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Creating A Child Information Binder

The “Child Information Binder” is a quick and easy reference tool for your family. It is a simple way to record your child’s strengths and needs, his likes, dislikes, and interests. Teachers or other professionals working with your child can use this information to support his on-going development.

You can print each page and insert them in a binder according to each section we’ve identified below. Complete each section and share it with your child’s teacher once he starts child care, or school.

Basic Information

Include basic information about your child like his name, date of birth and who to contact in case of an emergency.

Medical

Add information on any medical conditions experienced by your child. If your child takes certain medications, or uses adaptive equipment on a regular basis you can include guidelines on how to use them. Be sure to include any allergies your child may have.

Vision and Hearing

Complete this section if your child has a known vision loss or hearing difficulty. Include information on how accommodations can be made for your child.

Communication

Offer information that helps your child understand and be understood by others. If your child uses a communication binder with picture symbols, you can add a copy to this section.

Sensory

Inform others about your child’s sensory likes and dislikes. For example, your child may have a strong dislike of certain textures or fabrics.

Behaviour

Describe and explain how to best deal with behaviours your child may demonstrate.

Daily Routines

Provide details on daily routines like using the washroom, mealtimes, dressing, and sleeping. If your child uses picture sequences as a guide during these routines they can be included.

Favourite Activities

Ask your child to help you complete this section. It’s a great way to let him know how proud you are of his accomplishments. This section also provides your child’s teacher or caregiver with valuable information about favourite toys and activities.

Service Providers

Record contact information for each professional who works with your child. There is space to describe what they do for your child and your family.

Sharing the Binder with Professionals

The binder will have the information you need for team meetings with your child’s school, care providers, or doctor. Keeping the information organized will make it easier for you to focus and fully participate in the meeting.

Download the Child Information Binder template

Childhood Disintegrative Disorder

Fact Sheet

What is Childhood Disintegrative Disorder?

Childhood Disintegrative Disorder or CDD is a condition occurring in 3 to 4 year olds which is characterized by deterioration over several months of intellectual, social, and language functioning. CDD is also known as Disintegrative Psychosis or Heller’s Syndrome. This rather rare condition was described many years before autism but has only recently been “officially” recognized. Children with CDD develop a condition that resembles autism, but only after a relatively prolonged period of normal development. This condition differs from autism in the pattern of onset, course, and outcome. Although relatively rare, the condition probably has frequently been incorrectly diagnosed.

The cause of Childhood Disintegrative Disorder is unknown, but as with autism, it has been linked to neurological problems. The child with this disorder loses communication skills, has regression in non-verbal behaviours, and significant loss of previously-acquired skills. The symptoms of CDD resemble those of autism.

How is it manifested?

  • loss of social skills
  • loss of bowel and bladder control
  • loss of expressive or receptive language
  • loss of motor skills
  • lack of play
  • failure to develop peer relations
  • impairment in nonverbal behaviours
  • delay in, or lack, of spoken language
  • inability to start or sustain a conversation

Who is affected?

The cause of CDD is unknown. It does seem to have some association with seizures and abnormal brain activity as seen on an EEG. Children diagnosed with CDD often have a history of an illness just prior to the appearance of the regressive behaviours. Boys outnumber girls in occurrence. It is considered a rare disease.

How is it diagnosed or detected?

The child tends to have normal development through age 3 to 5 years and then over a few months undergoes a gradual loss of previously established abilities (e.g., language, motor, or social skills). Generally the diagnosis is made with a loss of functioning in at least two areas as described above.

Additional resources:

Geneva Centre for Autism – www.autism.net
Geneva Centre for Autism is a multi-service agency providing direct clinical services to families living in the Greater Toronto Area (including Peel, Halton, Simcoe and York Regions). They also provide information, resources and consultation and training services to individuals with Autism Spectrum Disorders (ASD), parents, service providers, educators and other professionals across Ontario, Canada and internationally.

References:

  • Diagnostic and Statistical Manual of Mental Disorders (4th ed.). American Psychiatric Association
  • Diagnosing Autism and Other Pervasive Development Disorders [excerpt from Autism: Basic information (3rd ed., pp. 6-7)]. By T. Boyle

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

Cerebral Palsy

Fact Sheet

What is Cerebral Palsy?

Cerebral Palsy is an umbrella term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of, or damage to, motor areas in the brain that disrupts an individual’s ability to control movement and posture.

