Trauma is the lasting emotional response that can result from living through an event that undermines a person’s sense of physical or emotional safety.  Long after the traumatic event occurs, people who have experienced trauma can continue to feel the effects which can impact their ability to function day to day.

COVID-19 has had an effect on everyone’s sense of physical and emotional safety.  For individuals who live with a developmental disability and their caregivers, adjusting to life in isolation and significant changes to routine has been particularly difficult.   

We are now adjusting to a “new normal” where we will continue to practice physical distancing in most environments and those of us who are able to will wear masks and other personal protective equipment as needed.  Things are changing every day as we learn more about COVID-19 and while it is important to stay well informed it is just as important to be aware of how we and those we care for are being impacted.  

ConnectABILITY.ca has compiled a list of resources so that individuals with developmental disabilities and their families can find the support and information that they need.  You are not alone and help is available. 

Please note: if you are experiencing a mental health crisis please contact 911 immediately or present to your nearest emergency department. 

Resources for Children and Youth

1. Jack.org has created an online hub of COVID-19 youth-focused mental health resources to help students take care of themselves and their peers.
   
2. School Mental Health Ontario provides students with resources and guidance around self-care, reaching out for help and maintaining a positive outlook.
   
3. Woodview Mental Health and & Autism Services is offering virtual ‘walk-in’ mental health counselling during COVID-19. See the attached flyer for more information.
   
4. Kids Help Phone is a 24/7 national support service that provides free professional counselling services to young people through phone, text and live-chat.
   
5. Bounce Back is a free, evidence-based cognitive behavioural therapy (CBT) program providing guided mental health self-help supports for adults and youth over the age of 15.
   
6. AIDE Canada has developed resources and toolkits to support children and youth with autism and intellectual disability deal with stress during this difficult time. 
   
7. What’s Up Walk-In provides free virtual mental health counselling to children, youth, young adults and families. 
   

Resources for Adults, Parents and Families

1. Health Care Access Research and Developmental Disabilities (HCARDD) offers a variety of free information sheets, webinars, videos and tools to help individuals with an intellectual disability better understand COVID-19 and manage feelings of worry and stress.
   
2. Canadian Association for Community Living (CACL) has developed a robust COVID-19 resource page to provide individuals with developmental disabilities and their families with reliable information and resources, including a section on mental health supports.
   
3. Autism Ontario has put together a list of mental health resources to help people with autism and their caregivers get through this global pandemic.
   
4. Safehaven has developed a Self-Help Corner with resources for staff, parents and families, including fun at-home activities that can help promote positivity and well-being.
   
5. Community Living Ontario’s Staying Connected page offers suggested resources to boost health and wellness such as mindfulness apps, fitness videos and a downloadable guide to educate individuals about normal versus excessive worrying.
   
6. The Council for Intellectual Disability provides videos, easy read guides, and information sheets to help individuals with an intellectual disability look after their mental health.
   
7. Surrey Place has compiled a list of online tools that provide accessible and up-to-date information for individuals with a developmental disability, including tips on reducing anxiety and stress.
   
8. Check out Anxiety Canada’s articles, CARD handouts, mobile app and My Anxiety Plan online courses to effectively manage and deal with anxiety as a result of COVID-19.
   
9. The Ontario Caregiver Organization offers caregiver tip sheets, multilingual resources and an online peer support group for individuals in a care-giving role.
   
10. CAMH provides a variety of mental health resources to help individuals cope with the effects of COVID-19 such as feelings of isolation, stress and anxiety, loss and grief, and stigma and prejudice.
    
11. The Candian Mental Health Association has put together some resources and suggestions to help support mental health at this time of uncertainty.
    1. Additionally, CMHA branches are open but offering alternative service delivery, for more information, click here.
    2. To enroll in a free virtual mental health course, click here.
       
