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
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.
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.
All children experience some form of anxiety; this is to be expected and can be a response to something positive or negative happening in a child’s life. Feeling anxious can be associated with changes in routines, family dynamics, new experiences or exposure to a traumatic event. Any indication of a child experiencing anxiety requires a supportive and empathetic response to help them manage worries and learn a variety of coping skills.
Working Through Anxiety Together
It is important to identify your child’s feelings and responses to a variety of situations. Work together with your child to practice new skills when they are calm and during general routines so that they can use those skills when feeling anxious.
Watch and learn how your child reacts under stress. Their reaction will tell you what they need.
Help your child recognize and label emotions in themselves and others.
Provide space and an opportunity for your child to express emotions without shame.
Offer comfort and reassurance quickly when your child is showing anxiousness. Let them know you are there for them and stay close to offer comfort if they choose.
Understand your own response to stressful situations. What strategies are you modeling?
Find ways to regulate your own emotions to avoid inconsistent responses to situations.
It’s important to include family and cultural practices throughout the day, ones that will help your child find a way to ground themselves within their identity.
Visit new settings in advance to introduce your child to an upcoming change (e.g., if your child is starting school or a new child care program, visit the physical setting, talk about the changes in advance and on multiple occasions).
Warmly welcome and say goodbye to your child when coming or going. Make eye contact, smile and reassure them.
Provide engaging, interesting and challenging activities for your child to shift their attention to when feeling anxious. Ask yourself, “What do they like to do?”
Offer a favourite toy or activity to help comfort your child when they are anxious. Spend some time with them at that activity.
Slow down and allow flexibility in your routine. When possible, let your child lead the routine and allow time to complete tasks. If your child is upset, slow the routine down to give them extra time to regulate their feelings. Model calming techniques, such as taking deep breaths, thinking of a quiet place, counting to ten. Practice these activities with your child during calm periods.
Prepare your child for transitions using visuals, such as pictures or verbal reminders to give them time to prepare (e.g., “In five minutes we are going to tidy up and get ready to go outside”).
Prepare your child before any upcoming changes. You can use tools such as calendars, books or personalized stories to help them understand the change.
Use a visual schedule, showing pictures of the daily routine and step-by-step mini-schedules for parts of the day that are more stressful. This will increase predictability of the routine and help your child understand what is happening next. Model using the visual schedule and make it a fun experience with your child, let them point out what is happening next.
Use a visual timeline, such as a calendar to count down the days until the start of an upcoming change.
Additional Tips for School-aged Children
Talk about what is happening, plan and brainstorm solutions together. Be sure to practice this plan during moments of calmness and revisit later, after a stressful situation, to adjust the plan as needed.
Help your child adapt to stressful situations through short exposure and practice. Completely avoiding triggers of anxiety does not allow your child the opportunity to build a toolbox of coping strategies. With practice, your child can learn to work through their fears and worries.
Help your child ‘reframe’ their anxious thoughts. Here is a script that can help:
“Name a worry floating around in your mind right now.”
“What is the worry telling you?” What is a fact about this worry?
“Let’s break it down and tell me more about how you feel.”
“How can we take that worry and change it to a positive thought?”
Help your child list strategies to use in a moment of anxiety. Write them down or use pictures to represent the strategies. Here are some examples:
deep breathing
progressive muscle relaxation – tense a group of muscles and then relax them, moving up from the toes to the top of the body
squeeze a stress ball
journal ways to identify worries and reframe thoughts
talk about worries with a trusted adult
Remember…
Children, like adults, need time to adjust to new people, situations and experiences. Thoughtful and supportive responses on the part of the adults in a child’s life can help them learn how to approach fears and manage their anxiety.
Helping your child respond positively to new and potentially stressful situations supports healthy emotional development. All children are unique and have different ways of managing. What is tolerable to other children may not be for your child. It’s important to understand the cause of the anxiety and the ways to support them. Caregivers, family members and early learning educators share a role in making children feel safe and secure.
If your child has a sudden change in behaviour such as limited appetite, disruptive sleep patterns or is no longer interested in favourite activities, contact your child’s family doctor for additional resources and support.
References
Beidel, D. C., & Turner, S.M. (2005). Childhood anxiety disorders: A guide and treatment. New York: Routledge.
As we approach Summer 2020, it is important to recognize that children and adults will have different experiences understanding physical distancing and other protocols in place due to COVID-19. Although attending traditional summer camps may not be possible this year, there are alternatives. Many classrooms and businesses are offering virtual services including summer camps. Below is a list of virtual summer camp options. Please note, some camps have a registration fee.
Shadow Lake Camp
Campers will enjoy a wide variety of virtual activities. Each week of virtual camp follows a theme and the activities/crafts are geared to the weeks theme!
