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When your Child is Diagnosed with Special Needs

Parenting a child is perhaps one of the most challenging tasks we will face during our lifetime. Whether we consider it a job, art, or craft there are few experiences in life that prepare us for the many ups and downs that come with this unique responsibility. Nonetheless, most parents manage to raise their children remarkably well.

In addition to the usual stresses and strains of parenthood, parents of children with special needs face other pressures and must learn to cope with problems in ways that will enhance, rather than, hinder the growth of their child.

Diagnosis

Children are diagnosed at different ages. Parents may learn about a condition prior to a child’s birth, immediately after birth, or they may identify concerns more slowly as the child matures.

Regardless of when your child receives a diagnosis, your reaction may be strong and often traumatic. No parent is prepared for this news. Upon learning that your child may have special needs, most parents react in ways that have been shared with all parents before them who have been faced with this challenge.

The following is a look at some commonly reported reactions to parenting a child with special needs:

Reactions

A common first reaction is denial. Denial, in fact, may act as a protective device, giving parents additional time to adjust to and absorb information. Denial quickly merges with anger. Anger may be directed at the medical professional giving the news, a spouse, family members, and the child himself. At times, the anger will seem so intense parents feel that the world is against them. Parents may avoid medical professionals, family, friends, and even neighbours who confront them with a reality they are not ready to accept.

Fear and guilt may also be present. Fear may arise if parents are unsure of the diagnosis, the implications of it, and what the future holds. When a parent is given information about a diagnosis, it is common to only take in bits and pieces of that information. Large chunks of a discussion can disappear. You are unsure of what you have heard, or what it means. A medical or developmental professional may use jargon or terminology that is completely unfamiliar to you. You may be overwhelmed and unable to ask questions or clarify the information you do not understand. You may fear the reactions of your family members to this news and you may fear that your child will be rejected by society.

Parents may also feel greatly alienated or separated from others. You believe that no one else is coping with a situation like yours. Guilt is often associated with feelings that you could have done something to prevent this. Parents ask “Why us?” and search for explanations. Much self-reproach and feelings of remorse, or sorrow can stem from questioning the causes of your child’s special needs.

Guilt may also lead to confusion during this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion may reveal itself in sleeplessness, inability to make decisions, and general overload. As with fear, confusion is often related to being forced into a world that is unfamiliar to you. Medical or developmental terms are feeling like a new vocabulary and you find that you cannot make sense of it.

Feeling helpless to change what is happening can occur. You may recognize that you cannot change the nature of the diagnosis and it is very difficult to rely on the judgments and opinions of the professionals with whom you have had contact. You are interacting with people who are basically strangers to you and with whom no bond of trust has yet been established. Helplessness is often accompanied by disappointment. Disappointment related to your expectations being changed can create a roadblock or barrier to acceptance of your child.

Rejection may also be present. Rejection can be directed toward your child, a medical professional, or toward other family members. Rejection and depression are often linked to one another.

Many families reach a stage of adaptation where they can accept their child, the diagnosis, and themselves. At this stage, families begin to find, or pull together resources to adapt to the situation and to help cope with what is to come.

Not all parents go through these stages, but it is important for parents to identify with all of the potentially overwhelming emotions that can arise and know that they are not alone. The impact of a child’s diagnosis affects different families in different ways. Keep in mind that there are many actions that you can take immediately to help you and your child.

After the Diagnosis

  1. Request Information
    Your first visit with the doctor may leave you emotionally drained and just not capable of taking in any more information. Try not to do everything
    in one visit. Set up a second or third visit with the doctor who diagnosed your child.Before you go for the next visit, write down a list of questions you want to ask, or write down questions during the visit.A few questions to consider asking the doctor can include:

    • Does my child need additional testing, blood work, and assessments by other specialists?
    • If so, when will the tests be scheduled and when will we know the results?
    • How do you know my child has__________?
    • Are there other names for my child’s condition?
    • How will this affect my child’s development?
    • What needs to happen next?

    If you do not understand the doctor’s response to your questions, ask him to explain in greater detail. Write down the responses, or bring a tape recorder. Don’t rely on your memory! This is an emotional time for you and you may forget key things the doctor has said. Ask the doctor to give you a list of books on the diagnosis and related support services in your community. Get the information in writing and if you need a referral to another doctor or agency, request that the doctor do it immediately in your presence.

