Grandview Kids

Every Child And Youth Living Life At Their Full Potential

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World Spina Bifida and Hydrocephalus Day – October 25

Adrian Polidano

On October 25, World Spina Bifida and Hydrocephalus Day raises awareness and understanding for these diseases that affect the spine and the brain. It’s also a day to advocate and promote the rights of those living with these conditions.

Client Story:

“Wesley is seven years old but was born 16 weeks premature and suffered a traumatic brain injury (TBI) shortly after birth. While in the Neonatal Intensive Care Unit, he was diagnosed with Hydrocephalus when he was only a few weeks old.

Hydrocephalus is a chronic condition in which there is a buildup of excess cerebrospinal fluid (CSF) in the brain’s ventricles. CSF normally circulates throughout the brain and spinal column, but it can become blocked and pool in the ventricles, causing them to widen and put harmful pressure on the brain’s tissues. Causes of Hydrocephalus include head injuries, brain tumours, genetic inheritance, or may be associated with developmental disorders like spina bifida. Signs and symptoms are usually a bulging fontanelle and setting sun eyes (in infants), unusually large head size, lethargy, vomiting, and complaints of headaches. Cognitive displays of hydrocephalus can also present themselves through changes in personality, slowing or loss of developmental progress, impaired cognitive skills, and memory loss.

There is no cure for Hydrocephalus, but there are several ways to treat it. Spinal taps, implanting an Ommaya Reservoir, and, most commonly, implanting a device known as a shunt are ways to help circulate the excess CSF normally throughout the body.

Wesley outside using his walker.
Wesley playing with toys.

Wesley began presenting symptoms of Hydrocephalus a few weeks after birth. He has had spinal taps, an Ommaya Reservoir, and several shunt revisions since his diagnosis. Today, he has had a total of 7 brain surgeries related to his Hydrocephalus. As a lifelong illness, he must be followed long-term by his neurosurgeon. A shunt can go from working for 18 years to suddenly malfunctioning. The shunt valve can become clogged, or the pressure in the shunt may be too little or too much for the individual. The success of shunt revisions is unpredictable, but immediate treatment encourages a positive outcome.

As parents, we are constantly on the lookout for signs of shunt malfunction or failure and must also provide this information to his caregivers and schoolteachers. Wesley is also learning to advocate for his needs and being able to identify his own signs of shunt malfunction or failure.”

Holland Bloorview’s Extensive Needs Service partners with Grandview Kids, Michael Garron Hospital and Surrey Place so more families can access care closer to home

TORONTO, Friday, Oct. 20, 2023 —  With limited financial resources, Anthea Charles has struggled to find the right care and services to help her son Idika function outside their home. Since turning 15 years old, his meltdowns have included aggressive and destructive behaviour that his family had never seen before and has made school attendance increasingly difficult. His inability to communicate with his family and loved ones made it almost impossible to know how to help him — until Idika was able to receive care through Holland Bloorview Kids Rehabilitation Hospital’s new Extensive Needs Service.

Now, more children and youth, like Idika, with complex and extensive care, neurodevelopmental and behavioural needs can receive timely, personalized, wrap-around supports – right in their own neighbourhoods in the Greater Toronto Area, thanks to the partnership announced today by Holland Bloorview, Grandview Kids, Michael Garron Hospital (MGH) and Surrey Place.

This regional partnership comes on the heels of the April 2023 launch of the Extensive Needs Service (ENS) program through which Holland Bloorview, the Children’s Hospital of Eastern Ontario (CHEO) and McMaster Children’s Hospital are providing critical specialized neurodevelopmental health services to over 1,000 families annually.

Funded by the Ministry of Health and the Ministry of Children, Community and Social Services, this program was developed for children who have multiple neurodevelopmental, behavioural, medical and physical needs, as well as social vulnerabilities – kids who have otherwise fallen through the cracks of a complex health and developmental services system.

Overall, the program is designed to reduce barriers to accessing timely, evidence-based treatment for some of the most vulnerable children in the province.