Symptoms of Cerebral Palsy include difficulty with fine motor tasks, such as writing or using scissors, difficulty maintaining balance or walking, and/or involuntary movements. The symptoms differ from person to person and may change over time. Some people with Cerebral Palsy are also affected by other medical disorders, including seizures or developmental concerns, but Cerebral Palsy does not always cause a developmental handicap. Early signs of Cerebral Palsy usually appear before 3 years of age. Infants with Cerebral Palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, and walk. Cerebral Palsy may be congenital, or acquired after birth. Several of the causes of Cerebral Palsy that have been identified through research which are preventable or treatable include head injuries, jaundice, Rh incompatibility, and rubella (German measles).

How is it manifested?

  1. muscle tightness or spasm
  2. involuntary movement
  3. disturbance in gait and mobility
  4. abnormal sensation and perception
  5. impairment of sight, hearing, or speech
  6. seizures

Classification by Number of Limbs Involved

  • Quadriplegia – all four limbs are involved.
  • Diplegia – all four limbs are involved. Both legs are more severely affected than the arms.
  • Hemiplegia – one side of the body is affected. The arm is usually more involved than the leg.
  • Triplegia – three limbs are involved, usually both arms and a leg.
  • Monoplegia – only one limb is affected, usually an arm.

Classification by Movement Disorder

  • Spastic Cerebral Palsy – the most common form, affecting 70-80% of individuals with Cerebral Palsy. This type of Cerebral Palsy keeps the muscles in a constant state of increased involuntary reflex.
  • Athetoid Cerebral Palsy – characterized by a slow and uncontrolled movement and affects 10-20% of individuals with Cerebral Palsy.
  • Ataxic Cerebral Palsy – is very rare and affects a person’s sense of balance and depth perception. Individuals with this type of Cerebral Palsy often have difficulty with coordination, walk unsteadily with a wide-based gait, placing their feet unusually far apart, and experience difficulty when attempting quick or precise movements, such as writing or buttoning a shirt. Ataxic Cerebral Palsy is diagnosed in approximately 5-10% of individuals with Cerebral Palsy.
  • Mixed Forms – it is common for an individual to have symptoms of more than one of the previous three forms. The most common mixed form includes Spastic and Athetoid movements, but other combinations are also possible.

Who is affected?

Cerebral Palsy is not usually diagnosed until a child is about 2 years of age. About 2 to 3 children in 1,000 over the age of 3 years have Cerebral Palsy.

How is it diagnosed or detected?

Cerebral Palsy is diagnosed mainly by evaluating how a baby or young child moves. A physician will evaluate the child’s muscle tone, which can make them appear floppy. Some babies have increased muscle tone, which makes them appear stiff, or variable muscle tone (increased at times and low at other times). The physician will check the baby’s reflexes and look to see if the baby has developed a preference for using his right or left hand. While most babies do not develop a hand preference (become right- or left-handed) until at least 12 months of age, some babies with Cerebral Palsy do so before six months of age. Another important sign of Cerebral Palsy is the persistence of certain reflexes, called primitive reflexes, that are normal in younger infants, but generally disappear by 6 to 12 months of age. The physician also will take a careful medical history, and attempt to rule out any other disorders that could be causing the symptoms.

CAT scans (Computerized Axial Tomography) and MRI (Magnetic Resonance Imaging) can help identify lesions in the brain. This technology may enable some children who are considered at risk of having Cerebral Palsy to be diagnosed very early. However, for the majority of people with Cerebral Palsy it will be months, and sometimes years, before a diagnosis is confirmed.

Additional Resources:

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.

The Participating Families Program supports and responds to requests from families and parents with children with Cerebral Palsy by offering information and resources that will assist in caring for their child. They also respond to inquiries from professionals, organizations and students regarding Cerebral Palsy.

Cerebral Palsy Guide

https://www.cerebralpalsyguide.com/

Cerebral Palsy Guide is a national support organization based in the United States, dedicated to educating individuals and families about cerebral palsy. The organization strives to provide answers and guidance to ensure that families receive the assistance that they need to help improve their overall quality of life.

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

Bedtime Routines

“I don’t want to go to bed! I’m thirsty! I need to go to the bathroom! I’m scared of the dark!” If you’ve heard your child repeat these phrases night after night, chances are you may be struggling with bedtime. Bedtime can be a nightly challenge for parents when your child resists going to sleep, or when she awakens in the middle of the night looking for mom and dad.

Understanding why children have sleep time difficulties

Sleep problems are very common in children of all ages. A child may experience poor sleep during a brief period in their life, like holidays, a stressful event, or illness. For some children, not being able to settle down to sleep may occur only occasionally and for others it may be more frequent.