  2. A Second Opinion
    If you have any doubts about the diagnosis or the professional who gave it to you, seek out a second opinion. Do not feel that you have only one option when it comes to having your child assessed. If a medical professional is unable to answer your questions in a manner that you find reasonable and clear, move on. You need to establish a comfort level with a medical professional who may be involved with your child for some years to come. You want to develop a sense of trust with this person and be recognized as a contributing and valued source of information about your child. You are in the best position to observe and report what your child is doing. Be confident that you know your child better than anyone else.
  3. Parent and Family Counselling
    This unique service can assist parents and other family members to help understand the meaning of a child’s diagnosis, and assist them in developing realistic expectations for their child.Counselling sessions also provide an environment in which parents can openly express and work through their feelings. Sessions offer coping self-help skills, group relaxation, self-praise, and self-instruction. Siblings (brothers and sisters) of a child with special needs are often included in counselling sessions. These sessions help siblings work through their feelings and emotions concerning their brother or sister with special needs. It is normal for your other children to feel resentment, fear, embarrassment, and guilt. These problems, if not acknowledged and expressed in appropriate ways, may cause long-term issues.
  4. Talk to Another Parent
    Have your doctor provide you with contact information for parent support services. He should be able to connect you with another parent who has had the same experience as you.Pilot Parents is an example of a parent support group with chapters across Canada and the United States. The program was developed by parents of children with special needs in order to offer support to parents of newly-diagnosed children. You may also be able to locate a support group in your area through organizations dedicated to your child’s particular special needs.
  5. Talk to Your Family and Friends
    When you feel comfortable, share the information about your child’s special needs with your family and friends. You may find that you have a support network already available that you did not expect. Keep them involved and up to date with any important information about your child and family. Family and friends usually want to assist, or help you any way that they can, so let them. For example, you could have them watch your other children when you take your child with special needs to an appointment.
  6. Services
    As stated in the first point, get your doctor to make referrals for services that will provide support to you and your child. Ask for a listing of these resources and get a contact name of a person who can provide you with more information. Feel free to call them on a regular basis to inquire where your child is on their wait list and if there are other services you can access that will benefit your child. Keep a binder at hand to hold information that is sent to you and requested of you. Write down important phone numbers and appointments that your child may have. Get written copies of all documentation from doctors, early interventionists, and therapists regarding your child.Families often represent the only long-term, responsible, and caring people in the life of a child with special needs. The family is very important. Interaction with family members deeply influences the child’s opportunities and barriers, challenges and expectations, ambitions and frustrations, and general quality of life. Whether your family is two-parent, single-parent, or extended, it plays a powerful role in your child’s social, emotional, behavioural, and intellectual development.Getting help is a key step in understanding what your child and family needs during this time. Support from professionals and social services agencies can help you build a relationship with your child, and help you recognize your child’s individuality and unique contributions to the family.

Additional Resources:

Healthy Babies, Healthy Children Toronto – https://www.toronto.ca/community-people/children-parenting/pregnancy-and-parenting/pregnancy/during-pregnancy/prenatal-programs/healthy-babies-healthy-children/
The Healthy Babies, Healthy Children Program (HBHC) is a prevention and early intervention initiative to provide support and services to families with children from before birth up to six years of age. Public health nurses determine what services are needed and make sure the family is linked to the most suitable resources in their community. The family home visitor is an experienced parent who comes to the home to provide support and information to new mothers.

Parent Outreach Program – www.woodgreen.org
The Parent Outreach Program provides free in-home support to parents of children who have been diagnosed with one or more developmental delays. Specially- trained home visitors are all parents who have children with developmental delays. Weekly visits by the home visitor will assist parents with ongoing support and guidance in raising a child with developmental delays, develop programming in the areas of self-help and socialization skills and provide information on additional community resources.

FamilyLink – FamilyLink group on Facebook
FamilyLink is a parent directed support group for parents and caregivers of children with an Intellectual Disability. Each member can pose questions, vet concerns and share through this program. We are here for sharing, support and friendship.
Contact: Sarah Winter swinter@cltoronto.ca 647-968-6214

Books and Literature:

When Your Child has A Disability: The Complete Sourcebook of Daily and Medical Care, Revised Edition
By Mark L. Batshaw

Answers to frequently-asked-questions follow the chapters to clearly address common parent concerns like behaviour, medication, and potential complications. New and expanded chapters have been added to explore the latest care issues including prematurity, early intervention, legal rights, attention-deficit/hyperactivity disorder, learning disabilities, genetic syndromes, and changes in health.