Families participating in the Extensive Needs Service can connect to a team of professionals, including physicians, social workers, occupational therapists and behavioural consultants who work together to provide tailored support based on the individual needs of the child or youth and their families. Services are individualized, trauma-informed and can include prescribing or adjusting medications; goal-directed behaviour therapy; mental health assessments and treatment; social work, such as counselling for parents and caregivers; and other specialized interventions to support children and youth to build skills, such as communication and self-regulation.

 As the SmartStart Hub for Toronto, Surrey Place will serve as an entry point to help families navigate to and access care through the Extensive Needs Service with dedicated service coordinators who will work closely with families to coordinate their care at Holland Bloorview’s Extensive Needs Service program.

Toronto families interested in the Extensive Needs Service program and who are not currently receiving care at Holland Bloorview can connect with Surrey Place online or by calling 1-833-575-KIDS (5437) to inquire about their eligibility to access these supports. For Anthea, Holland Bloorview’s Extensive Needs Service Program has given her reason to hope again. Since Idika was enrolled in the program early this spring, she has noticed that he is more expressive, more patient and more flexible. “I feel like I’m getting my son back. I can’t thank the program staff enough for how they’ve helped my son so much now.”

Quotes:

“Our government is improving the experiences and long-term outcomes for children and youth with complex special needs. We are investing $97 million in the Extensive Needs Service pilot program to support more than 1,000 children with complex special needs every year,” said Michael Parsa, Minister of Children, Community and Social Services. “When children and families can access services tailored to their needs, the short and long-term outcomes for children improve, as do their parents’ well-being.”  – Michael Parsa, Minister of Children, Community and Social Services

“Our government is taking action by working with our health partners to connect children and youth and their families to specialized care, closer to home. This new and innovative partnership will ensure children and youth with complex needs in Toronto and Durham Region can access the care and services they need and deserve in their community.” – Sylvia Jones, Deputy Premier and Minister of Health

“This new partnership between Holland Bloorview, Grandview Kids, Michael Garron Hospital and Surrey Place will provide access to Extensive Needs Service program to more families of children with complex care needs in the Greater Toronto Area. Instead of spending time navigating a complex system, families will be able to get their care their child needs and deserves in a way that is connected and convenient.” – Hon. Peter Bethlenfalvy, Minister of Finance

“By joining forces with our new partners, children, youth and their families living in Toronto and Durham Region can receive the specialized care they need closer to their homes and delivered by their local healthcare teams. Thanks to the support from the Government of Ontario, we are helping to support a health system that is more agile, socially accountable and accessible to families.” –  Julia Hanigsberg, president and CEO of Holland Bloorview

“We are honoured to partner with Holland Bloorview Kids Rehabilitation Hospital to implement an Extensive Needs Service Program in Durham Region. Children with extensive needs, living in our community, deserve to have access to coordinated, responsive care close to home. This reduces the burden on these families to travel long distances to see their providers, which only further exacerbates the caregiver burnout so many experience due to the current lack of support for this vulnerable population. ”  Tom McHugh, CEO, Grandview Kids

“As a mother, I have done everything I can for my children and it’s still not enough. Available resources are greatly limited, waitlists are long, being selected for funding is akin to playing the lottery and costs to procure private services are high. The Extensive Needs Service is helping prevent us from losing our kids and our home. Rory’s therapy is vital to her life and the wellbeing of our entire family.” –  Jamie, mom to Rory who is receiving care from Grandview Kids

“MGH is excited to partner with Holland Bloorview to launch this critical service in early 2024 to meet the needs of children, youth and families in East Toronto. Most importantly, this service is close to home, low-barrier, with timely, personalized care based on each child’s need. ” –  Dr. Krista Lemke, medical director of Child and Adolescent Mental Health Services at Michael Garron Hospital (MGH).