Children who are well rested are generally happy, healthy and feel at their best. They’re able to learn, imagine, create, and socialize with ease after a good night of sleep. Research indicates that children (and adults) who are sleep deprived have more trouble controlling their emotions. In other words, the part of the brain that helps us to control our actions and our response to feelings is greatly affected by lack of sleep.

Children who do not get enough sleep may have difficulty waking up in the morning, may be irritable (ill-tempered), easily frustrated, or may fall asleep during play time or dinner. This may get in the way of their learning, their social interactions and their active involvement at school, or in their child care program.

By understanding the reasons children have bed time difficulties, you can help your child deal with her sleep issues so that she can become a happy, independent sleeper and bedtime will become a pleasant end to the day for the whole family.

There are a number of factors that can interfere with children falling asleep and staying asleep throughout the night. Here are some of the more common ones that you may be experiencing with your child:

  1. Separation Anxiety: For some children, bedtime means separation from their parents and the activities of the day. They are moving away from excitement and stimulation into darkness and being alone. Your child may feel anxious if you are not there, or if you try to leave her room and so she is unable to relax and sleep.
  2. Power Struggles: Power struggles are common from 18 months of age and on, as children begin to express their independence. Some children try to show this independence by resisting going to bed.
  3. Night Time Fears: Fears of the dark and imaginary monsters are especially strong for children between the ages of two to six years old. Although fears are common in preschoolers, intense fright, especially when accompanied by panic, is unusual and may be a sign that help from a professional is needed.
  4. Nightmares: Nightmares are quite common and most children experience them at some time or another. The child will awaken from the frightening dream and remember what happened quite clearly. Sometimes she can be comforted and settled back to sleep, but other times she may need extra reassurance to do so.
  5. Other common causes of sleep problems include:
    • Not being able to relax without some form of help.
    • Not being able to recognize that they are tired.
    • Wanting more time with a parent (especially if the parent works outside the home).
    • Physical environment. For example, the temperature may be too hot, or too cold, lighting may be too bright, or too dark, the covers may be too light, or too heavy, or sounds in the room or home may be too noisy.
    • Stress or worries about child care, school performance, friends, family conflicts, or other problems in their lives.
    • Inappropriate napping. A child may have very long, or too many naps during the day.
    • The presence of parents, brothers, or sisters in the same room who may be providing distractions such as coughing, snoring, talking, etc.
    • Parents who are over-anxious themselves and may be constantly checking in on their child.
    • Children with special needs. Research indicates that half of all children with special needs experience some kind of sleep difficulty.

Setting the Stage for a Good Night’s Sleep

There are many steps you can take to deal with your child’s sleep problems. We’ve already discussed the most important first step which is recognizing the possible cause of her sleep difficulties. The next step is looking at what you can do before your child’s bedtime to help ease her transition into sleep and help the routine run more smoothly.

Decide on a bed time

Decide on a specific time for your child to go to bed and try your best to stick to it everyday. There may be days when you can’t and this is okay as long as you get back on track with a daily, consistent schedule. Getting your child to bed at the same time every night provides her with a predictable routine. Keep in mind that you can’t force your child to fall asleep, but you can enforce the rule that she must be in her bed at a set time.

Also, it’s important to have consistent wake up times as well. If you don’t, this may make it more difficult for your child to go to sleep at night. Establishing a regular wakeup time will again provide your child with the structure and predictability she needs in her daily routine.

Establish bedtime rules

Children thrive on structure and order. They need rules in order to understand what is expected of them. This is especially important at bedtime. Establish clear, simple rules and review them with your child regularly. If you stick to these rules on a daily, consistent basis, children will accept the structure and will be more likely to follow the rules. Examples of bedtime rules might be: “No bouncing on the bed”, or “No drinking milk in bed”. You can use real photos or picture symbols to provide your child with a visual reminder to reinforce the rules.

Set up the room

Make sure the curtains or blinds in your child’s room do not let in too much light – this will help prevent your child from waking up too early in the morning. Keep lights dim in the evening as bedtime approaches. Also, check the bedroom temperature. It should be neither too hot nor too cold. Reduce any loud, or distractable noises around your child’s room. Consider soft music, or the soothing sounds of an air filter or fan, bubbling fish tank, or recording of water falls to block out background noise that might disturb your child.

Provide choices

Whenever possible, allow your child to make choices within her routine. For example, she might choose which pyjamas to wear, which stuffed animal to bring to bed, or what music to play. This gives your child a sense of control over the routine.