You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities
By Stanley Klein and Kim Schive

The authors have collected stories by parents of children with special needs from all over the world. You Will Dream New Dreams is a remarkable parents’ support group in print. The shared narratives come from those with newly-diagnosed children and adults with special needs. These experiences offer hope and encouragement and serve as a reminder that there are others out there who can help.

Changed by a Child
By Barbara Gill

Parenting is always tough, but parenting a child with disabilities, serious injuries, or chronic illness can be a life-changing, profoundly disrupting experience. In Changed by a Child, Barbara Gill provides brief meditations and passages about the challenges, grief, faith, hope, and other feelings and experiences of parents who have a disabled child. Gill’s son has Down Syndrome, and she writes with the authority and credibility of a parent who has been through it herself.

What is Specialized Equipment?

Seating

There are several types of specialized seating. Wheelchairs and specialized strollers are used when a child’s temporary or permanent physical condition makes walking impossible, when walking is so difficult that it leaves no energy for other activities, or when the child needs to develop the motivation to get around.

photo of specialized seating

There are many types of wheelchair designs: manual and self-propelled chairs can be light-weight or heavy-duty, have one-armed drive, or be lever-operated. Battery driven wheelchairs can be conventional, scooter-type, heavy-duty, or all-terrain.

Stroller/travel chairs are a type of specialized seating in which the child is pushed by another person. These strollers are sturdier than young children’s strollers and offer more head and neck support.

Other Mobility Aids

Mobility devices can provide support for a child to crawl, stand, or walk.

Crawling: Scooter boards can be propelled by the child’s arms as he lies across the board.

Standing: Many children with balance issues are unable to stand independently but can play if they are supported in a standing position. Sometimes children who cannot hold their heads up while lying down are able to hold their heads up when they are in a sitting or standing position.

Walking: A child with weak leg muscles may require braces to help support the joints. Even with bracing, a child may require a walker for trunk balance. Young children usually require walkers with front wheels as they require less energy to use than walkers without wheels.

Rolls and Wedges

Rolls

For children who require support in developing control of the head, shoulders, arms, and hands, a small roll may be used. When placed under the chest, the roll makes lifting the shoulders or raising the head easier. Some children keep their arms close to their body because they don’t have enough control and balance to reach out their arm(s). The roll can also assist children to move their arms forward and reach out.

Wedges

A wedge provides slanted support to help children work on head, shoulder, and arm control. The height of the wedge depends on the child’s needs. Lower wedges allow the child to lift up onto the elbows, while a higher wedge encourages arm and shoulder movement.

References:

Based on Parent Articles for Early Intervention, 1990, Communication Skill Builders, Inc.

What is Bullying?

photo of girls bullying a boy at school

Bullying can occur in any environment and is defined as exposure repeatedly and over time to intentional negative actions on the part of one or more people. It happens, on average, every seven minutes on elementary school playgrounds. It most often occurs while others watch and it does not stop when victims are left to deal with it themselves.

Forms of Bullying:

  • Physical – hitting, kicking, pushing, pinching, shoving, etc.
  • Social – insulting, teasing, threatening, excluding, making fun of others, gossiping, spreading rumours, ganging up on others

Why Children Bully:

There are many reasons why children bully others. Sometimes the bully feels like s/he doesn’t fit in and so they bully others to become popular with a particular crowd. Many bullies engage in bullying behaviour because it makes them feel stronger, smarter, or better than the victim. Bullying can make the bully feel more in control. In some instances, the bully feels that this behaviour is the normal way to interact with others since they have been treated this way themselves.

Warning Signs:

A child may be a victim of bullying if s/he:

  • Has unexplained torn clothing or missing belongings
  • Suddenly complains of headaches, stomach-aches, or nightmares
  • Has difficulty making friends
  • Is often alone
  • Suddenly is more withdrawn and/or aggressive toward self or others
  • Does not want to go to school
  • Is more easily upset than usual
  • Avoids certain situations

A child may be a bully if s/he:

  • Behaves aggressively with people and animals
  • Is easily angered and frustrated when playing cooperative games
  • Believes violence is an acceptable way to solve problems
  • Hangs around with other children who appear to be bullies

What can teachers do if children are…

Victims:

  • Listen to what the child says, believe what they say, try to understand their feelings
  • Assure child that it is not their fault
  • Involve children in prosocial activities with peers that are more supportive
  • Provide specific strategies for child to use next time bullying happens

