It’s okay to have Down syndrome

by PR Admin | January 20, 2013 2:34 pm

By: Louise Schutte

The PREP Program, founded in 1988 by speech therapist, Barbara Tien, is a resource centre dedicated to the inclusion of individuals with Down syndrome in home, school and community life.

The PREP 1 – Early Learning program can help prepare the child to enter a group setting with typical developing children. “What is key in Early Learning,” Tien states, “is for Moms to come together and learn from each other’s experience.” This teaches them that their child has the right to be included in all community activities and they have a responsibility to advocate for their child’s inclusion. “They are so used to noticing the differences,” Tien explains, “Early Learning helps a parent to see that their child is more similar (especially at a young age) than different from his or her peers.

What parents are learning is that inclusion starts in the early years. Attending our program helps them assume their child belongs and to not apologize for their presence. Thankfully most of our parents have a wonderful experience, as so many community members are now champions for those with special needs.

One of our parents was very nervous about starting her child in a music program. She was worried about what the other parents would think and whether the teacher would like her child. She knew her child would enjoy it! She was lying awake at times imagining every worst scenario possible. We encouraged her to stay calm and carry on – she and her son love the classes. The other parents have not commented other than to say how cute and able her son is, and the teacher has been totally on board.

With the support of Early Learning she is now considering even more community activities for her son. The first time is the toughest and now that she knows her son belongs, the next experience will be easier.”

Down Syndrome is a chromosomal irregularity whereby there is extra genetic material associated with chromosome 21 – resulting in an extra copy of this chromosome. The presence of this extra copy alters the body’s and brain’s normal development generally resulting in mild to moderate intellectual disability and poor muscle tone.

The PREP 2 – Early Childhood ECS Program is a preschool class that offers families all the “extras” needed to prepare their child for school. PREP is known for its excellent speech therapy and kids learn to speak up with confidence at PREP. Parents also benefit from advice from the occupational and physio therapists. OT focuses on giving parents guidance on how to help their child achieve independence in daily living activities like dressing, toileting and eating. PT gives parents input on building strength, balance and coordination in play activities.

Parents in this program are required to volunteer and to learn by doing. This parental involvement is “ALL-important” to the child’s continued development. “Parents are a child’s best teacher and most important advocate. Standing back and letting the professionals work with your child does not build capacity at home,” Tien points out. “The coaching model works for kids and parents too!”

Karen Mueller’s son, Dean, has been involved with PREP since he was 14 month old. “I was familiar with PREP in my professional role as a social worker and then I became a parent,” Mueller says.

After Mueller had Dean, the Alberta Children’s Hospital Down Sydrome Clinic contacted her and sent someone to the Mueller home with an information package of resources specifically serving children with Down syndrome, including PREP.

Dean Mueller has now graduated from the ECS program and is in his local Catholic school for Kindergarten. “The ECS program benefited not only Dean but our entire family,” Mueller says. “Their staff have an incredible knowledge base of the challenges our children face and of how we can best support them. They regularly worked with Dean (directly with him and with us to develop our skills) in the PREP classroom as well as his community preschool to encourage all aspects of his development from speech, to pencil grip, to developing friendships and to riding a bike. They provided opportunities for Dean to practice his skill development that has transferred over into his kindergarten class such as waiting in line, coloring, participating in circle, and developing friendships.”

“In Early Learning the children do learn to sit and wait their turn, share toys, and enjoy snack time together,” Tien concurs. “In fact most of our little ones do very well in community settings because they are “prepped” for success.”

The team of people that worked directly with Dean in both classrooms included occupational therapists, speech therapists, and physical therapists, classroom support staff and teachers.

“The aides that PREP provided were insightful, knowledgeable and proactive in supporting him,” Mueller declares. “A really good example of this is when he began in our community preschool, Dean really struggled due to the high volume of kids and to the complicating factor of his having ADHD in addition to having Down syndrome. His aide realized that this particular setting was not a good fit for him and advocated for him. PREP identified additional community preschools that may be a better fit while still being completely inclusive.

Dean did change preschools and had a very successful couple of years in preschool. PREP, the ECS program in particular, was a group of people who were genuinely committed to him being the best he can be, to his development, and to his success in every way. The program did not just support Dean, they supported us – his parents and siblings. They know that kids come with families who struggle with the normal stuff every family does as well as being on a journey that may not have been what they envisioned when they had children. They created an atmosphere and opportunities for us (as the adults in Dean’s life) to connect with each other, to learn from each other and to discuss topics that are particularly challenging in our lives.