Allow a comfort item

Allow your child to take a favourite teddy bear, doll, toy, or special blanket to bed each night, so she has something with which to cuddle. This can also help comfort your child and give her a sense of security, or being safe.

Avoid sugar and caffeine

Try to limit the amount of caffeine and sugar your child eats or drinks before bedtime. Beverages such as colas and chocolate contain sugar and caffeine and may be a factor in your child remaining awake.

Consider effects of medication

Find out if medications are contributing to the problem. Talk to your doctor about any medications your child is taking. Some of them have a stimulatory effect and make it harder for children to settle down to sleep.

Cut out afternoon naps

Cut out afternoon naps if they are not needed. If your child does not seem tired at night and takes a nap during the day, either eliminate the nap time or reduce it to only 30 to 60 minutes.

Encourage exercise

Make sure your child gets enough physical activity during the day. Exercise, as well as fresh air, should be part of your child’s everyday routine. It’s as important as any other part of your child’s day. Ideally, this active time should not be too close to bedtime, as this may excite your child and make it difficult for her to fall asleep.

Schedule play times

Try to schedule daily play times with your child fairly close to the time she goes to sleep. This may help to prevent her fighting you at bedtime just to get your attention. Choose a quiet, relaxing and interactive activity that you will both enjoy. If she prefers to play alone, or you have something to do yourself, offer her an activity such as blocks, books, or puzzles.

Encourage relaxation

Help your child release her physical tension by stretching and relaxing her body in a variety of fun ways. Try these relaxation strategies with your child: breathing in and filling up like a balloon, slowly raising your arms and legs one at a time as if they are very heavy and then letting them drop back quickly, or wrinkling and then relaxing your face. Providing your child with a gentle massage will also help her to relax.

Establishing a Consistent Bedtime Routine

Sometimes parents don’t have much energy left at the end of a long day. Creating a consistent bedtime routine can help make this time successful and relaxing for both you and your child. Keep in mind that a bedtime routine might take 30 – 60 minutes. Here’s an example of a routine Jenny and her dad follow each night:

  • Dad gives Jenny a 5-minute warning before the actual bedtime routine starts, so Jenny can finish playing and tidy up her toys.
  • Dad gets the bath ready for Jenny. She gets to play in the bathtub for about 10 minutes.
  • Jenny and her dad have a healthy snack such as yogurt or warm milk and sugar-free cookies. Dad remembers to avoid offering any caffeine or sugary foods and beverages.
  • Jenny brushes her teeth.
  • Jenny uses the toilet.
  • Jenny puts on her pyjamas and gets to choose a stuffed toy to cuddle.
  • Dad sits with Jenny in bed and reads her a book.
  • When the story is finished, Dad says goodnight to Jenny and turns off the light.

It often helps to use a picture board to show each step of the routine so your child knows exactly what to do next. Here are the pictures that Jenny’s dad uses every night:




A Word of Caution

If your child remains highly upset despite your repeated efforts to deal with her sleep difficulties, consult with your paediatrician, or an early childhood professional. Consider getting help for your child if:

  1. She has sleep problems after you have tried an approach consistently for one month or longer.
  2. She is very sensitive and becomes upset over whatever you do to try to get her to sleep.
  3. She appears traumatized by the whole experience.
  4. She shows signs of a medical or physical condition that you think might be interfering with her sleep.

You may want to try keeping a Sleep Diary. A Sleep Diary allows you to record information from every bedtime that will enable you to see any unusual patterns of sleep. Take a look at the For More Information box for details.

Also, you should consider getting help for yourself if you have difficulty following through with a “sleep plan” once you have created one and/or you are negatively affected by your child’s sleep habits (e.g., exhaustion, anger, resentment towards your child, spouse, or others). You are the expert when it comes to your family and child. If you have a concern, trust your instincts and find someone trained to help you.

Alzheimer’s disease and other dementias

woman painting

Dementia is a syndrome consisting of a number of symptoms that include loss of memory, judgment and reasoning, and changes in mood and behaviour. These symptoms may affect a person’s ability to function at work, in social relationships or in day-to-day activities.

Alzheimer’s disease, the most common form of dementia, accounts for 64% of all dementias in Canada. (Material sourced from Alzheimer Society of Toronto https://alz.to/ )

Alzheimer’s disease and Dementia (workshop)

An introduction to Alzheimer’s disease and dementia including what is Alzheimer’s disease, the differences between Alzheimer’s disease and dementia and some of the signs and symptoms of Alzheimer’s disease.

Play

Dementia: Changing Assumptions

Improve your understanding of dementia & Alzheimer’s disease, best practices and the resources available for supporting individuals with developmental disabilities exhibiting dementia.