Bullies:

  • Let the child know by your words and actions that bullying is not okay
  • Teach children to act in ways that show respect for others and themselves
  • Acknowledge what is happening and provide help

Bystanders:

  • Talk to children about bullying and listen to what they think about it
  • Help children plan what they will do if they see someone being bullied
  • Stress the difference between telling and tattling

What Can Centres Do to Promote a Bully-Free Zone:

  • Develop an anti-bullying policy which is shared with families when children are admitted to the centre
  • Provide information and workshops for parents

Resources:

Vision Assessment

photo of a girl getting her vision tested

What is vision assessment?

A vision assessment is an organized procedure for gathering information about the health and function of the vision system. Assessments can be done at home, school, and during regular examinations with the doctor. A child with a known visual impairment should be assessed by a paediatric ophthalmologist, a teacher for the visually impaired and an orientation/mobility specialist. Observations made by caregivers and the above mentioned specialists are a very important piece of the assessment.

Why assess?

  • To understand how the child uses vision to gather information.
  • To share information with family, friends, and other professionals working with the child.
  • To promote development based on the findings of the vision assessment.
  • To determine whether the child will learn more effectively through auditory, print or tactile media.
  • To evaluate the child’s ability to move safely in the environment.
  • To determine whether a child is eligible for services.

What information is needed?

Parents and caregivers observations provide valuable information that helps interpret a child’s use of vision. Family members and caregivers have the greatest opportunity to observe children over time and in a comprehensive way. Research shows that families’ observations of their children have been accurate even when those observations contradict
formal testing results.

The child’s medical history is an important part of the assessment. Medical issues such as seizures, motor impairments, respiratory difficulties and other health issues may affect the child’s functioning and ability to see. Medications have side effects, such as blurred vision, that could affect the final outcome of a vision assessment. Medications may also affect the child’s responsiveness, including visual function.

How to assess?

Many professionals use a variety of tests to assess vision. Vision information from each child will determine the tests and methods used. Before decisions are made about evaluation methods and materials, it is important to establish the following:

  • What the family and others familiar with the child have observed.
  • Materials and activities used in the assessment are developmentally appropriate for the child.
  • Materials and activities are of interest to the child.
  • Whether the child requires extra time to respond.
  • It is important to observe the child in familiar and unfamiliar settings.

The diagnosis of some eye conditions is dependent on the use of additional tests such as:

  • MRI (Magnetic Resonance Imaging) examines soft tissue structures inside the body not seen with X-Rays.
  • CT Scan (Computerized Axial Tomography) creates pictures of cross sections of the body. These images of tissues are produced by passing X-Ray beams at various angles through the area of the body to be studied.
  • Lighting and Illumination: type of light, the intensity and position of the light and the child’s adaptation to light and glare are important considerations. Some children require strong, bright lights and can see better when the light is positioned at specific angles. Others may be sensitive to light.

Questions for the Ophthalmologist

A visit to the ophthalmologist can be busy and overwhelming for everyone. It is helpful for families to have some or all of the following questions ahead of time.

  1. What caused my child’s vision problem?
  2. Is the eye condition hereditary?
  3. Is my child’s condition stable?
  4. Is there any surgery that would help my child’s vision?
  5. Should there be restrictions on my child’s activities?
  6. Will glasses or contact lenses help? If so, how much will they help?
  7. Will low vision aids help when my child is a little older?
  8. What is my child’s best viewing distance?
  9. How does the eye condition affect my child’s mobility?
  10. Are my child’s eyes sensitive to light?
  11. What kind of lighting will help my child?

Glossary

Optometrist: A licensed specialist (O.D.) trained to examine eyes and related structures to determine vision problems. S/he may prescribe eyeglasses, contact lenses, or other vision aids.

Orientation and Mobility Specialist: A teacher trained to teach people who are visually impaired how to move safely around the environment.

Paediatric Ophthalmologist: A medical doctor (M.D.) who specializes in treating children’s diseases of the eye. This doctor may perform surgery or prescribe other types of treatment, including eye glasses and contact lenses.

Resources:

INSITE MANUAL (1988). Ski-Hi Institute, Logan, Utah. Topic 4, p.35.

Coleman, J. (1993). The Early Intervention Dictionary Woodbine House, Bethesda, Maryland

Using the Anti-Bullying Program Kit

About the Program:

This kit is designed to provide classroom teachers with all the activities and material ideas required to implement the sessions in the classroom.

