid,” Ben can master puzzles right-side-up or up-side-down!  WOW!  Mom says, “Ben is Ben, and he is the best!”


Doctors have been left baffled at times, researching and testing Benjamin, looking for a fitting diagnosis that best describes his needs, as well as the treatment and support that will support his needs.  Multi-challenged, ADHD, global delay and autism spectrum are just a few of the diagnoses that have been discussed at this point.  However, there is no cookie cutter diagnosis that fits right now.


At just two years old, Ben has endured and struggled with epileptic seizures.  They are investigating his seizures with hopes that they will be able to suppress them in the future, but there is much fear and uncertainty of the damage that these seizures have already caused.  To have some control of the seizures and to ultimately be seizure free would be a gift. 


Heartbreaking struggles and the feeling of helplessness overwhelm Mom on a daily basis.  However, there are always reasons to celebrate his success and growth.  Despite the challenges Ben faces, he conquers each day and brings sunshine to those who know and love him.  Mom knows that Ben is in her life for so many reasons.  Ben’s journey has made his mom a stronger person, and has given her the firm belief to learn, read, educate yourselves, seek support and advocate for your child. 


Story by:  Leah Nahirnick

Jack's Story

Images Captured by Haley Lorraine

Meet Tiny Light Jack.  This three-year-old is a huge ‘Bob the Builder’ fan who loves going walks, playing and running in the park, listening to music, and, most of all, being in the company of others.


Jack was diagnosed at 18 months of age with Autism after his parents noticed that he was not responding to his name, was losing motor skills, and did not seem aware of the people and activities happening around him.  His parents, Allison and Craig, struggled with “not knowing how severe it may get....not knowing if ever he would be able to ride a bike, have friends and play like any other child his age... to still live in uncertainty as to his outcome.”  But they keep hope alive, take the good days with the bad, and have learned much about “patience, kindness, gentleness, and self-control...but ultimately true love.”


In their efforts to support Jack as best they can, his parents have learned so much, such as surrounding themselves with positive people, keeping hopeful, and never giving up.  They hope for Jack to have a chance at doing everything that other kids his age get to experience, such as going to school and having positive relationships with others.  Allison and Craig are inspired in their daily lives by a quote: “Love bears all things, believes all things, hopes all things, endures all things.” 

Meet Maggie and Molly

Images Captured by GingerSnaps Photography

Molly loves to play dress up, play with her babies, make crafts, sing and dance; her sister Maggie is also a fabulous dancer and singer.

Molly has a general diagnosis of hypotonia with an additional diagnosis of Spastic Paraplegia, although it has yet to be confirmed.  A major frustration for her parents was the lack of further opinions on Molly’s condition, resulting in sleepless nights waiting for test results and not knowing whether she was living with a threatening illness.  It has been an ongoing process trying to determine where Molly’s symptoms are stemming from.

Maggie’s diagnosis is Autistic Disorder; their reaction to this was sadness and disbelief in the beginning.  Their parents have experienced every emotion from fear, then relief.  Sadness then gratitude. Anger then joy.  The hardest part of Maggie’s journey for her parents has been wondering what the future holds for her.  “You imagine your children’s lives and never in a million years do you expect to have to think about saving for them because they may not be able to support themselves.”

As their daughters overcome each individual challenge they are faced with, Molly and Maggie’s parents are amazed at how they are each thriving and what phenomenal little people they have become.  They love to hug each other, a tell tale sign to their mom that everything will be okay because no matter what, they will always have each other.  Each day, Molly and Maggie surprise their parents at what they can accomplish, giving them tremendous hope. 

Advice they have to give: Never, ever blame yourself or feel guilty; you have to learn how not to feel sorry for yourself or for your children.  They also feel that they have learned a lot about themselves, their marriage and their relationships with their extended family.  Instead of focusing on the negative, the girls’ family choose to celebrate the fun times which for them means trips to Disney World.   “Wish it, dream it, do it!”

Story by Kristi Hall-Busque

Ronan's Story

Images by Teagan Photography

Tiny Light Ronan is a pure soul who loves unconditionally.  He is only 7 years old, but already, he has taught his family just how precious life can be. 


Ronan’s mom Natacha says she always knew her son was special and it was almost a relief when doctors diagnosed him with autism at the age of 2.  The family was living in Saskatchewan– the province with the least support for autistic children at that time – and to give Ronan the best chance possible, they made the difficult decision to move. 