“We are thrilled to be part of the Extensive Needs Service and are honoured to join all our partners to provide more seamless and personalized health services for families who need it the most. Surrey Place has a unique role in this partnership, acting as the entry point to help families access and navigate care through Extensive Needs Service. In our role as the lead agency for coordinated service planning, our focus is to reduce barriers for families with children and youth who have multiple or complex special needs, and connect them with the right services and supports, based on their strengths and needs. Our dedicated service coordinators will work alongside families to determine goals for services, coordinate and make referrals to the right community supports, and ensure families are at the center of the decision-making process.” –  Terri Hewitt, CEO, Surrey Place

About Holland Bloorview Kids Rehabilitation Hospital

Holland Bloorview Kids Rehabilitation Hospital believes in creating a world where all youth and children belong. We are the only children’s rehabilitation hospital in Canada focused on combining world-class care, transformational research, and academic leadership in the field of child and youth rehabilitation and disability. We are a top 40 Canadian research hospital that is fully affiliated with the University of Toronto. Providing both inpatient and outpatient services, Holland Bloorview is renowned for its expertise in co-creating with clients and families to provide exceptional care and is the only organization to ever achieve 100 per cent in three successive quality surveys by Accreditation Canada. Holland Bloorview is a founding member of Kids Health Alliance, a network of partners working to create a high quality, consistent and coordinated approach to pediatric health care that is centred around children, youth and their families. Together we dream big. Together we champion a world of possibility.

About Grandview Kids

Founded in 1953, Grandview Kids is a family-centred, independently operated non-profit organization dedicated to supporting children and youth with physical, communication and developmental needs. Through specialized programs, rehabilitation services and outpatient clinical therapies, Grandview Kids supports children and youth to live life at their full potential. Learn more at grandviewkids.ca.

About Michael Garron Hospital

Nestled in the heart of East Toronto, Michael Garron Hospital (MGH) is a vibrant community teaching hospital serving more than 400,000 people in 22 distinct neighbourhoods. For more than 90 years, MGH has delivered high-quality, patient-centred healthcare services to families along the continuum of care, from welcoming a new life to facing end-of-life. MGH is a full-service hospital with strong community and research partners, including the University of Toronto. MGH is a proud member of East Toronto Health Partners, the Ontario Health Team serving East Toronto.

About Surrey Place

Surrey Place is a leading provider of services and support for individuals with confirmed or suspected developmental or intellectual disability. With over 60 years of experience in the field, Surrey Place is committed to providing exceptional care and support to help individuals achieve their full potential and lead fulfilling lives.

MEDIA CONTACTS:

Suelan Toye
Senior Research Communications Specialist
Holland Bloorview Kids Rehabilitation Hospital
Cell: 416-520-7953
stoye@hollandbloorview.ca

Avori Cheyne
Chief Communications Officer | Executive Lead, Strategic Communications, Partnerships, Engagement
Grandview Kids
avori.cheyne@grandviewkids.ca

Alison Shouldice
Senior Communications Specialist
Michael Garron Hospital
alison.shouldice@tehn.ca

Betty Kim
Senior Communications Specialist
Surrey Place
betty.kim@surreyplace.ca

October 22 is International Stuttering Awareness Day (ISAD), which was founded in 1998. This day is intended to raise public awareness of stuttering, which affects one percent of the world’s population. Stuttering, or stammering, is a communication disorder in which the flow of speech is broken by repetitions or abnormal stoppages of sounds and syllables.

At Grandview Kids, our team of speech-language pathologists work hard to give children and youth the skills they need to overcome their stuttering and equip them with the tools to communicate effectively. 

Client Story:

“Henry has always been a silly kid, one who will do anything to make us smile by singing songs, telling us silly stories and asking us questions. He was also always a perfectionist who, from an early age, would enjoy arranging his toy cars into neat lines. Currently, Henry loves numbers, Lego, and astronomy, which suit his personality well. 

We noticed as Henry’s language developed that, he would have periods of time where he had difficulty getting his words out. However, these periods would pass, and his speech would return to normal. Once Henry started Junior Kindergarten, we noticed his speech becoming strained and difficult for a prolonged period of time. Henry became more hesitant to speak.