There are six sessions, usually implemented on a weekly basis with the entire group of children. The sessions are structured so that they provide information on a specific topic through a variety of methods.

Each session begins with a song that welcomes each child by name to the group. This is followed by a visual schedule of the activities that will occur and a set of rules.

Puppet scenarios are carried out demonstrating the concept or skill that is being discussed for that week. The scenarios promote discussion regarding the topic and there are visuals to support each main point.

A story describing the topic and desired responses is included. This is followed by a few cooperative games each week. The circle closes with a song that acknowledges each child by name.

Informing Parents:

As a school-age teacher, you may wish to share with the parents the fact that you are implementing an anti-bullying program in your classroom. Please see sample letter to parents.

As a program consultant implementing this program in partnership with a classroom teacher, you will require parental consent. Please see sample consent form.

Session Topics:

Materials Required:

Week One:

  • Two puppets
  • Paper and crayon

Week Two:

  • Two puppets
  • Toy car
  • Hula hoops and music

Week Three:

  • Two puppets
  • Toy

Week Four:

  • Two puppets
  • Paper and crayon
  • Bean bag

Week Five:

  • Two puppets
  • Small book
  • Large spoon, small ball
  • Newspaper

Week Six:

  • Three puppets
  • Newspaper

Using Signs and Gestures

photo of teacher using a sign at circle time

We communicate with others in different ways. We can greet a friend by saying “hello”, by waving our hand, or smiling at them. As a parent, teacher of early childhood professional you can use gestures or signs while speaking. This can help to enhance your child’s receptive language (understanding) by providing her with a visual cue. It also assists adults by slowing down their accompanying speech and emphasizing the key words.

Using Gestures

Gestures are a natural part of communication. When adults exaggerate gestures, the information provided becomes clearer.

Let’s take a look at some examples of gestures you can use throughout the day to help your child understand:

  1. Directions

    • rub your hands together to show it is time to wash hands
    • tap your head to let your child know she needs to put on a hat
    • you can pat the chair or spot on the floor while saying “Sit down.”

  2. Greeting

    • waving hi or bye

  3. Concepts

    • using your fingers to show how many (e.g., give me one cookie)
    • fanning yourself to show that it is hot, or rubbing your arms to show that it is cold

Using Signs

In addition to helping children understand others, signs are often introduced as a support to learning speech or verbal communication. Signing can take the pressure off and actually help children say the words. Signing, along with speech, provides information in three different learning styles: auditory, visual, and kinesthetic (movement and touch). Signing supports children who learn in any of these three ways, in contrast to speech which is only auditory. Children who learn through movement are good candidates for using signs themselves.

A speech-language pathologist should be consulted when considering using signing as a child’s main method of communication.

Some basic signs can be introduced as a general support. Signs to give your child information could include: stop, wait, eat, drink, washroom.

image of basic signs: stop, wait, eat, drink, washroom, help

Your child will be more likely to use signs if the ones chosen serve a specific purpose and are important for your child to learn. For example, if signing “more” gets the child more of something she likes, she will be motivated to learn. “My turn” and “Help” are also useful as they can help your child get something she enjoys or wants.

Communication Posters

This set of thirteen posters is designed to support the use of general communication strategies at home and in the classroom. All children can benefit from the strategies. It is important to place each poster where it will be useful to everyone who plays/speaks with your child.

The following are some suggested areas to display specific posters in your home:

  • Near floor toys (such as blocks):
    “Get on Child’s Level”, “Take Turns”, and “Model”
  • Near table activities (such as puzzles, beads, shape sorters):
    “Imitate”, “Describe”, “Follow”, and “Listen and Respond”
  • On the kitchen table/lunch table:
    “Expand” and “Offer Choices”
  • Near bookshelf /book centre:
    “Use Descriptive Statements”
  • In the washroom and/or a closet:
    “Simplify” and “Wait”

Classroom Specific

  • Near circle area:
    “Use visuals”

The posters are intended to remind adults of ways to promote children’s communication through everyday activities. These reminders help people to use the same strategies until the strategies become familiar. Don’t let the posters overwhelm you. Start by posting the ones that you feel are most important to your child or are part of your child’s individual program plan. Add other posters when you think you are ready to try a few more. Move the posters to another area if you feel that they will be more helpful somewhere else.

Download the Communication Posters.