Play

Articles

What is Dementia

Dementia is a syndrome consisting of a number of symptoms that include loss of memory, judgment and reasoning, and changes in mood and behaviour. These symptoms may affect a person’s ability to function at work, in social relationships or in day-to-day activities. http://alz.to/learn-about-dementia/what-is-dementia/

What is Alzheimer’s Disease

Alzheimer’s disease is a progressive, degenerative disease of the brain, which causes thinking and memory to become seriously impaired. It is the most common form of dementia. http://alz.to/learn-about-dementia/alzheimers-disease/

Alzheimer’s Treatment

While there is currently no cure for Alzheimer’s disease and no treatment that will stop its progression, there are several medications available that can help with some symptoms. These medications can slow down the decline of memory, language and thinking abilities. http://alz.to/learn-about-dementia/alzheimers-treatment/

Early detection screening tool

NTG-Early Detection Screen for Dementia (NTG-ESD)

U-First Training

U-First! is a proven and effective approach to working with people with dementia. Through dialogue and a case-based approach, learners will have more confidence in working with people with responsive behaviours. Training is especially designed for people working in community care, acute care, and long-term care. For more information visit

www.u-first.ca

The Alzheimer Society Music Project

The Alzheimer Society Music Project was created in response to overwhelming evidence showing the beneficial effects of music and stimulation on people living with dementia.

Through the Music Project, personalized playlists are provided to support a person living with dementia and improve their quality of life at no cost to eligible families.

Project Participants Receive: One iPod & charging accessory, One set of over-the-ear headphones and free music setup. http://musicproject.ca/

Alive Inside Clip of Henry

This is an excerpt from Alive Inside, a documentary about the Music and Memory nonprofit project, a film by Michael Rossato-Bennett. https://www.youtube.com/watch?v=QG7X-cy9iqA

The Toronto Dementia Network

The Toronto Dementia Network collects, organizes and disseminates information about dementia related services and events in Toronto. It is a widely used resource directory funded by the Toronto Alzheimer’s Association. https://tdn.alz.to/

Health and Wellness

bike riding

 

Everyone’s health matters

Good health is important to all of us. When you are healthy, you can go out with friends and family, do sports, go to school, or work better. People with developmental disabilities are more likely to have illnesses like diabetes, asthma or heart disease than people without a disability.

This video explains how healthy people with developmental disabilities in Ontario are, and what kind of healthcare they get. Not everyone is as healthy as they could be, and not everyone is getting the healthcare that they need.

A Talk About Health, by Health Care Access Research and Developmental Disabilities (H-CARDD), CAMH, 2015 [20 minutes]

Going to the Doctor

The more the doctor knows about you, the more they can help make the visit better for you. Use the “About My Health” form to write down information about you, your medication, and your health before you go see the doctor. You can fill it out yourself or ask someone to help you. Give this form to your doctor or nurse at the start of any healthcare visit. Get the “About My Health” form at the Surrey Place website.

Sometimes it is difficult to remember everything that the doctor said. Ask your doctor or someone who comes with you to the doctor’s office to fill out the “About My Healthcare Visit” form. Write what you need to do after the healthcare visit. Get the “About My Healthcare Visit” form at the Surrey Place website.

Even if you don’t feel sick, it is still important to see your doctor once every year for a check-up. In this video Andrew explains what happens at a healthcare visit and how you can prepare.

Going to the Doctor, by Health Care Assess Research and Developmental Disabilities (H-CARDD), CAMH, 2016 [5:30 minutes]}

Getting a blood test

Sometimes the doctor needs to know more about your health and will ask you to get a blood test at a health lab. This video shows you what exactly happens when going for a blood test.

Many people feel nervous about a blood test. Listen to Francie, who has some tips on how to make getting a blood test easier.

What happens when you go to get bloodwork done, by Surrey Place, 2019, [3:00 minutes]

Getting a Blood Test, by Health Care Access Research and Developmental Disabilities (H-CARDD), CAMH, 2016 [4:30 minutes]

Going to the hospital

When you go to the hospital or emergency room, people will ask you many questions. Bring the “About My Health” form to have all your information ready for the doctors and nurses.

This video explains what happens when you go to the emergency department.

What to expert wen you go to the ER, by CAMH, 2014 [3:10 minutes]

Find more tips on how to prepare for a visit to the emergency department in this checklist.

Prepare a crisis plan with your family or staff for future emergencies.

