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Williams Syndrome

Fact Sheet

What is Williams Syndrome?

Williams Syndrome is a rare, congenital (present at birth) disorder characterized by medical, physical and developmental problems including an impulsive and outgoing (excessively social) personality, limited spatial skills and motor control, and intellectual disability (e.g., developmental delay, learning disabilities, and attention deficit disorders). Symptoms vary among individuals.

Most people with Williams Syndrome will have a mild to severe learning disability. Young children with Williams Syndrome often experience developmental delays. Milestones such as walking, talking and toilet training are often achieved somewhat later than is considered normal. Distractibility, a common problem in mid-childhood, appears to get better as the children get older.

Older children and adults with Williams Syndrome often demonstrate intellectual “strengths” and “weaknesses.” There are some intellectual areas such as speech, long term memory, and social skills in which performance is quite strong, while other intellectual areas, such as fine motor and spatial relations are significantly delayed. Scientists have learned that most individuals with Williams Syndrome have a deletion of genetic material on Chromosome 7 which includes the elastin gene.

How is it manifested?

Physical Indicators:

  • facial features “elfin” like
  • early problems: low weight, weight loss, below average growth
  • heart and blood vessel problems
  • hypercalcemia (elevated blood calcium levels)
  • low birth-weight/low weight gain
  • dental abnormalities
  • musculoskeletal problems
  • kidney abnormalities
  • hernias
  • hyperacusis

Behaviour Indicators:

  • irritability
  • feeding problems
  • overly friendly (excessively social) personality
  • developmental delay, learning disabilities, and attention deficit
  • high verbal ability
  • sensitivity to loud noises

Who is affected?

It is estimated to occur in 1 in 8000 births. It is known to occur equally in both males and females in every culture.

How is it diagnosed or detected?

Many individuals with Williams Syndrome remain undiagnosed or are diagnosed at a relatively late age. This is of concern since individuals with Williams Syndrome can have significant and possibly progressive medical problems. When the characteristics of Williams Syndrome are recognized, referral to a clinical geneticist for further diagnostic evaluation is appropriate. The clinical diagnosis can be confirmed by a blood test. The technique known as Fluorescent In Situ Hybridisation (FISH), a diagnostic test of the DNA, detects the elastin deletion on Chromosome 7 in 95% to 98% of individuals with Williams Syndrome.

Additional Resources:

Williams Syndrome Association (WSA) – www.williams-syndrome.org
The WSA is the only group in the United States devoted exclusively to improving the lives of individuals with Williams Syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up-to-date educational materials regarding Williams Syndrome.

Canadian Association for Williams Syndrome (CAWS) – https://www.williamssyndrome.ca/
The Canadian Association of Williams Syndrome (CAWS) was founded by a group of parents in 1984. CAWS is a national federation of the provinces in Canada that provides support to Williams Syndrome individuals and their families.

Books and Literature:

Williams Syndrome: Approaches to Intervention
By Eleanor Semel and Sue R. Rosner

Journey from Cognition to Brain to Gene: Perspectives from Williams Syndrome
By Ursula Bellugi and Marie I. St. George

Fulfilling Dreams – The WS Parent Handbook
By Barbara Scheiber

Articles:

Williams Syndrome Information for Teachers
By Karen Levine
Available at www.williams-syndrome.org/teacher/information-for-teachers

Visual Impairment

Fact Sheet

What is a visual impairment?

A visual impairment is the consequence of a functional loss of vision, rather than the eye disorder itself. Eye disorders, which can lead to visual impairments, can include retinal degeneration, albinism, cataracts, glaucoma, and muscular problems that result in visual disturbances, corneal disorders, diabetic retinopathy, congenital disorders, and infection.

The effect of visual problems on a child’s development depends on the severity, type of loss, age at which the condition appears, and the overall functioning level of the child. Many children who have multiple disabilities may also have visual impairments resulting in motor, cognitive, and/or social developmental delays.

How is it manifested?

The terms partially sighted, low vision, legally blind, and totally blind are used in the educational context to describe children with visual impairments. They are defined as follows:

  1. Partially sighted indicates some type of visual problem has resulted in a need for specialized consultation.
  2. Low vision generally refers to a severe visual impairment (not necessarily limited to distance vision). It applies to all individuals with sight who are unable to read the newspaper at a normal viewing distance, even with the aid of eyeglasses or contact lenses. They use a combination of vision and other senses to learn, although they may require adaptations in lighting or the size of print, and, sometimes, Braille.
  3. Legally blind indicates that a person has less than 20/200 vision in the better eye or a very limited field of vision (20 degrees at its widest point). Totally blind students learn via Braille or other non-visual media.

Who is affected?

The rate at which visual impairments occur in individuals under the age of 18 is 12.2 per 1000. Legal or total blindness occurs at a rate of 0.06 over 1000. According to the World Health Organization, an estimated 19 million children under age 15 are visually impaired. Of these, 12 million children are visually impaired due to refractive errors, a condition that could be easily diagnosed and corrected.

How is it diagnosed or detected?

Some disorders will be discovered at birth if the vision impairment has observable characteristics such as cataracts or congenital glaucoma. Many, however, go undetected until the child does not meet certain visual milestones.

Generally, if the child is not meeting typical vision milestones by around three or four years, they can be referred to an ophthalmologist. Proper diagnosis cannot be made without a thorough exam from an ophthalmologist.