Get on a Child's level - poster

Imitate - poster

Take Turns - poster

Describe - poster

Listen and Respond - poster

Expand - poster

Use Descriptive Statements - poster

Model - poster

Follow - poster

Simplify - poster

Wait - poster

Use Visuals - poster

Offer Choices - poster

Token Economy System

photo of child holding visual symbol/token

Token systems are part of our everyday lives. One example is how we work for money which has no value until we later use it to buy items or activities that are valuable to us. Just like we are motivated to earn money, children often need something to motivate them. As a parent, teacher of early childhood professional you can use a token economy system to encourage positive behaviour and help your child build skills.

When using a token economy system with your child, he can earn tokens for showing positive or appropriate behaviours, or for completing specific tasks. Once your child has collected a set number of tokens, he turns them in to get an item or activity that he really enjoys. For example, every time Marcus remembers to clean up his toys, he earns a token. After earning 5 tokens he gets to play on the computer for 10 minutes.

How does a Token Economy System help?

A Token Economy System can:

  • Help your child learn to wait for rewards by providing a visual reminder of how much more he needs to accomplish before getting a favourite item or activity.
  • Help your child become more aware of time by showing how long he has been at a task and how much longer he needs to “work”.
  • Help motivate your child to be successful in many tasks because it eventually leads to a greater reward.

How do I use a token system?

Here are a few tips to help you get started.

  1. Selecting the behaviour(s) to be rewarded. Let your child know what behaviours you want to see. Say them in a positive manner (e.g., “Hands in lap” rather than “No hitting”, or “Put toys in the basket” instead of “Don’t leave the toys on the floor”).
  2. Decide how you will measure the behaviours. Some behaviours will be measured by the number of minutes your child shows the desired behaviour (e.g., sitting quietly for 1 minute) or the number of times your child shows appropriate behaviour (e.g., tidying up his toys after playing).
  3. Decide where and when to monitor the behaviours. For example, you might decide to use this token system only at home, in the classroom, during lunch, or at bedtime. You can also use a token system at a time that is convenient for you, or at a challenging time for your child.
  4. Select your tokens. You can use lots of different things as tokens including stickers, coloured dots, pennies, or even checkmarks. You can also use a picture of the targeted behaviour as a reminder of what your child has done to earn a token (see below for an example).Keep in mind that tokens should be portable (easy to carry), and durable. They must be easy to give to your child and convenient to keep. You may wish to put tape or Velcro on the tokens so they can be secured to a token board and used over and over again.
  5. Select your reinforcers or rewards. Whenever possible, get your child to help you choose a reward. You might also set out possible reinforcers (e.g., a video, a favourite storybook, a computer game, a puzzle) and see which ones he selects most often. Remember to use reinforcers that are appropriate for your child’s age and the setting the token economy will be used. Try to add new ones every now and then.
  6. Decide on the value of the reward. How many tokens must your child earn before he receives the reward? Remember that this can change over time. At the beginning, it should be fairly easy to earn the reward and your child may have to earn only 2 tokens. Later, he may need to earn more tokens to receive the same reward.
  7. Start your program. Have the tokens and token board ready to show to your child as you explain the program to him. Use simple language to remind your child of the expectations for earning tokens each time you use it.
  8. Deliver the tokens consistently. Give the tokens to your child as soon as you see the desired behaviour. Remember to praise your child when he receives the token. “Good sitting!” or “Nice washing your hands!” will remind your child why he is getting the token.
  9. Review and adjust your token economy system. Eventually, you will want to fade your child off the token system. Once you notice a significant improvement in your child’s behaviour, you can try to extend the time and amount of work required to earn tokens. Be careful not to do this too quickly or the positive behaviours may stop.

How does a token economy system look?

Token economy systems can be in a variety of forms. If this is your first time developing a token system, you will want to keep things simple. You’ll find some basic templates in the Visuals Engine of Learning Together.

Let’s take a look at an example:

Malcolm gets a sticker on his token board every time he puts his dishes in the sink after eating.
When he has 3 stickers he gets to play on the computer for 20 minutes.

image of a token economy board

NOTE: Some token systems consist of removing or “taking away” tokens for inappropriate behaviour. Taking away tokens can cause your child to lose his trust of the system. Keep in mind that you’ve put a lot of work into creating a token economy system and teaching your child how it works. We recommend that for young preschool children you focus on giving your child tokens for the behaviour you want to see and use other strategies to let your child know that inappropriate behaviour will not result in getting your attention.