12. Wellness Together Canada provides free mental health and substance use supports including modules for addressing low mood, worry, substance use, social isolation and relationship issues.
13. The Mental Health Commission of Canada has developed tip sheets to help individuals cope with COVID-19, including strategies to manage ‘return anxiety’ as the lockdown lifts.
    

Resources for Seniors

1. Chatting to Wellness offers free 1-1 chatting sessions over the phone to all seniors, across Canada to help isolated seniors feel connected and reduce stress.
   
2. Bob Rumball has developed a series of Mental Health and Wellness videos for deaf seniors with ASL interpretations. 
   
3. The Canadian Coalition for Seniors’ Mental Health shares physical distancing activities, virtual visits toolkits, tips for battling anxiety and mental health support lines for Seniors in Canada.

Fact Sheet

What is Sotos Syndrome?

Sotos syndrome is a rare multisystemic genetic disorder characterized by a typical facial appearance, overgrowth of the body in early life with macrocephaly, and mild to severe intellectual disability.

Sotos Syndrome is an autosomal dominant condition which means that if either one of the parents has Sotos, there is a fifty percent chance that each of their children will inherit the condition. 

In around 90% of children with Sotos Syndrome the cause is a mutation in the NSD1 gene. This gene provides instructions for making a protein that is involved in normal growth and development. The protein affected cannot then function properly and normal growth is disrupted. It is not currently clear how the disruption causes the overgrowth and other complications and research is ongoing.

How is it Manifested?

The following characteristics are present in Sotos Syndrome:

• A long narrow face with a high forehead
• Flushed (reddened) cheeks
• A small pointed chin – large mandible
• Corners of the eyes point downwards with an abnormal increase between the eyes
• Large feet/hands- clumsiness and awkward gait
• Intellectual disability (Autism Spectrum Disorder, Mild Intellectual Disability)
• Behavioural issues (can include Attention Deficit Hyperactivity Disorder, phobias, tantrums, obsessions/compulsions, social development delays)
• Delays in speech/language – monotone voice, stutter, problems with sound production
• Delays in motor skill development – weak muscle tone (hypotonia)

Additional characteristics may include:

• Curvature of the spine (scoliosis)
• Seizures
• Heart or kidney defects
• Hearing loss
• Problems with vision
• Some infants with this disorder experience jaundice and poor feeding
• A small percentage may develop cancer in childhood

Who is affected?

Sotos Syndrome is reported to occur in 1 in 10,000 to 14,000 newborns.

Diagnosis

A clinical diagnosis of Sotos Syndrome may be gained by the presentation of the typical symptoms:

• Characteristic facial appearance
• Learning disability
• Childhood overgrowth
• Increased head circumference

This suspected diagnosis can be confirmed through a genetic test to check changes in the NSD1 gene.

Treatment

There is no specific course of treatment for Sotos Syndrome. Treatment is usually based on symptoms which have been identified.  Sotos Syndrome is not a life-threatening disorder and individuals may have a normal life expectancy.

Resources

Sotos Syndrome Support Association of Canada

The Sotos Syndrome Support Association of Canada helps to support families by providing them with information by way of handbooks, pamphlets, Internet, public lectures, and discussions, and with emotional support by facilitating discussions with other parents who have been through similar experiences.

1944 Dumfries, Montreal, Quebec, H3P 2R9 Canada
Email: info@sssac.com
Website: http://www.sssac.com

National Organization for Rare Disorders

NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

https://rarediseases.org/rare-diseases/sotos-syndrome/

Fact Sheet

What is Attention Deficit Hyperactivity Disorder?

Attention Deficit Hyperactivity Disorder (ADHD) is a neurobiological condition that is characterized by three main symptoms: inattention, hyperactivity and impulsivity.  It is the most prevalent childhood psychiatric disorder in Canada.  ADHD is not a learning disability but a person with ADHD can have an accompanying learning disability.  Children with ADHD are often labeled as having behaviour problems rather than a medical problem. 