Additional Resources:

Canadian National Institute for the Blind (CNIB) – www.cnib.ca
The CNIB provides relevant, specialized services nationwide. They support and/or conduct research about vision to ensure the continued development of services. The CNIB also supports medical research and influences public policy, and the development of technology that helps people who are blind or visually impaired lead independent lives.

Vision Institute of Canada – https://www.visioninstitutecanada.com
The Vision Institute is a not-for-profit optometry clinic. Regular and specialized eye care services are provided to the general public and to persons with special needs. All funds raised support services to persons in chronic care facilities and to persons with visual impairments, brain injuries, developmental disabilities and unique vision problems.

Persons with Disabilities Online – www.pwd-online.gc.ca/
It provides access to services and information for persons with disabilities, family members, caregivers and all Canadians.

Books and Literature:

Essential Elements in Early Intervention: Visual Impairment and Multiple Disabilities
By Deborah Chen

Children with Visual Impairments: A Parents’ Guide
By M. Clay Holbrook

Using the Online Stories to Share Experiences

Each of the on-line stories highlights one of the three areas in “Skills for Success”. Each area contains a wide variety of tips and activities that you can use to help prepare your child for school.

Stories are an excellent way to develop your child’s literacy skills. To learn more about literacy and young children, take a look at the workshops “Family Literacy 1: Building Self-Esteem” and Family Literacy 2: Reading and Storytelling.” As you watch the stories together, talk to your child about the pictures he sees on the screen. Continue reading for suggestions on bringing these stories to life for your child.

Let’s Bake a Cake

In this story, the class works together to bake a cake. Each child shares in the chores as well as the fun of making and eating the cake. This story teaches children about waiting, taking turns, and co-operating in a concrete way. For example, the class has to wait for the cake to bake before they can eat it.

  1. Practice identifying and naming foods with your child by creating a grocery list together. Get a supermarket flyer and ask your child to circle or cut out items you need to buy.
  2. Create picture sequences to show your child the steps to making simple snacks such as fruit salad or a sandwich.
  3. Teach your child how to name and use dishes such as plates, spoons, bowls, and cups. For example, he can eat with a spoon or use it to stir like Abby and Akbar do in the story.
  4. This is a good time to talk to your child about kitchen safety. Remind your child not to go near the stove or use a knife.
  5. Try singing the song, “This is the way we….” when teaching your child a new skill.

The First Snow

Although Jing –Mei makes a few mistakes when she is taking her snowsuit off, she receives help and encouragement from Greg and Mrs. Patel. Your child will learn that it is O.K. to make mistakes when learning a new skill.

  1. In the story, Jing-Mei walks to school with her grandmother. Talk to your child about how he gets to school.
  2. Help your child identify his belongings and where they go in your home when he is not using them. For example, his clothing goes in a drawer and his jacket goes on a hook near the door.
  3. Teach your child to identify and name different types of clothing. You can also emphasize action words such as “on”, “off”, and “pull” when he is getting dressed.
  4. Talk to your child about the seasons. In the story it is winter. What will it look like outside in the spring, summer, or fall?
  5. Talk to your child about dressing for different types of weather. In the story it is wintertime. What will Jing-Mei wear in the summer? What should Jing-Mei wear if it rains?

Play Time

In this story, Zack uses his communication book to communicate with his friend Costa. When he watches this story, your child will get an idea of what kindergarten is like. For example, sometimes he will be able to choose what he wants to do and other times he will be expected to join the group.

  1. In the story, Zack plays with blocks and the sand table. Ask your child what activities he likes.
  2. Zack uses his communication book to ask Costa to play with him. Show your child what he can do to ask someone to play with him.
  3. Zack and Costa built a block tower together. Invite your child to build a tower with you. Talk about the colours and number of the blocks you use.
  4. In the story, Mrs. Kim asks Zack and Costa to tidy up. Show your child what he can do to help tidy up at home.
  5. When Zack needs to use the washroom he lets Costa know by pointing to a picture in his communication book. Show your child what he can do to let other people know when he needs to use the washroom.

Tourette Syndrome

Fact Sheet

What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological disorder which becomes evident in early childhood or adolescence between the ages of 2 and 15 years. Tourette Syndrome is defined by multiple motor and/or vocal tics lasting for more than one year. Tics are defined as sudden, intermittent, repetitive, unpredictable, purposeless, non-rhythmic, involuntary movements or sounds. Many people with TS have only motor tics or only vocal tics. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive, and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.
These involuntary (outside the person’s control) tics may also be complicated, involving the entire body, such as kicking and stamping. There are also verbal tics. These verbal tics (vocalizations) usually occur with the movements. Later, they may replace one or more motor tics. These vocalizations include grunting, throat clearing, shouting, and barking. The verbal tics may also be expressed as coprolalia (the involuntary use of obscene words or socially-inappropriate words and phrases) or copropraxia (obscene gestures).

How is it manifested?

Simple:
Motor – eye blinking, head jerking, shoulder shrugging, and facial grimacing
Vocal – throat clearing, yelping and other noises, sniffing, and tongue clicking

Complex:
Motor – jumping, touching other people or things, smelling, twirling about and, although very rare, self-injurious actions including hitting or biting oneself
Vocal – uttering ordinary words or phrases out of context, echolalia (repeating a sound, word, or phrase just heard), palilalia (repeating one’s own words) and in rare cases, coprolalia (vocalizing socially-unacceptable words)

The range of tics or tic-like symptoms that can be seen in Tourette Syndrome is enormous. The complexity of some symptoms often confuses family members, friends, teachers, and employers who may find it hard to believe that the actions or vocal utterances are “involuntary”.