It wasn’t easy for Curtis and Natacha to come to terms with Ronan’s diagnosis, but they love him unconditionally.  Dealing with other peoples’ reactions has been challenging.  Ronan roars in church when babies cry.  He screams when he is hungry or tired.  He can only hold conversations with his parents.  But there is so much more to this Tiny Light.  He enjoys riding his bicycle and downhill skiing.  This little monkey can climb anything and has no fear of heights. “Every developmental stage and life milestone is such a labourious process, so when he succeeds and overcomes, it is such an incredible and euphoric experience it is impossible to stay sad.” 


Ronan’s parents dream he will finish high school and dance with a girl during his prom night, all dressed up and looking dashing.  Not too hard to imagine for this Tiny Light! 


Written by Elaine Yong

Meet Alex

Images Captured by Leanne Liakos Photography

Meet Tiny Light Alex.  Alex
loves driving around with his Dad listening to “cool” music.  He also loves
to sing.  Several music teachers have told Alex's parents that he has
perfect pitch!

Alex was diagnosed with severe Autism at two-and-a-half years old.
His Mom had suspected that something was not quite right from the time Alex was
16 months old.  Alex had a few words that he spoke on occasion; he then
stopped responding to his name.  When his Mom noticed that he was no longer
reacting to his family members, she began researching.  Despite the fact
that her research kept coming to the word Autism, Alex's diagnosis
still came as
a shock.  They were devastated.  Because of the wait to see a
developmental pediatrician, they had lost a whole year.  "A whole year of
lost time when all of the 'experts' tell you how imperative early invention is.
Gone."  Alex's father was in shock and denial, hoping it was a misdiagnosis
and that they would find it to be something less debilitating.  This was a
period of transition for Alex's Mom.  She was armed with a year’s worth of
research, she was grieving, but now they had an official diagnosis,
meaning that
Alex could now get funding and could start therapy.

Alex can now do many of the things that they were once told he would
possibly never do.  He has loving relationships, he laughs at funny things,
feels remorse and last year even said 'I love you Mommy', unprompted.  He
had learned how to use a computer, and is great at using an IPhone and other
touch screens.

Things are still difficult for this family.  Alex is prone to
meltdowns, and often needs to be carried away when this happens.  He can be
very impulsive, making restaurants tricky; Alex will often get up and start
eating food off of other tables.  His parents live in fear that he will
leave the house and get lost.  In a way this journey has been hardest on
Alex's Dad who dreamed of teaching his son life experiences and playing sports
together.  "Even though there are special little moments and milestones
here and there, everyday you live with and look at your beautiful child, whom
you had all of these wonderful plans for, and everyday you are reminded of what
could have been and may never be for him."

There are many therapies out there.  Alex's parents want to stress the
following to parents who have kids with Autism: you have to remember that what
the experts say to do isn't always the right thing for your child.  You are
your child's best advocate.  Alex's parents hope that Alex will be able to
fully communicate one day and that he will be able to work to decrease his
frustration.  "We hope that he will have meaningful friendships and that he
will have lots of people in his life who are true friends.  I hope he is
able to love and be loved.  I just want him to be happy."

Story by Angela Stephen-Dewhurst

Meet Madison!

Images Captured by Stephanie Fieldberg Photography

This is Madison.  Madison loves Max and Ruby.  She loves to stack paper and spin shoes.  Madison also loves ice cream.  Madison has Down Syndrome and Autism Spectrum Disorder.  She has seizures, thyroid issues, and has had Atrial Septal Canal Defect with holes in her heart, which required corrective surgery when she was just three months old.


It was not until after she was born that Madison’s parents were hit with the news that their baby had Down Syndrome.  Before this news could even sink in, she was sent to another hospital to confirm her life-threatening heart condition.  “It was a rollercoaster of emotion.”


The diagnosis of Autism is a new one for Madison.  Eleven years later, her parents feel that this diagnosis helps them to understand why Madison does the things she does.  They have taken the Autism diagnosis and are now moving forward, making things work for Madison instead of against her.  Madison’s speech is limited, so there is hope that her communication skills will improve with the help of therapy.  She is a happy girl, and no matter what in life is thrown at her, she keeps laughing and finding the joy in the small things.  Who wouldn’t be inspired by this!?


Madison’s parents do worry that she will not move past the level she is at now.  “Part of learning about life is learning how to keep going…even when times get tough.”  And it has been tough for this family!  But there have been many positives, such as learning the joy and laughter that a child with Down Syndrome can bring into your life.  “There is nothing like a hug from Madison.  She puts all of her heart into it!”

Story by Angela Stephen-Dewhurst