When we would ask him about his day, he would just say he didn’t remember. He would avoid complex sentences and, at times, avoid speaking altogether. It was heartbreaking to us that our little silly boy was losing his will to speak. We sought help from his family doctor as well as his teachers. His teachers were able to refer us to a private speech pathologist, Stacey Carroll, at Connect 2 Communicate. Stacey was immediately so helpful, welcoming, and reassuring to us that we could help Henry. She assessed that Henry had a stutter and immediately helped connect us with Grandview Kids. 

The service we have received from Rikki, the speech-language pathologist at Grandview Kids, has been remarkable. We feel like she has returned our son to us. Rikki has been fantastic at explaining how stuttering happens and the steps to alleviate the stutter. The strategies we were taught by Rikki have been so effective at returning Henry’s speech to a more fluent form that his confidence has also returned. We cannot thank Rikki and Grandview Kids enough for what they have done for our family.”

World Teachers’ Day is held annually on October 5 to celebrate all teachers around the globe. It commemorates the anniversary of the adoption of the 1966 ILO/UNESCO Recommendation concerning the Status of Teachers, which sets benchmarks regarding the rights and responsibilities of teachers and standards for their initial preparation and further education, recruitment, employment, and teaching and learning conditions. World Teacher Day celebrates how teachers are transforming education but also to reflect on the support they need to fully deploy their talent and vocation, and to rethink the way ahead for the profession globally.

Being a teacher provides the unique opportunity to make a transformative and lasting impact on the lives of others, contributing to shaping sustainable futures and offering personal fulfilment.

Meghan P., a Special Education Teacher and Literacy Coach at Campbell Children’s School (CCS), talks about her experience as a teacher at CCS:

“Teaching at Campbell Children’s School has given me the opportunity to work closely with a team of experts, and it’s a place of constant change and growth! The students and staff are remarkably caring and hardworking, which has profoundly influenced the way I live my life and perceive the world around me.

Meghan P is a white woman wearing a black shirt. She is standing in front of green trees. Meghan is a Special Education Teacher and Literacy Coach at Campbell Children’s School (CCS).
Meghan P., a Special Education Teacher and Literacy Coach at Campbell Children’s School (CCS).

CCS has actively promoted and supported my journey, from my early days as an Early Childhood Educator to becoming a Classroom Teacher and eventually a Literacy Coach. I have come to understand that I play a pivotal role in my student’s journey, and I am committed to providing them with the same level of support and motivation that this school has generously offered me.

Although we may appear to be a small school, our impact is significant, and it wouldn’t be possible without all the various components that make up our community. This diverse team of educators, therapists, administrators, parents, students, and more has empowered me to diversify my teaching approach and tap into students’ strengths while helping them develop essential skills. I consider myself incredibly fortunate to have found a space that not only allows my career to flourish but also aligns with my core values, which advocate for everyone to have the opportunity to learn, grow, and belong.”

Islamic History Month Canada (IHMC), observed throughout October, is a profound celebration and exploration of the rich heritage of Muslims in Canada. It magnifies their noteworthy contributions to the advancement of humanity across various fields, encompassing scientific breakthroughs, humanities, medicine, astronomy and more. The inception of IHMC in 2007 was an honourable proclamation by the late Mauril Belanger, MP for Ottawa-Vanier. Since then, IHMC has been officially recognized in numerous provinces and municipalities across Canada, embodying a mission to foster understanding and bridge gaps, especially during times when Muslims may face unfair stereotypes. The month serves as a dedicated platform to highlight the invaluable contributions of Muslims to humanity, often overlooked or unknown.

IHMC’s theme for 2023: “Celebrating Muslim Women in the Arts & Sciences”

This theme pays homage to the historical impact of Muslim women, acknowledging their profound influence on global and Canadian progress in arts, sciences, and society. By acknowledging and celebrating these remarkable women, we aim to inspire and empower Muslim youth and challenge detrimental stereotypes associated with gendered Islamophobia. Previous IHMC themes have delved into various facets, such as Islamic Art and Architecture, Islamic Banking and Finance, Irrigation and Water Systems, Medicine and Pharmacology, and Islam and the Environment, demonstrating the depth and breadth of Islamic contributions throughout history.