Who is affected?

While once thought to be rare, TS is now seen as a relatively common disorder affecting up to 1 person in every 2,500 in its complete form and three times that number in its partial expressions that include chronic motor tics and some forms of obsessive-compulsive disorder. One in 100 Canadians has Tourette Syndrome. TS is a genetic condition. Studies indicate that a person with TS has a 5-15% chance of having a child, sibling, or parent with the condition.

How is it diagnosed or detected?

A diagnosis is made by observing symptoms and by evaluating the history of their onset. No blood analysis, X-ray or other type of medical test exists to identify TS. A doctor may, however, wish to order an EEG, CAT scan or certain blood tests to rule out other ailments that could be confused with TS.

Additional Resources:

Tourette Syndrome Foundation of Canada (TSFC) – www.tourette.ca
The Foundation disseminates educational material to individuals, professionals and agencies in the fields of health care, education and government through its local affiliates. These Chapters, Resource Units and Contact Representatives across the country help TS patients and their families cope with the problems that so often occur with a diagnosis of TS.

Life’s A Twitch – www.lifesatwitch.com
“Life’s a Twitch” is a website based on Tourette Syndrome and associated disorders from the study and clinical work of B. Duncan McKinlay, Ph.D., C.Psych., a Canadian Psychologist registered to work with children and adolescents in the areas of clinical and school psychology.

Tourette Syndrome – Now What? – http://tourettenowwhat.tripod.com/
This site raises awareness about the full spectrum of Tourette’s Disorder, with support and accurate information based on the latest research.

Books and Literature:

Children with Tourette Syndrome: A Parents’ Guide
By Tracy Lynn Marsh

Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar and More!: The One Stop Guide for Parents, Teachers, and Other Professionals
By Martin Kutscher

Tourette’s Syndrome: Finding Answers and Getting Help
By Mitzi Waltz

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

Talking Matters

A guide to communicating with your child

Toronto Preschool Speech and Language Services: A community partnership designed to deliver speech and language services for infants, toddlers, and preschool children. This tip sheet tells you how most children learn to communicate and respond to language at different ages.

Babies (0-24 months) learn to communicate by listening to voices and sounds. A baby soon learns to make sounds to tell you how they feel or what they want. Babies develop at their own rate. Some babies do things at a young age; some will take a little longer.

Which language should I use with my child?

Many children grow up in homes where languages other than English (or French) are spoken. Parents often wonder which language they should use with their child. The research shows that it is important to maintain family and cultural connections with the child’s home language. Therefore, parents should use the language or combination of
languages that they would typically use at home.

If your child’s first language is not English, please use the suggestions in this brochure in the home language of your child.

When determining whether your child has a speech and/or language delay, your child’s skills in their first language should be used.

BY SIX MONTHS

Does your child:

  • startle in response to loud noises?
  • turn to where a sound is coming from?
  • make different cries for different needs (hungry, tired)?
  • watch your face as you talk to her/him?
  • smile/laugh in response to your smiles and laughs?
  • imitate coughs or other sounds such as ah, eh, buh?

Call for help if your baby

  • Does not react to your voice or other sounds.
  • Does not smile or make sounds when awake.
  • Does not seem to enjoy interacting with you
  • Does not look at you or try to get your attention

What you can do:

  • Pause in the middle of a song. Watch for your baby to ask for more; finish singing the song.
  • Name objects your baby touches or looks at (“Oh, a diaper. You’ve got the diaper.”).
  • Shake noise makers in front of your baby, then stop. See if your baby asks for more by looking for it or by imitating the action. Then shake it again.
  • Sing lots of songs or nursery rhymes (Peek-a-Boo, Pat-a-Cake, Up & Down, tickle games).
  • Talk to your baby when you are washing, dressing or feeding them.
  • Use gestures with your words (eg. hands up when saying “up”)
  • During bath time, name each body part as you wash it. Play games like “This Little Piggy Went to Market”; “Head and Shoulders, Knees, and Toes”.
  • Put a favourite toy in front of your baby just out of reach. Wait and see how they show you they want it.
  • Show your baby picture books and talk about what you see.
  • Make fun sounds with your baby, like “shhhh”, “boom”, “uh oh” and animal sounds
  • Exaggerate your facial expressions and tone of voice
  • Get down on the floor and play with your baby

BY 12 MONTHS

Does your child:

  • follow simple one-step directions (sit down)?
  • look across the room to a toy when adult points at it?
  • consistently use three to five words?
  • use gestures to communicate (waves hi/bye, shakes head for no)?
  • get your attention using sounds, gestures and pointing while looking at your eyes?
  • bring you toys to show you?
  • perform for social attention and praise?
  • combine lots of sounds together as though talking (abada baduh abee)
  • show an interest in simple picture books?

Call for help if your child

  • Does not make sounds or babble.
  • Does not show interest in you or other people.
  • Does not actively take turns in familiar games with adults (handing something back and forth, knocking down stacked blocks, dumping out containers, banging on pots).
  • Does not try to show you things by looking or reaching.

What you can do

  • Talk about things you see and what people are doing during the day and as you look at books.
  • During everyday activities, talk about what you are doing using short sentences.
  • Name pieces of clothing and body parts for your child (“shoe off”, “hat on”).
  • Play: “Where did you go?” when putting clothing over your child’s head.
  • Sing simple songs with actions. Help your child to copy your actions and sounds (“Ring Around the Rosie”, “Row, Row, Row Your Boat”).
  • Sing children’s songs in the language that you use at home.
  • Talk in short sentences (“Want some milk?” or “Whoops! Fall down”. “Oh, baby is crying.”).
  • Play Peek-a-Boo by taking turns hiding behind your hands, a towel or blanket. Move it away saying: “Where’s Daddy?, Here I am,” or “Peek-a-Boo.”