Virtual Camp will consist of a combination of large “all camp” activities as well as smaller “Cabin” activities. This enables the campers to have opportunities to interact in large and small groups and with different staff and campers each day/week! Much of the “live” feed will be streaming directly from our actual camp so participants will feel more connected, engaged, and involved. They will also receive a camp kit worth over $50 including tuck treats every day, craft supplies, various activities to do while at home, or with the camp staff through Zoom and a camp shirt! (additional camp kits can be purchased if there are multiple people in the household).
Virtual Camp will be offered Monday to Friday each week beginning June 29, 2020. Morning sessions will run from 10:00am-12:00pm and afternoon sessions will run from 2:00- 4:00pm, (except for Fridays, which will finish by noon). Mid-day breaks will be complemented by Facebook Live activities.
Children and youth will have the opportunity to develop skills related to social interaction, maintaining friendships, and learning about others through fun activities that strengthen turn-taking and sharing skills as well as their imagination.
The camps will be facilitated by the Kerry’s Place Community Services team and will take place on Zoom, an online platform.
Virtual camp will be offered Monday through Friday beginning July 6, 2020.
9:30am-3:30 pm in one-hour intervals
Families will be able to express their interest beginning June 10, 2020.
Live programming will include social time, games, theme days, dances, coffee houses and performances, pageants, dances and more! Additionally, pre-recorded videos are available that explore the animals and the nature of camp.
June 1st to August 29th, 2020 daily activities online Monday to Saturday.
The Boys & Girls Clubs have partnered with Jays Care to offer a virtual summer camp. Registering for this camp will include weekly activity kits delivered to you, interactive programming and great resources for the whole family!
Camps will run in week-long sessions beginning on June 29 and each session will be 45 minutes to 1 hour long.
Cost: Free
To register, go to https://www.wsncc.org and click “Register Now” to select the week you would like to attend this virtual camp experience! If you have any questions about the camp or regarding registration, please email Northstaff@wsncc.org or call 416-500-9268 for more details.
STEM Camp
Offers virtual camps for gamers and those interested in website building and coding. From website design to Minecraft camp, these sessions will keep young minds busy and engaged.
Through interactive, fun, and social online activities and programs, campers of all ages and diverse abilities learn with trained counselors through role-playing game adventures, crafts, drawing, cooking and more.
Through live video streaming, counsellors lead discussions, offer mentorship, and cheer on campers during activities.
Innovative Online Summer Drama Camp with a variety of fun and interactive activities for kids and young people age 6-14 years. Participants will engage in collaborative and engaging drama games, improvisations, art projects, plays and scenes, along with lots of music, mixed in with fun movement activities and dance parties.
A camp week consists of two 75-minute participatory sessions each day, Monday to Friday, in which coaches will share movement games as well as storytelling and playwriting along with music, poems and fun raps.
McMichael’s art instructors have developed a fun and action-packed curriculum of virtual programming for children aged 6 to 12 years that includes artmaking activities, guided viewing of iconic gallery artworks and creative exercises that will nurture creative spirit and allow them to socialize with their peers in a safe online environment.
Camps will run in week-long sessions beginning on July 6.
One to One Summer Support Worker Reimbursement Fund
Do you need support for your child with Autism Spectrum Disorder (ASD) this summer? The 2020 One-to-One Summer Support Worker Reimbursement Fund is available to Ontario families of children or youth with ASD who retain the services of a one-to-one support worker for their child as follows:
Eligible Services:
Respite services to support caregivers during the day, evening or weekend, at home or elsewhere (for example supervision of the child or youth, help with daily living activities or taking child out for an activity); and/or
Fees for online or in-person recreational and cultural activities and camp programs that help to promote independence and develop social, communication and life skills (for example sports, arts and music programs, museums, and camps).
Note that these eligible expenses are consistent with OAP eligible expenses. Please click here to apply and for more information: https://www.autismontario.com/camp
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)
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/
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/
Michelle Anbar-Goldstein MSW, RSW and Radek Budin Ph.D., C.Psych from CAMH give an overview of the services that the Forensic Dual Diagnosis Specialty Service (FDDSS) provides.
Recorded at the Shared Learning Forum, February 28, 2020
Puppet show: Script of scenario “Caring is Cool” with the puppets:
Act out two scenarios with puppets
Feedback from kids on puppets’ actions in between scenarios; the first scenario has someone not telling when a child is bullied, the second scenario shows puppet telling the teacher when a child is bullied, (discuss which scenario is right)
Skill Development:
if you are being bullied
tell an adult right away
if someone else is being bulled
tell an adult right away
remember no one deserves to be bullied
Read “I Care About Others” and/or “I’m a Good Friend”
Games: Motorboat, Paper Punch/Basket Ball Throw, Ring around the Rosie”
Goodbye Song
Caring is Cool
Inappropriate Way: [Frankie is talking to Zawar when Daisy approaches.] Daisy[pushes Zawar saying:]“Move and get out of my way dummy” [and she pushes Zawar again.] Zawar[starts to cry:] “Stop pushing me”. Daisy [pushes Zawar again and says:] “Oh yeah, make me.” [Zawar cries again.] Frankie [says to himself:]“I don’t know what to do, I’m out of here” and runs away.