Health problems you should check for regularly

Sometimes you don’t notice when you are sick. At a check-up you can ask for tests to see if you are healthy. Some important health problems to check for are: cancer, diabetes, pap test.   Here are some other things to know about health.

When you are just not feeling happy

Mental health is about how you feel and what you think. Sometimes you do not feel sick in your body, but you just don’t feel happy or enjoy doing activities anymore, or you worry a lot. Listen to a conversation with Special Olympics athletes about what you can do when you don’t feel happy and how you can help others who feel that way. There are 4 videos in this series.

A Conversation About Mental Health with Special Olympics Athletes, by H-CARDD and Special Olympics, 2016}

How direct support professionals can help

We all like to have someone in our corner in difficult situations. Staff can make a big difference in supporting people with developmental disabilities in their health. Learn how to prepare together for a visit to the doctor.

Caption: Everybody Wins: Preparing for a Healthcare Visit. By, Health Care Access Research and Developmental Disabilities and Vita Community Living, 2019 [7:06 minutes]

During the healthcare visit support workers can help with communication. In this video you see how to use the About My Health and My Healthcare Visit forms to share important information with the doctor. Julie also shares how a few accommodations can really be a game changer for her healthcare visit.

Caption: The Game Changer: The Doctor Visit, by Health Care Access Research and Developmental Disabilities and Vita Community Living, 2019 [7:55 minutes]

Support staff can also help track common health issues like bowel movements, sleep and weight using monitoring charts. Download health monitoring charts.

For a complete healthcare toolkit for direct support professionals, visit the website Nuts and Bolts of Health Care. The toolkit includes, videos, tools and newsletters with practical tips on primary and emergency care.

More information

Community Networks of Specialized Care (CNSC): this network links specialized services across Ontario, improves services delivery and builds capacity in the community. The team includes Health Care Facilitators across Ontario. This website has information for service providers and direct support professionals Read more.

Developmental Disabilities Primary Care Program (DDPCP): this program develops guidelines, resources and tools for health care providers and caregivers to improve the health of people with developmental disabilities. Read more.

Health Care Access Research and Developmental Disabilities (H-CARDD): this is a research program investigating the health status and health service use of adults with intellectual and developmental disabilities in Ontario. On this website you will find research information and many clinical tools and health care resources for patients,caregivers, and health care providers. Read more.

Youth

Successfully Navigating Puberty with Teens with ASD and Developmental Disabilities

Presented by Dr. Becca Tagg , North Carolina Licensed Psychologist; Director , Del Mar Center for Behaviour Health
Puberty and adolescence require a new set of skills. This webinar provides a good foundation and tips on how you can help your son or daughter manage and grow through the many changes of the teen years.
Play

From child to adult healthcare

When you turn 18, your health care will change. You will see new doctors and nurses who do not know you so well as the health care team you have been seeing since you were a child. You can prepare for this change together with your doctors and family. Use the {SHARE Transition Checklist} to talk about things that are important to you when you turn 18.

Transition Checklist

Young Adult Health Transitions: Primary Care, Community Resources and Care Planning

A presentation about the use effective planning and decision-making to improve wellbeing of persons with developmental disabilities during transitions from youth to adult services. Presented by: Angela Gonzales & Lindsay Wingham-Smith. Play video

The health check: What is it and what do staff need to know?

This is a no-nonsense discussion on the importance of the health check and how you as staff can make a difference with the individuals that you support.Read more

 

Health and Wellness for Staff and Family caregivers

Developmental Sector Professionals’ Stress-related Health

Professional Fatigue: Surviving the Front Lines (Shared Learning Forum November 2013)

Presented by: Angie Gonzales, RN MN Health Care Facilitator, Toronto Network of Specialized Care, Surrey Place Centre

Play

Mindfulness Tools for Social Workers

Professional Fatigue: Surviving the Front Lines (Shared Learning Forum November 2013)

Presented by: Sue Hutton, Community Living Toronto

Play

Mindfulness: Making Moments Matter

Many people have heard about the concept of mindfulness, but are unsure what it means, and why it might be helpful in their lives and/or the lives of the people they support.

Mindfulness Matters Article

Other Resources

Health Booklets

The My Health Booklets are a series of health education booklets produced by Surrey Place Centre and funded by the Ontario Government, Ministry of Children, Community and Social Services. The purpose for the series is to offer guidance to people with developmental disabilities in a clear and simple manner. The series consists of eight booklets now available online, with subjects ranging from general health issues to more specific health topics.