BY 18 MONTHS

Does your child:

  • understand the meaning of in and out, off and on?
  • point to several body parts when asked?
  • use at least 20 words consistently?
  • respond with words or gestures to simple questions (Where’s teddy? What’s that?)
  • demonstrate some pretend play with toys (gives teddy bear a drink, pretends a bowl is a hat)?
  • make at least four different consonant sounds (p ,b, m, n, d, g, w, h)?
  • enjoy being read to and sharing simple books with you?
  • point to pictures using one finger?

Call for help if your child

  • Is not trying to talk.
  • Does not make gestures or sounds.
  • Started to use words, but stopped.

What you can do:

  • Take turns with your child. Bang on pots and pans, blow bubbles, push toy cars and trains, feed the baby doll.
  • Get down and play like your child does.
  • Use action words like “roll ball,” “drink milk,” “wash hands”
  • Go for a walk. Talk about what is happening.
  • Show your child picture books and talk about what you see. Remember that you can make up words to the story and read to your child in the language you use at home.
  • Visit places like the grocery store, Early Years Centre, library, and zoo and use these trips to teach your child new words

BY TWO YEARS

Does your child:

  • follow two-step directions (Go find your teddy bear and show it to Grandma.)?
  • use 100 to 150 words?
  • use at least two pronouns (you, me, mine)?
  • consistently combine two to four words in short phrases (Daddy hat. Truck go down.)?
  • enjoy being around other children?
  • begin to offer toys to other children and imitate their actions and words?
  • use words that are understood by others 50 to 60 per cent of the time?
  • form words or sounds easily and without effort?
  • hold books the right way up and turn the pages?
  • read to stuffed animals or toys?
  • scribble with crayons?

Call for help if your child

  • Lacks awareness or interest in others.
  • Cannot be understood by you at least half the time
  • Does not put two words together.
  • Does not use a variety of words (actions, descriptors, locations, etc)
  • Stutters

What you can do

  • Take your child to an Early Years Centre, a library, and/or other places with fun programs for children.
  • Take turns tickling, feeding, and rocking dolls or teddy bears.
  • Sing simple songs with actions (Eensy Weensy Spider, Round and Round the Garden).
  • Repeat back what your child is trying to say with the correct grammar (Child: “Mommy work.” Adult: “Yes. Mommy is at work.”).
  • Talk about what you are doing during daily activities.
  • Use two to four word sentences when talking (“Look up! I see a cat.”)
  • Expand your child’s world by introducing new people and new places. Talk about the experience before you go, while you are there and when you get home.
  • Hide objects under/behind pillows, blankets, furniture. Ask: “Where’s the ball?” or “Find the teddy.”
  • Point to and talk about people and things when looking at books
  • Remember to tell stories from your home language and culture.
  • Look at your child when you are talking to each other.

Between the ages of two and four years a child’s speech and language develops quickly. The number of words they can say increases rapidly and they put together longer and longer sentences. They begin to ask many questions during their everyday activities. They enjoy listening to stories and music. Often they will ask you to read the same story over
and over again. Sometimes they will remember the words in the stories so well, it will seem like they can almost read.

BY THREE YEARS

Does your child:

  • understand who, what, where and why questions?
  • create long sentences using five to eight words?
  • talk about past events (trip to grandparents house, day at child care)?
  • tell simple stories?
  • show affection for favourite playmates?
  • engage in multi-step pretend play (pretending to cook a meal, repair a car)?
  • talk in a way that most people outside of the family understand what she/he is saying most of the time?
  • have an understanding of the function of print (menus, lists, signs)?
  • show interest in, and awareness of, rhyming words?

Call for help if your child

  • Acts frustrated when trying to communicate.,
  • Does not put more than three words together.
  • Does not seem to understand what you are saying.
  • Is not understood most of the time by others.
  • Stutters

What you can do

  • Describe things that are happening using sentences (“I’m really HUNGRY. That’s a HUGE bite.”).
  • Talk about how things are the same or different.
  • Arrange times for your child to play with other children his/her own age.
  • Repeat what your child says using correct sounds and sentences (Child: “Me want doose.” Adult: “I want juice too. I like juice!”).
  • Play games together.
  • Add information to what your child says (Child: “There are flowers” Adult: “That’s a daffodil and a tulip. They grow in the spring.”).
  • Ask your child to be a helper and give them small jobs to do.
  • Read books with pictures and take turns telling little stories about the pictures.
  • Play make-believe with or without toys (pretend to go shopping, dress-up, play with pretend toy garages/kitchen sets,).
  • Sort pieces of clothing together while doing laundry (sort by colours, who they belong to, where they go, type of clothing).

BY FOUR YEARS

Does your child:

  • follow directions involving three or more steps (First get some paper, then draw a picture and give it to Mommy.)?
  • tell stories with a beginning, middle and end?
  • try to solve problems with adults and with other children using words?
  • show increasingly complex imaginary play?
  • talk in a way that he/she is understood by strangers almost all the time?
  • generate simple rhymes (cat-bat)?
  • match some letters with their sounds (letter b says buh, letter t says tuh)?

Call for help if your child

  • Is not understood almost all the time by others.
  • Does not use complete sentences.
  • Stutters.