Some Muslim women who have made notable contributions to Canada and Canadian history across various fields:

  1. Dr. Hana Ahmed: A scientist and researcher, Dr. Ahmed is known for her work in biomedical engineering and the development of innovative healthcare technologies. She has made substantial contributions to improving medical devices and technologies for patient care.
  2. Hodan Nalayeh: Hodan was a prominent journalist and media personality known for her work in promoting positive stories about the Somali diaspora and highlighting the achievements of individuals within the community. Tragically, she lost her life in a terrorist attack in Somalia in 2019.
  3. Zarqa Nawaz: Zarqa is a well-known Canadian television producer, writer, and filmmaker. She created the popular TV show Little Mosque on the Prairie, which depicted the lives of Muslims living in a small Canadian town and helped raise awareness and understanding of Islam in Canada.
  4. Salma Lakhani: In 2020, Salma Lakhani became the first Muslim Lieutenant Governor in Canadian history, serving as the Lieutenant Governor of Alberta. She is a notable advocate for education and community development.
  5. Monia Mazigh: Monia is a Canadian academic, author, and human rights advocate. She gained prominence through her activism to seek justice for her husband, Maher Arar, who was wrongfully detained and tortured. Her efforts have contributed to improvements in national security and human rights in Canada.
  6. Nour Hadidi: Nour is a Canadian journalist and the first hijab-wearing news anchor to appear on mainstream Canadian television. She has worked for major news outlets and serves as an influential figure, breaking barriers in media representation.

For more information, please visit https://icnasistersca.org/projects/ihm/ or https://www.islamichistorymonth.ca.

Written by IDEA committee member, Janicka A., and Grandview Kids parent, Abby V.

World Cerebral Palsy Day, which occurs annually on October 6, reminds us that there are over 17 million people impacted by this disorder. Many people wear green to celebrate World Cerebral Palsy (CP) Day.

There are more than 17 million people in the world living with CP and it is one of the most common physical disabilities affecting the most vulnerable among us — children.  At Grandview Kids, clinicians in developmental pediatrics, occupational, physio, therapeutic recreation and speech-language therapies support children living with CP and work with their families.

Grandview Kids’ parent, Abby V., speaks about his son, Wesley, who has CP:

“Wesley is a thoughtful and engaging social butterfly. He always has a joke or witty phrase on hand and approaches strangers like long-lost friends. He was also born 16 weeks premature and suffered a brain bleed, leading to extensive brain damage shortly after birth. He was diagnosed with both Hydrocephalus and Spastic Diplegia Cerebral Palsy (CP).

Wesley playing with toys at Grandview Kids.

CP is the most common physical disability in children. His form of CP affects both of his lower limbs’ tone, movement and coordination. His muscles are stiff, and his reflexes are spastic. He uses equipment, such as ankle-foot orthotics (AFO’s), as well as a wheelchair and walker for support and mobility.

Wesley using his walker.

It is a lifelong disorder, and there is no cure, but there are treatments that help to improve function and quality of life. Wesley has accessed services from Grandview Kids, such as Physiotherapy and Occupational Therapy to improve his fine motor and gross motor skills. They work on things like zipping up his coat and writing with a pencil to transfer between equipment and muscle strengthening. He has come a long way from being unable to crawl as a baby to now using his walker while playing in gym class. His therapists continue to support him through their school-based rehab program to ensure he has the right equipment and provide staff training as needed so that his safety needs and personal goals are met, and he can access the curriculum, just like his classmates.”

Cerebral Palsy and the Six F-words in Childhood Disability

Function, Family, Fitness, Friends, Fun and Future are the six F-words in Childhood Disability developed by Dr. Rosenbaum and Dr. Gorter. They highlight the intersectionality of how the first five factors affect the future of children with CP and encourage clinicians to focus on these factors throughout treatment.

When Grandview Kids families are participating in the CP-NET study, they are smiling, laughing and passionate when speaking to me about their child’s interests and abilities. As the Research Assistant connecting with these families, I’ve learned so much about CP by listening to their insightful lived experiences. Let’s join the world by wearing green on Friday, October 6, 2023, and learning more to celebrate people living with CP!

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