Here’s another example:

Ms. Zemenek is trying to encourage Marika to speak quietly when in the library. Every time Marika uses a quiet voice, she earns a token. In this case, the tokens are pictures of ”talking quietly”. After earning tokens, Marika gets to read her favourite book, The Very Hungry Caterpillar.

image of a token economy board

Using a token economy system is an excellent way to promote positive behaviour, self-esteem and have your child work towards something special. It’s also a great way to remind yourself of the goal you and your child are working towards.

Here’s another example:

William is easily distracted. He often starts playing with things but ends up staring off into space or wandering away. His teacher wants him to learn to keep himself involved in purposeful play activities, and finish what he is doing before moving on to another activity.

We’ll establish a goal for William to complete a short series of six activities during free play time. We will reward him with a token every time he completes an activity. Initially, we’ll select activities with clearly defined endings, such as puzzles, building a block tower using 10 blocks, etc.

We’ll start with a token board that only requires a single response before the reward is delivered. As William becomes familiar with the token system, we’ll move to two response, and so on, until he gets to six responses before earning the reward. Each day before free play time, we’ll remind William that he’ll be earning tokens for each completed activity. We’ll show him how many he needs to earn. We’ll also review his choice of reinforcers and help him to select his reward. The picture of the reward will be placed in the end space of the board and will be visible to William throughout free playtime. This will continually remind him of what he’s working towards. In case, William is working to earn a tickle.

Tips for the Classroom:

Token economy systems are great to use in classrooms because they can be geared to a specific child, or to groups of children. The children may be working on improving the same behaviours or have completely different behaviours that will be reinforced. Token systems are most effective at maintaining positive behaviours when they are specifically designed for a child or group of children, address specific targeted behaviours, and are clearly communicated. The expectations and rules must be communicated and understood.

Talking to the Family About Your Concerns Regarding Bullying

photo of parent teacher meeting

Developing a partnership with the family is very important when we share in the care of their child. We communicate with parents on a daily basis. We often talk about their child’s achievements, friends, or the things he particularly enjoys doing. We talk about how the child is settling in, our program, and the philosophy and goals of our service.

But how do we tell the family about the fact that their child is exhibiting bullying behaviour?

Remember that what we see as a problem may not be viewed this way by the family. This has significant implications for how we raise concerns with the family.

Once a concern has been identified, it is important to consider the needs of the children involved.

Understanding the family’s reluctance to hear the message

A family can react quite differently than expected to information about their child.

  • You may have observed the bullying behaviour for some time, while it may be the first time the family has considered these concerns. Some parents may not find the behaviours you consider to be bullying as unacceptable. This may be due to their personality, parenting style, or cultural background.
  • A family may also go into “threat” mode when approached about their child. The parents may see it as a criticism of their parenting skills.
  • You may need to remind parents of your anti-bullying policy (if your centre has one in place). Give general examples of bullying behaviours and the resulting consequences before describing specific incidents in which their child was involved.
  • Always maintain confidentiality when discussing specific incidents (i.e., do not disclose victim names).

Understanding your own reluctance to deliver the message

Why is it difficult to move from discussing what the child ate and with whom they played, to raising your concerns about bullying? Here are some possible reasons:

  • You and your colleagues can feel threatened, too.
  • You may not feel comfortable about the information you are reporting.
  • You may not have established a good rapport with the family before you need to raise concerns.

Raising concerns

Before you raise concerns with the family, consider the following suggestions:

  • Document any incidents of bullying.
  • Talk to your colleagues about your concerns. You need to discuss the issues with your supervisor.
  • Based on your centre’s anti-bullying policy (if you have one), determine who would be the appropriate person to talk with the family – perhaps the supervisor and yourself, or another team member.
  • Talk to the family as soon as possible. If there are two parents/guardians, try to see them together by booking a meeting time that is convenient for both of them.
  • Discuss your concerns with the family without the child being present.
  • Timing is important. Allow adequate time for the meeting and provide a location that ensures privacy.

When meeting with a family, consider the following suggestions:

  • Give the family examples of the child’s strengths and remember the importance of a positive approach when talking to a family.
  • Plan ahead and think about what you are going to say. You may even wish to write it down before meeting with the family.
  • Be prepared. Have concrete examples of your concerns and make sure that they are objective.
  • Develop an action plan with the family about what to do next. Have some ideas ready to suggest to the family about what you will do in the classroom.
  • Be prepared to consider what the family suggests, even if it is quite different from what you had in mind.
  • Reassure the family that staff members are happy to work with them to achieve the best outcome for their child.