What you can do:

  • Talk about what you and your child are doing/interested in.
  • Play simple board games/card games helping them to match and name colours/shapes, count, and follow directions (Snakes & Ladders, Go Fish).
  • Repeat clearly words and sentences your child has difficulty saying (Child: “Him “wunning” outside.” Adult: “Yes, he is. He is running outside.”).
  • Let your child make up and tell stories using puppets, toys, objects, books or pictures
  • Read longer stories to your child.
  • Give your child opportunities to regularly play with children his/her own age.

This material has been adapted from First Words (Ottawa-Carleton Preschool Speech and Language Service) and The Language Express (Preschool Speech and Language Services System of Lanark, Leeds and Grenville).

For Help

For help call the Central Referral and
Information Line
416-338-8255
416-338-0025 (TTY)

Or call your local Quadrant
East Quadrant 416-281-7445
Rouge Valley Health System Centenary Site

North Quadrant 416-491-1230
North York General Hospital

South Quadrant 416-921-4498
The Hanen Centre

West Quadrant 416-622-8315
The George Hull Centre

French Language 416-491-1230
Services (En Français)
North York General Hospital

Sensory Processing Disorder (SPD)

Fact Sheet

What is Sensory Processing Disorder (SPD)?

Sensory Processing Disorder (SPD), previously known as Sensory Integration Dysfunction –SID, is a complex disorder of the brain that affects developing children and adults. People with SPD misinterpret everyday sensory information, such as touch, sound, and movement. They may feel bombarded by information, seek out intense sensory experiences, or have other symptoms.

“Sensory processing” refers to our ability to take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful response. For most people, this process is automatic. When we hear someone talking to us, or a bird chirping, our brains interpret that as speech, or an animal sound, and we respond to that information appropriately.

Children who have a Sensory Processing Disorder (SPD), however, do not experience this process in the same way. SPD affects the way their brains interpret the information that they take in and also how they act on that information in terms of emotional, behavioural, motor, and other responses.

How is SPD manifested?

There are several types of Sensory Processing Disorder. Each one may result in a number of different behavioural and sensory patterns. Some of the most common behaviour patterns are described below:

Sensory-Avoiding Children

Some children with SPD are over-responsive to sensation. Their nervous systems feel sensation too easily or too intensely, and they feel as if they are being constantly bombarded with information.

Consequently, these children often have a “fight or flight” response to sensation. This condition is called “sensory defensiveness”. They may try to avoid or minimize sensations, such as by avoiding being touched, or being very particular about clothing.

These children may

  • respond to being touched with aggression or withdrawal
  • fear movement and heights, or get sick from exposure to movement or heights
  • be very cautious and unwilling to take risks or to try new things
  • feel uncomfortable in loud or busy environments, such as sports events or malls
  • be very picky eaters and/or overly sensitive to food smells

These children may be diagnosed with Sensory Over-Responsivity.

Sensory-Seeking Children

Some children are under-responsive to sensation. Their nervous systems do not always recognize the sensory information that is coming into the brain.

As a result, they seem to have an almost insatiable desire for sensory stimulation. They may seek out constant stimulation or more intense and/or prolonged sensory experiences, such as taking part in extreme activities or moving constantly.

Some behaviours seen in these children include

  • hyperactivity as they seek more sensation
  • unawareness of touch or pain, or touching others too often, or too hard (which may seem like aggressive behaviour)
  • taking part in unsafe activities, such as climbing too high
  • enjoying sounds that are too loud, such as a very loud television or radio

These children may be diagnosed with Sensory Under-Responsivity.

Motor Skills Problems

Other children with SPD have trouble processing sensory information properly, resulting in problems with planning and carrying out new actions. They have particular difficulty with forming a goal or idea, or developing new motor skills.

These children may have

  • poor fine motor skills, such as handwriting
  • poor gross motor skills, such as kicking, catching, or throwing a ball
  • difficulty imitating movements, such as when playing “Simon Says”
  • trouble with balance, sequences of movements, and bilateral coordination
  • a preference for familiar activities or play, such as lining up toys
  • a preference for sedentary activities, such as watching TV, reading a book, or playing video games

These children may get frustrated easily and may seem manipulative and controlling. Some may try to compensate with an over-reliance on language and may prefer fantasy games to real life. They may also try to mask their motor planning problems by acting like a “class clown” or avoiding new group activities.

These children may be diagnosed with Dyspraxia (sensory-based) Motor Planning Disorder.

Who is affected?

Studies show that as many as five percent of all children suffer from SPD or approximately 1 in 20 children. Yet despite this high rate, information and help for those with this disorder is still very limited. This lack of resources, combined with the fact that SPD often looks like other disorders, often results in misdiagnosis and inappropriate treatment for many children.

How is SPD diagnosed or detected?