Not Skirting the Issue: Discovering Ways to End Poor Health Care for Women with Developmental Disabilities

Women with developmental disabilities are less likely than other women in Ontario to have a pap smear which is how doctors screen for cervical cancer. They are also less likely to get a mammogram to detect breast cancer. Why does this matter? If we have health problems and they aren’t detected early, small problems can become big ones, and can even lead to death. Every woman has a right to get health care early before problems become too serious. Read more

Movember and Men’s Health: What You Should Know!

While men in general can have health problems that they often ignore because they don’t like to talk about their health and how they are feeling, having a disability makes it even harder. Read more

Medication, Education and Advocacy: Improving How People With Developmental Disabilities Use Medication

Medication use is very common for individuals with developmental disabilities. But medications can also lead to problems when you struggle with how to report whether a medication helps or not, or when others aren’t alert to the impact of the side effects. Read more

Scoop on Poop

Being regular, particularly in adulthood, is an “irregular” conversation starter. It is one of those topics that seem too “private” or perhaps too “stinky” to discuss in public. But the reality is that how we feel each day is closely tied to our bowels. Read more

Building Sensory Gardens, Rooms & Kits: Enhance well-being, develop coping skills and reduce challenging behaviour, through Sensory Engagement

When considering the issue of quality of life for people with developmental disabilities, and particularly with those who have challenging behaviour, it is important to consider the role of sensory
engagement in a holistic biopsychosocial approach. Read more

Primary Health Care of Adults with Developmental Disabilities Guidelines

The Developmental Disabilities Primary Care Initiative has brought together clinicians with expertise in the care of adults with developmental disabilities (DD) to improve primary care and quality of life for adults with developmental disabilities (DD).

With leadership and coordination from Surrey Place Centre, and funding from the Ontario Ministry of Children, Community and Social Services, the Ontario Ministry of Health and Long-Term Care, and Surrey Place Centre Foundation, Guidelines and Tools have been developed to help primary care providers to follow best practices in the care of these patients. These guidelines and tools are utilized in the Training Course for primary care providers that are offered on a yearly basis.

Hurry Up and Wait Your Turn: How to win at the waiting game

The waiting room can be a very difficult and often chaotic environment for anyone. Below are some helpful tips and tricks to help win the waiting game. It is important to remember that the way one can support a person during a doctor’s visit will depend on their individual needs and preferences. http://www.vitacls.org/UserFiles/uploads/files/sss%20vol%207%20issue%203%20-%20ENGLISH.pdf

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Using emergency services: What clients with developmental disabilities should expect

Jillian Carlyle of the CAMH Dual Diagnosis Service talks about what clients and families should expect and prepare for when going the emergency department. Play video

In Case of Emergency, Please Read: Ideas and Strategies for Supporting People with Developmental Disabilities Receiving Emergency Care

This article offers some practical tips about how to make emergency visits as good as they can be, and also outlines some steps we can all take to reduce the likelihood of having to go to the hospital in the first place. read more

Strategies for caring for people with developmental disabilities in medical settings

Useful strategies to improve communications and gather more comprehensive information on people with developmental disabilities who come to medical settings requiring medical support.

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Toronto Central Health Integration Network (LHIN) Overview: Who We Are

After the presentation Kim gives a description about her role as a care coordinator for client’s that receive services/supports through TC LHIN and how this intersects with the developmental sector services/supports.Toronto Central LHIN: Overview who we are

Progress in Disparities of People with Developmental Disabilities In Health Care

Excerpt from “Neurodevelopmental Disabilities” (Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series)

Presenters: Angie Gonzales and Aamir Khan, Community Network of Specialized Care.

Community Networks of Specialized Care

The purpose of the Community Networks of Specialized Care is to enhance service to adults with a developmental disability who need specialized care for co-existing mental health and or/ behavioural issues in Ontario. There are 4 networks: Northern Region, Southern Region, Eastern Region and Central Region. http://www.community-networks.ca

Collaborative Planning for Complex Individuals

Neurodevelopmental Disabilities

Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series:

Through collaboration and coordination, the Community Network of Specialized Care works to build efficient and effective cross-sectorial specialized service systems that support people with a developmental disability and mental health challenges (dual diagnosis) and/or challenging behaviour.

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Autism & 90-90-90: Reaching for the Goal

Presenting preliminary findings on ACT’s “ASD & HIV Prevention Needs Assessment” survey and explaining the impact the autism spectrum has on negotiating safer sex, accessing services, and community connection.