Though breaking the news can be difficult, it is important that the issue of bullying be raised as soon as possible.

Respite Services

What is respite care?

Respite care is a family support service that provides temporary relief from the daily challenges involved in caring for a family member with an intellectual and/or physical disability.

The benefits of respite care are numerous, but not always obvious. This service allows parents and primary caregivers time for themselves and can support and strengthen their ability to take care of their child. It can provide a break in the daily routine to help parents avoid burnout, stress and fatigue.

Respite care also gives the child a change in her daily routine. It can provide the child with opportunities to build new relationships, move toward independence, participate in community activities, and make new friends.

Respite options:

Respite is provided in many ways depending on the source (agency or individual), the needs of your family and available funds. Some respite programs send a caregiver to the family’s home, while others require that the child come to a respite group home. At the same time, many parents choose to hire an individual to provide in-home respite care for their child.

Respiteservices.com coordinates a network of agencies and organizations in Ontario, providing respite services to individuals with various disabilities, and their families. A respite access facilitator is available to help families identify their needs and locate the appropriate respite options.

Respiteservices.com’s objectives and main functions are:

  • to develop and maintain a consistent process for your family to access respite care
  • to facilitate creative respite options that meet each of your child’s individual needs
  • to maximize efficient and effective use of respite resources
  • to provide ease of access of information about respite services to families and to increase their options for respite care
  • to identify gaps in service and help with community service planning

The CHAP (Community Helpers for Active Participation) Program is an integral part of Respiteservices.com and helps connect individuals with disabilities and CHAP workers. This is done through a Worker Database where the CHAP Program recruits workers interested in supporting persons with intellectual disabilities, including autism and/or a physical disability, to provide meaningful respite opportunities in the home or in the community. Families are able to access workers after joining the Family Registry.

Visit the Respiteservices.com website for more information about respite services in your community – www.respiteservices.com.

How do I pay for this service?

Parents can apply for provincial funding by completing an application for the following services:

Assistance for Children with Severe Disabilities (ACSD)

This funding provides financial assistance to parents to help with the extraordinary costs related to the child’s disability. It is a direct funding program based on the family’s total gross income. This program is for children under the age of eighteen (18) living at home with their family or caregivers. Caregivers can apply by filling out an application with or without the assistance of an agency or professional.

Special Services at Home (SSAH)

This funding is designed to assist families caring for a member who has a developmental and/or physical disability. The program focuses on providing funding to assist families to purchase supports not available elsewhere in the community. 

Families who receive funding have the option of hiring a worker who can spend time with the child at home and/or assist the child learning new skills. 

Respite Care During COVID-19

As part of the SSAH program, families may use their funding to hire family members, neighbours or friends to provide respite services. This allows families who cannot hire respite workers or have concerns about having workers in their homes, to hire trusted family or friends to provide respite.

Individuals are not eligible to be hired through SSAH funding if they are a primary caregiver or under the age of 18.

Families who receive SSAH funding can submit respite expenses for reimbursement through mail, email, fax or through MyDirectPlan.com, a free direct funding management tool.

A Parent’s Experience With Respite Care

My name is Suzanne and I have two sons with special needs. My son Mekhi was diagnosed with PDD at 3½ years old and Malin a Communication Disorder at 2.

Being a fulltime working mom is a job in itself, when you have children with special needs, it takes every ounce of energy and any spare time that you have.

During the devastating time of their diagnosis, I was dealing with communication issues, temper tantrums and self-injurious behaviours. I felt so alone and isolated in my home. My husband worked days and I worked nights. We couldn’t trust anyone with our children, because they couldn’t communicate their needs and wants.

Finally through a friend I was told about a drop-in program for children with special needs that are integrated with “normal” children.

I enrolled them Monday to Friday from 9:00 to 11:15 am. This was the best thing I could have ever done. It gave me a much needed break from my kids each day. I actually had time for me (I loved it) and when I would pick them up, I was so happy to see them. I felt so refreshed and ready to tackle anything.

The children also loved it; they got to interact with other children, do arts and crafts, sing songs and make friends.

I really recommend Respite Care; it really changed my life and gave me a better perspective on things. All parents at times need a break from their children. This is exactly what I needed. It made me be a better parent.

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