While many children display the above behaviours, consider whether a child shows them more often and more dramatically than other children of the same age. Behavioural signs include

  • over- or under-sensitivity to touch, sounds, sights, movement, tastes, or smells
  • intense, out-of-proportion reactions to everyday experiences
  • resistance to changes in routines and moving from activity to activity
  • unusually high or low activity level
  • difficulty handling frustration
  • impulsivity, with little (or no) self-control
  • difficulty paying attention and staying focused
  • dislike of getting “messy” (food, sand, glue, paint, lotion), especially on hands or face
  • discomfort with certain clothing fabrics, seams, tags, waistbands, etc.
  • resistance to grooming activities such as brushing teeth, hair washing, or nail cutting
  • avoidance of touch or needing it more than other children
  • unusually high or low pain tolerance
  • fear of movement activities (e.g., swings, see-saw, etc.)
  • avoidance or excessive cravings for slides, swings, bouncing, rocking, jumping
  • poor balance, frequent falls, or awkward running
  • weakness or less coordination than other children his age
  • walking on tiptoes
  • touching of walls or furniture when walking
  • pushing, hitting, biting, or banging into other children although he is not aggressive
  • overly sensitivity to noise (e.g., sirens, vacuum cleaner, etc.)
  • hearing things you do not hear
  • not responding to you, although you know he can hear
  • getting dizzy easily, or never at all
  • squinting, blinking, or rubbing eyes frequently
  • having trouble reading
  • withdrawing, “tuning out,” or crying in group situations
  • avoidance of foods most children of same age enjoy
  • craving or avoiding particular food textures (e.g., chewy, crunchy, slippery, etc.)
  • frequently chewing on clothing or hair
  • difficulty with fine motor tasks (e.g., writing, buttons, stringing beads, using scissors, etc.)
  • poor handwriting and drawing skills
  • speech-language, motor skill, or learning delays
  • inconsistent sleep and hunger patterns

Many children show these signs for a variety of reasons. Some of these behaviours are appropriate at certain ages. Most toddlers can be impulsive (i.e. the terrific but “terrible” two’s). However, a 10-year-old who acts on every little impulse is a different matter. A strong dislike of wool clothing, discomfort making eye contact with strangers, or fear of a goat at the petting zoo that bleats loudly and unexpectedly all fall within the range of so-called typical sensory sensitivity for a child so long as these sensory experiences do not interfere with his/her day-to-day function. A child with sensory problems usually has maladaptive responses to everyday situations and consistently displays behaviours that are not age-appropriate and that cannot be dismissed.

Additional Resources:

STAR Institute for Sensory Processing Disorder – www.spdstar.org
This is a network for families and professionals with resources that can help you learn more about SPD and find effective treatment.

Books and Literature:

Parentbooks – www.parentbooks.ca
Parentbooks offers the most comprehensive selection of resources available anywhere – from planning a family, to everyday parenting issues for special needs of all kinds. The selection of resources for caregivers, counselors, therapists, educators, and clinicians serving the everyday and special needs of families is unequaled. It can help you find exactly what you need for a specific client or situation, and also help you build your professional library.

Building Bridges with Sensory Integration
By Ellen Yack, Shirley Sutton, & Paula Aquilla

Sensory Integration and the Child
By Jean A. Ayres

SenseAbilities – Understanding Sensory Integration
By M. Colby Trott, M.K. Laurel & S.L. Windeck

The Out-of-Sync Child
By Carol Stock Kranowitz

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder
By Lucy Jane Miller

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

Rett Syndrome

Fact Sheet

What is Rett Syndrome?

Rett Syndrome is a childhood neurodevelopmental disorder occurring primarily in girls. Loss of muscle tone is usually the first symptom. Other early symptoms may include problems crawling or walking and diminished eye contact. As the syndrome progresses, the child will lose purposeful use of her hands and the ability to speak. Compulsive hand movements such as wringing and washing follow the loss of functional use of the hands. The inability to perform motor functions is the most disabling feature of Rett Syndrome, interfering with every body movement, including eye gaze, and speech. A common misconception is that Rett Syndrome is a cognitive disorder.

How is it manifested?

  • a period of normal development between 6-18 months
  • normal head circumference at birth followed by a slowing of the rate of head growth with age (starting between 6 months and 4 years)
  • loss of purposeful hand skills at age 1-4 years
  • shakiness of the torso, which may involve the limbs, particularly when the child is upset or agitated
  • unsteady, stiff-legged gait
  • breathing difficulties (hyperventilation, apnea, air swallowing)
  • seizures (approximately 80% have epilepsy)
  • teeth grinding and difficulty chewing
  • intellectual development appears to be severely delayed, but true intelligence is hard to measure
  • impaired expressive and receptive language

Who is affected?

Rett syndrome affects approximately 1 in every 10,000-23,000 live female births, with symptoms usually appearing in early childhood.

How is it diagnosed or detected?

Doctors diagnose Rett Syndrome by observing signs and symptoms during the child’s early growth and development, and by conducting ongoing evaluation of the child’s physical and neurological status. Recently, scientists have developed a genetic test to confirm the clinical diagnosis of this disorder.

Additional Resources:

Ontario Rett Syndrome Association (ORSA) – www.rett.ca
The ORSA site is an information network on Rett Syndrome. It also has parent support groups, public awareness and conferences.

International Rett Syndrome Association (IRSA) – www.rettsyndrome.org
IRSA is a partnership of parents and professionals united in purpose to bring greater understanding of Rett Syndrome. The mission of the IRSA is to support and stimulate biomedical research, to increase public awareness of Rett Syndrome, and to provide information and emotional support to families of children with Rett Syndrome.

Rett Syndrome Research Foundation (RSRF) – www.rsrf.org
RSRT is a research and funding initiative whose website offers up to date information, news and event listings. They also provide a monthly newsletter to subscribers.

Books and Literature:

The Rett Syndrome Handbook: Second Edition
by Kathy Hunter

Understanding Rett Syndrome: A Practical Guide for Parents, Teachers, and Therapists
by Barbara Lindberg

Pathways to Learning in Rett Syndrome
by Jackie Lewis and Debbie Wilson

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

Prader-Willi Syndrome

Fact Sheet

What is Prader- Willi Syndrome?