Cognitive Impairment related to Narcotic Use

Excerpt from “Neurodevelopmental Disabilities” (Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series)

Presenter: Lisa Orsi, Centre for Addiction and Mental Health (CAMH)

Using Visual Sequences to Teach Self-Care Skills

Learning new self-care tasks such as dressing oneself takes time and practise. A visual sequence is basically a series of pictures showing the steps that are necessary to complete a task.

Breaking a self-care task into several steps (a process also known as task analysis) will make it easier for your child to follow along when you begin teaching him how to do it. As adults, we sometimes forget how many steps are involved in a task because we have been doing it for so long. Let’s take ’brushing teeth‘ as an example. Here are just some of the steps involved: finding one’s toothbrush, getting some toothpaste, opening toothpaste, squeezing toothpaste onto the toothbrush, opening one’s mouth, brushing teeth gently, and rinsing one’s mouth with water. Even a simple task like brushing teeth can be very complex.

Now, list the steps to a self-care task that you would like to teach your child. Once you have the steps listed, make a note of which steps he is able to do and which ones may be difficult. This will help you plan which steps to focus on when you begin teaching.

When creating a visual sequence remember that it is difficult for children (and adults) to absorb more than six or seven steps at a time. Once you have listed the steps of a self-care task you are ready to create a visual sequence. This will help your child:

  1. Know which objects he needs to complete the task.
  2. Learn how he can use these objects.
  3. Understand the sequence of actions he must follow to complete the task.

Types of pictures to use

tothbrush

You can use photos of a sibling completing the self-care task, cut pictures from a magazine, or draw them yourself. You can also visit the Visuals Engine to use picture symbols. Make sure that the pictures are clear and that your child will be able to identify the objects in the photos or drawings. It is a good idea to label each step in the sequence with words as a reminder for everyone involved in your child’s self-care routines. For example, the words “Get toothbrush” can be printed above a picture of a toothbrush. Using the same words to describe the actions will make it easier for your child to learn the steps in the sequence.

Teaching the new skill

When teaching your child a new skill, it helps if the space you are using is organized and free of distractions. For example, in the bathroom, you can set aside a small space in a cabinet or on the counter with the objects your child needs to brush his teeth. Providing him with a colourful toothbrush and special ‘kid-friendly’ toothpaste will help make ‘brushing teeth’ more enjoyable.

Introduce the visual sequence by posting it at your child’s eye level, pointing to the picture of each step, and reading its label before completing the action. This teaches the connection between a specific picture and action. Once your child is familiar with the visual sequence, you can ask him to say or point to the next step.

Some steps of the task may be physically difficult for your child to learn even though he knows what to do. If he becomes frustrated, ask if he needs help and guide him through the step hand over hand. It is OK if you need to help your child with most of the routine. The important part is to praise him for his efforts.

In time, you may notice that your child is able to complete some of the steps on his own and with little supervision. At this time, you can decrease the number of pictures in the visual sequence. For example, ‘get toothbrush and toothpaste’, ‘brush teeth’, ‘rinse mouth’. Once you are sure that your child is brushing his teeth properly you may want to allow him to do it on his own once a day. Be sure to leave the sequence posted as a reminder!

Remember that visual supports make it easier for a child to understand and communicate. Using visuals to teach your child self-care skills is the first step towards independence.

Tying Shoe Laces Sequence

Many children need support when learning new skills. Breaking a skill down into smaller steps can help a child learn one step at a time. The number of steps a skill or task is broken into depends on the needs of your child.

You may want to provide a child with a visual sequence. This is basically a series of pictures showing the steps that are necessary to complete a task. You can use real photos, line drawings, or picture symbols to create your own visuals. When using a visual sequence, post it at the child’s eye level, point to the picture, and read the step out loud before completing the action.

You can also use the pictures to create a sequencing game of your own. Simply print the pictures, cut them out, and have your child practise putting the steps in order. You can also create a matching game by making two copies of the sequence. Glue one copy to a piece of construction paper in the correct order and have your child use the other set to match the cards.

Here’s an example of a ‘tying shoe laces’ sequence:

  1. Pinch the laces.
  2. Pull the laces.
  3. Hang the ends of the laces from the corresponding sides of the shoe.
  4. Pick up the laces in the corresponding hands.
  5. Lift the laces above the shoe.
  6. Cross the right lace over the left one to form a triangle.
  7. Bring the left lace toward you.
  8. Pull the left lace through the triangle.
  9. Pull the laces away from one another.
  10. Bend the left lace to form a loop.
  11. Pinch the loop with the left hand.
  12. Bring the right lace over the fingers and around the loop.
  13. Push the right lace through the hole.
  14. Pull the loops away from one another.
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