Appropriate Way: [Frankie is talking to Zawar when Daisy approaches.] Daisy[pushes Zawar saying:]“Move and get out of my way dummy” [and she pushes Zawar again.] Zawar starts to cry: “Stop pushing me”. Daisy[pushes Zawar again and says:] “Oh yeah, make me.” Frankie: “Stop it Daisy”[and calls the teacher:] “Mrs.Garcia, Daisy is hurting Zawar”
Puppet show: Script of “What to do if You’re Bullied”
Act out two scenarios with puppets
Feedback from kids on puppets’ actions in between scenarios; first scenario shows puppet telling an adult when bullied, the second scenario has someone not telling (discuss which scenario is right)
Skill Development:
if you are being bullied say “stop”
tell an adult right away
remember no one deserves to be bullied
Hot Potato
Read from “Bye-Bye Bully”
Game: Anti-Bullying Strategies Fishing Game
Hurray Song
What to Do if You’re Bullied
Inappropriate Way: [Daisy is busy looking at a book when Frankie approaches.] Frankie: “What a dumb book, give it to me, I want it” [Daisy tries to ignore Frankie.] Frankie[pushes Daisy, grabs the book and throws it away]: “I said give it to me, you better listen from now on and don’t tell anyone” Daisy [begins to cry]: “Okay, Frankie, whatever you say.”
Appropriate Way: [Daisy is busy looking at a book when Frankie approaches.] Frankie: “What a dumb book, give it to me, I want it” [Daisy tries to ignore Frankie] Frankie [pushes Daisy, grabs the book and throws it away]:“I said give it to me, you better listen from now on and don’t tell anyone” Daisy[begins to cry and says:] “Stop it.”[Daisy goes towards her teacher:] “Mr. Koala, Frankie took my book and he pushed me.”
Puppet show: Script of scenario “Telling vs. Tattling” with the puppets:
Act out two scenarios with puppets
Feedback from kids on puppets’ actions in between scenarios; first scenario shows puppet tattling to get someone in trouble, the second scenario has someone telling to get someone out of trouble
Skill Development:
telling is when you tell an adult to get someone out of trouble
tattling is when you tell an adult to get someone in trouble
Read Story of “Telling is o.k.”
Games: One Potato, Motorboat, Silly Bones, We are Special Chant
Goodbye Song
Telling vs. Tattling?
Inappropriate Way: Frankie [is scribbling on a paper while the teacher is saying “everyone draw a flower”] Daisy[looks over and sees Frankie scribbling and says:] “Teacher, Frankie is just scribbling, he is not drawing a flower”
Appropriate Way: [Frankie is busy drawing when Daisy approaches.] Daisy: “Give me that paper, that’s an ugly picture Frankie” [Frankie tries to ignore Daisy.] Daisy[pushes Frankie, grabs the paper and crumples it up]: “I said give it to me, you better listen from now on”[Daisy pushes Frankie again] Frankie[begins to cry and says:] “Stop it” Zawar[who is watching this goes to get a teacher:] “Teacher, Daisy is hurting Frankie”
Feedback from kids on puppets’ actions in between scenarios; the first scenario shows bystander watching and not telling and the second scenario has the bystander getting an adult
Skill Development:
when you see someone else getting bullied you are a Bystander, you can:
tell the bully to stop
go tell an adult that someone needs help
Read bystander page from “Bye, Bye Bully”
Games: clapping, row your boat (as a group), ring around the rosie, or motorboat
Read “Bullying is Wrong”
Hurray Song
Who is a Bystander?
Inappropriate Way: [Frankie is busy playing with Zawar when Daisy approaches] Daisy: “Zawar move away, I’m playing with the crocodile.” [Zawar keeps playing with Frankie and tries to ignore Daisy.] Daisy [pushes Zawar]: “I said move loser… I’m going to play with the crocodile.” Zawar: “Stop it”[and starts crying.] Frankie: “I have to go Zawar”[and runs away.]
Appropriate Way: [Frankie is busy playing with Zawar when Daisy approaches.] Daisy: “Zawar, move away, I’m playing with the crocodile.” [Zawar keeps playing with Frankie and tries to ignore Daisy.] Daisy[pushes Zawar]: “I said move loser. I’m going to play with the crocodile.”[Daisy pushes Zawar again] Zawar[begins to cry and says]: “Stop it” Frankie: “That’s not nice Daisy” [and Frankie goes to get a teacher] “Teacher, Daisy is hurting Zawar.”