Prader-Willi Syndrome (PWS) is a genetic disorder that affects males and females with equal frequency and affects all races and ethnicities. The syndrome is recognized as the most common genetic cause of obesity.

The symptoms of PWS are caused by the dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, such as hunger and satiety, temperature regulation, vomiting, fluid balance, puberty, and fertility.

How is it manifested?

Infants

  • hypotonia (weak muscle tone)
  • difficulty with feeding because of poor sucking ability
  • delayed motor and language development
  • respiratory difficulties

Children and Adults

  • short stature, small hands and feet (without growth hormone treatment)
  • intellectual impairment
  • learning deficits such as poor short term memory, difficulty with auditory discrimination
  • increased risk of obesity because of a persistent sense of hunger and lack of satiation (hyperphagia), low metabolic rate (60%) and high fat-to-muscle ratio
  • serious health problems if weight is not controlled (e.g., diabetes, cardiac and respiratory complications)
  • behavioural problems

Who is affected?

The current incidence of Prader-Willi Syndrome is 1 in 15,000 live births.

How is it diagnosed or detected?

A suspected diagnosis of PWS is usually made by a physician based on clinical symptoms. The diagnosis is then confirmed by a blood test. Families who are seeking a diagnosis or who have concerns about the risks should work with a genetics specialist who is knowledgeable about PWS and the latest in testing. The geneticist will arrange to have blood samples sent to an appropriate laboratory for testing.

Additional Resources:

Ontario Prader-Willi Syndrome Association (OPWSA) – www.opwsa.com
OPWSA is a non-profit charity. Their mission is to enhance the quality of life for individuals with Prader-Willi Syndrome. This website contains information for those interested in and affected by Prader-Willi Syndrome and has a support group for parents.

Canadian Prader-Willi Syndrome Organization (CPWSO)
CPWSO is a national, charitable association, dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families and interested professionals. Some of the organization’s objectives include promoting broader geographic interest in PWS, seeking increased diagnosis in infancy, liaising with the International Prader-Willi Syndrome Organization and with national affiliates around the world who share similar goals.

International Prader-Willi Syndrome Organization (IPWSO) – www.ipwso.org
IPWSO is an international organization, whose members are the national Prader-Willi Syndrome Associations. IPWSO is committed to enhancing the quality of life for people with PWS and their families, giving these children the best possible opportunities for living their lives to the fullest.

PWS Notes – www.pwsnotes.org
PWS Notes is designed to provide useful background on Prader–Willi Syndrome for parents and to organize medical information that may be helpful for future research directions. This resource was created by a PWS Mom and is particularly dedicated to the new generation of PWS children who are receiving the advantages of early interventions.

Books and Online literature:

Prader-Willi Syndrome-Guide 2005: A Guide for Families and Professionals
By Dr. M. A. Angulo (available at www.ipwso.org)

Management of Prader-Willi Syndrome
By Merlin G. (EDT) Butler, Phillip D. K. Lee, and
Barbara Y. (EDT) Whitman

Prader-Willi Syndrome: Development and Manifestations
By Joyce Whittington and Tony Holland

Physical Disability

Fact Sheet

What is a Physical Disability?

A disability is an umbrella term that covers impairments, activity limitations and participation restrictions. An impairment is a problem in body function or structure. Activity limitation is a difficulty encountered by an individual in executing a task or action. A participation restriction is a problem experienced by an individual with involvement in life situations.

A physical disability is any condition that permanently prevents body movement and/or control. There are many different types of physical disabilities.

How is it manifested?

Most common types

  1. Neuromuscular disorders: are a group of diseases that weaken the body’s muscles. The causes, symptoms, age of onset, severity and progression vary depending on the exact diagnosis and the individual. When a child has a muscular dystrophy, this means that the muscle fibres in the body gradually weaken over time. Children can have different types of Muscular Dystrophy. The most common type is Duchenne Muscular Dystrophy, which occurs only in boys. All types of Muscular Dystrophy are genetic even though other family members may not have the condition.
  2. Acquired brain and spinal injuries may result from permanent injuries to the brain, spinal cord, or limbs that prevent proper movement in parts of the body.
  3. Spina Bifida: is a neural-tube birth defect which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly, resulting in varying degrees of permanent damage to the spinal cord and nervous system. Infants born with Spina Bifida may have an open lesion on their spine where significant damage to the nerves and spinal cord occurs. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion. Even with no visible lesion, there may be improperly formed or missing vertebrae and accompanying nerve damage.
  4. Hydrocephalus comes from the Greek word “hydro”, meaning water and “cephalus” meaning head. It is a neurological condition that exists when excess cerebrospinal fluid (CSF) builds up in cavities, called ventricles, inside the brain. Fluid accumulates in the ventricles when the body produces more CSF in a day than it can reabsorb. This accumulation causes enlargement of the ventricles, resulting in Hydrocephalus. Hydrocephalus is usually treated by surgically implanting a shunt that takes excess CSF from the brain to another part of the body.
  5. Cerebral Palsy refers to a group of disorders that occur in infancy, affecting a person’s muscular and nervous systems. CP is not a disease or illness, but rather a broad term that describes a group of non-progressive brain disturbances that impair the developing brain’s ability to control some muscles, especially those affecting movement and posture.
  6. Stroke happens when blood stops flowing to any part of the brain. This interruption causes damage to the brain cells which cannot be repaired or replaced. The effects of the stroke depend on the part of the brain that was damaged and the amount of damage done.