Although it’s not clear what causes ADHD neurological (brain structure and functioning), genetic, and environmental factors play a role.  It is a chronic disorder that persists across the lifespan although symptoms can change over time. Teens may grow out of their hyperactivity or learn to channel it into appropriate physical activities while symptoms of inattention may increase in adulthood.

How is it Manifested?

ADHD effects mood regulation and executive functioning which is responsible for problem solving, organizing and planning things out.  This combination can impact the ability of a child with ADHD to self-regulate.  

Although hyperactivity is one of the main symptoms of ADHD some children may not demonstrate hyperactivity and may appear to lack energy and seem quiet and reserved.  While lack of focus and difficulty attending to task is another symptom of ADHD, when engaged in high interest activities children with ADHD can become hyper focused and may have difficulty moving on from the activity. 

Children with ADHD can have difficulty picking up on the social cues of others and may behave in socially inappropriate ways appearing to act without thinking.  They may interrupt other’s conversations or activities and can have difficulty listening or waiting for a turn in a conversation. 

Children with ADHD can have a short attention span which can lead to difficulty paying attention to long instructions or teaching sessions.  They are likely to daydream or begin to move and fidget when they are expected to sit quietly for long periods. 

Children with ADHD can experience mental health challenges such as anxiety or depression.  Low self-esteem is also a concern as some of the behaviours associated with ADHD can result in strained relationships with educators, and caregivers as well as isolation from peers and siblings.  

Who is Affected?

Boys are up to three times more likely to be diagnosed with ADHD than girls, but this can be attributed to the fact that girls are more prone to inattentive type ADHD which is marked by disorganized and unfocused behaviour.  Impulsiveness in girls with ADHD may be expressed as excessive talking rather than the disruptive, impulsive physical behaviours typically seen in boys.  Because symptoms appear so differently between boys and girls, girls usually go undiagnosed until later in adolescence or even adulthood. 

The general prevalence of ADHD is estimated at between 5-9% for children and adolescents, however, because girls are typically diagnosed so much later this statistic is likely low.  Up to approximately half of children diagnosed with ADHD also have another neurological disorder such as autism or mental health condition such as anxiety or depression.

How is ADHD Diagnosed or Detected?

The first step in diagnosing ADHD is for the family to discuss their concerns with their family doctor or pediatrician.  If the doctor does not have specific training regarding ADHD they will make a referral to a medical professional that is able to assess the child.  A diagnosis is made based on family history, the professional’s observations of the child and questionnaires filled out by the family and the child’s teachers.

ADHD is categorized into one of three categories, depending on the presence or absence the three core symptoms: inattention, hyperactivity and impulsivity.

• Predominantly inattentive presentation (used to be referred to as ADD)
• Predominantly hyperactive-impulsive presentation (very rare)
• Combined presentation (most prevalent)

ADHD can be diagnosed in children as early as age four however, some professionals may hesitate to provide a diagnosis at such a young age. 

Resources 

The Centre for ADHD Awareness Canada 

The CADDAC website is a comprehensive source of information about ADHD.  They are a “Canadian national charitable organization dedicated to improving the lives of those with ADHD through ADHD awareness, education and advocacy.” https://caddac.ca/adhd/

They provide a series of 3 videos explaining ADHD to children: Me and My ADHD: A series of animated videos helping children understand ADHD. 

Regroupment Des Associations Panda Du Québec

French language ADHD information and resources.  https://www.associationpanda.qc.ca/

ADHD & You

A comprehensive website with downloadable stories, practical tips and resources designed for parents of children with ADHD as well as teens and adults who have ADHD.   http://www.adhdandyou.ca/

References 

• adhdandyou.ca
• caddac.ca
• https://www.caddra.ca/wp-content/uploads/CADDRA-Guidelines-4th-Edition_-Feb2018.pdf

The content contained in this document is for general information purposes. It is not the intention to diagnose or treat a child.