How is it diagnosed or detected?

Some conditions may be detected at birth. Paediatricians can refer a child to a specialist if concerned about a child’s muscle tone and reflexes.

Additional Resources:

HYDROCEPHALUS CANADA (formerly Spina Bifida and Hydrocephalus Association of Ontario) – https://mybrainwaves.ca/
The organization has grown to provide a comprehensive and essential range of services for parents, families, youth and adults with Spina Bifida and/or Hydrocephalus (SP&H). Programs are rooted in the principles of self-help and personal support. The SBHAO also serves the broader community which includes: parents who receive pre-natal diagnosis of SB&H; extended family members; all women of child-bearing age concerned about the benefits of folic acid in the prevention of neural tube defects; and a wide spectrum of professionals in the social services, medical, health and educational fields.

Ontario Federation for Cerebral Palsy – www.ofcp.ca
The Ontario Federation for Cerebral Palsy is a non-profit, charitable organization with a mandate to address the changing needs of people in Ontario with Cerebral Palsy.

Muscular Dystrophy Canada – www.mdac.ca
Muscular Dystrophy Canada is committed to improving the quality of life for the tens of thousands of Canadians with neuromuscular disorders and funding leading research for the discovery of therapies and cures for neuromuscular disorders. The organization strives to ensure that people with neuromuscular disorders lead full and engaged lives by providing services that increase mobility and encourage independence.

Spinal cord Injury Ontario – www.sciontario.org

March of Dimes – www.marchofdimes.ca

Services for Persons with Disabilities – www.pwd-online.gc.ca
Access to services and information for persons with disabilities, family members, caregivers and all Canadians.

Books and Literature:

It’s OK to Be Me! Just Like You I Can Do Almost Anything!
by Jennifer Moore-Mallinos

Just One of the Kids: Raising a Resilient family When One of Your children Has a Physical Disability
by Kay Harris Kriegsman & Sara Palmer

The Survival Guide fo Kids with Physical Disabilities & Challenges
by Wendy Moss & Susan Taddonio

The Exceptional Child: Inclusion in Early Childhood Education
by K. Eileen

Creative Play Activities for Children with Disabilities – 2nd Edition
by Linda Rappaport

Children with Cerebral Palsy: A Parents’ Guide – Second Edition
Editor: Elaine Geralis

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

Packing a Child Friendly Snack

Many kindergarten programs include snack time in the daily routine. This is a great chance for young children to enjoy eating and to chat with their friends. However, it can be a frustrating time for children who have difficulty opening their lunch boxes or food containers. Let’s take a look at some suggestions on packing a snack that is healthy and easy for your child to eat.

Packing Ideas

At home, you probably serve food to your child on a plate, in a cup, or bowl. To help your child be prepared for snack time at school, serve snacks at home with the containers you will send to school. Show him how to open the container and reach for the food inside. Practise unpacking the snack with a picnic in the backyard, at the park, or even at home.

Lunch Box or Bag

To keep food from moving around, use an insulated lunch bag or box. Although a lunch bag is less sturdy, it is much easier to open and close for a child who has difficulty with zippers. If you have a lunch box with zippers, attach a key chain or piece of yarn to the zipper handle. This will make it easier to grasp and open.

Food Containers


Finger foods and sandwiches can be packed in plastic containers with lids. A clear container will let your child know what is inside. Lids with tabs that extend beyond the container are easiest for children to grab and pull off.

Drinks

Young children may have difficulty with drinking boxes because the straw is small and the juice will spill if the box is squeezed. Instead, you could buy your child a plastic ‘drinking box’ with an attached straw that folds. You can fill it with juice or water.

Cutlery

For school, it is best to pack finger foods. If your child needs a child-size spoon for his snack, but has trouble gripping it, cover it with a small piece of foam from a hair curler or insulation tubing, or build up the handle by wrapping masking tape around it several times.
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Snack Ideas

If your child is a fussy eater, try to include at least one food item you know your child likes in his snack. This will give him something to look forward to and help him focus on eating the snack.

Some schools do not allow children to bring food containing peanuts or other nuts. You may want to check with your child’s school regarding its policy. If your child has any food allergies, let the school know as soon as possible.

Finger Foods

Here are some healthy, bite-sized foods that fit in small containers:

  • mini crackers, pita, or cookies
  • grapes
  • orange segments
  • apple slices (squeeze a bit of lemon juice to prevent browning)
  • carrot or pepper slices
  • cheese cubes

Sandwiches

Packing a sandwich in a container with a lid will prevent it from getting squished. Cutting the sandwich into four pieces will make it easier for your child to handle. Here are some fillings that keep well and do not fall out of sandwiches:

  • jam and butter
  • sliced cheese and deli meat
  • tuna fish salad
  • hummus

Yogurts, Pudding and Jell-O

Yogurt, pudding and Jell-O are sold in child-size servings. These are great snacks if your child is able to peel the seal off and eat with a spoon. Choose a thick yogurt or pudding so that it does not slide off the spoon while your child is trying to eat. Put a sticker on the seal or mark it with the pen to help your child remember where to peel.

Involve Your Child in Preparing Snack


Involving your child in preparing the snack can encourage him to eat with enjoyment. This is a good way to teach your child about healthy eating and give him a chance to practise making choices.

You can create menu cards to give your child some choices when choosing a snack. Paste pictures of two or three available snack items on each card. Each card represents a category of food, such as drinks, fruits and treats. Your child can choose an item from each category.

You can also include your child in packing the snack. He can help you count the items and put them into containers.

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