I can say the incredible group of families that we were connected to in our initial contact with PREP is a source of support and I am honoured to have a relationship with them that without PREP we would not
have. In addition to the families of children Dean’s age, PREP has families and children who we also have opportunities to attend Chat nights with which has been invaluable – they are walking a similar road on this adventure we are all on. In addition, the PREP program/staff have been that shoulder to lean on, the voice of hope, and the encouragement we needed.”

Other programs include PREP 3 – Elementary and PREP 4 – Jr./Sr. High. “PREP is a Student Health Partnership provider,” Tien explains. “We are contracted by school boards to provide speech-language therapy to students with Down syndrome. Families bring their child to PREP and the students (depending on need) receive weekly individual, small group, or large group therapy that focuses on helping each student to speak up clearly with confidence. The SLP’s visit the student’s school and the teaching team is welcome to observe sessions at PREP.

PREP also offers the Mavericks Every Child a Reader program for students in PREP 3. We believe that reading is a “life skill” that gives students literacy and independence skills. Every child in PREP 3 is eligible for 10 or more weeks of individual reading instruction at no charge to the families. Thanks and a big YAHOO to the Mavericks Chuckwagon team for their sponsorship of the reading program.”

Mueller relates that the PREP 3 program continues to help Dean in his speech and language development in the provision of direct speech therapy. “His overall development, speech, and pre-literacy skills continue to be supported by PREP in their consultation to his Kindergarten class and the provision of a Developmental Aide. They know that Dean can rise to what we challenge him with and that Dean has amazing skills and potential.”

PREP’s Family Support program is funded by FSCD. Each family registered at PREP is assigned a Family Support Liaison who can connect them to community and other services. Families enjoy a wide variety of workshops and there is even an annual Mother’s Day Retreat.

“More than anything we want all families who have a child with Down syndrome in Calgary and area to be aware of PREP and to know they are welcome to join our community,” Tien states. “Families love to help each other and there is a wealth of knowledge and expertise available to support families in their parenting journey.”

Source:  This article originally published in Spring 2012 issue of “Resource Magazine”. Select this link to download the PDF version[1]

  1. Select this link to download the PDF version:

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Thank you for your donations!

by PR Admin | January 19, 2013 8:14 am

Noah’s donation

We are so proud of Noah and all his pals for raising $272 in donations for the PREP Program!

Noah’s buddies gave him gifts of cash instead of birthday presents and he took half the money and bought a really cool race track and decided to choose PREP as his charity of choice for the other half of the cash.

He would like to challenge all siblings and students of PREP to “Party for PREP” this year and meet or raise his donation! As PREP will be celebrating their 25th Anniversary in 2013 it only seems fitting…so let the celebrations begin!

Barnes family donation

Barnes family donation of $100.00 to PREP. They collected money all year in their “bad deeds” jar and then donated to PREP.

Thank you!


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The Pluses of Peer Tutoring

by PR Admin | September 6, 2011 1:32 pm

What a gift you give to all students when ample opportunities for peer tutoring are provided in your classroom.

Peer tutoring starts in ECS with sharing the news of the day, moves to buddy reading in early grades, and culminates in science fair or other team projects in higher grades.

When students learn to listen to and learn from their peers the many benefits include:

Whether a student is the “tutor” or the “learner” one major impact is improved self esteem. Peers can be more powerful teachers than adults simply because they are non-threatening and less judgmental. Simply put, learning can be more fun! Students are on a equal footing unlike in student-teacher relationships, where the student is always subordinate to the teacher. Within the peer tutoring session students are more relaxed, open to ask questions or ask for help, and eager to start their work. Remember to have your students switch roles regularly, so that each knows how to give and receive.

There are specific purposes for introducing peer tutoring centres in your classroom:

  1. to encourage shy or unmotivated students to interact with classmates
  2. to mentor students with special needs (e.g., ESL, Down syndrome)
  3. to teach students with special needs “learning” behaviours (e.g., eye contact, sitting, taking notes, silent reading)
  4. to create a community of learners where classmates are accepting of differences
  5. to create more opportunities for individual attention

At each grade level students benefit and you will see results in improved cooperation and communication. You, as the classroom teacher, will learn so much about each of your student’s personalities, character, and learning needs.

Only so much can be accomplished with large group direct instruction. Applied learning happens when peers have the opportunity to practice math, reading, and social skills in small groupings. Peer tutoring centres support and supplement traditional large group instruction or individual direct teaching.

At their desks students do math drills with the teacher on the board. They then complete a work sheet as the teacher circulates marking their sheets. Upon completion of the worksheet, students hand it in and pair up to play a card game on the carpet.

Math manipulatives, computer centres and quality educational games lend themselves well to the creation of peer tutoring opportunities in your classroom. Educational games motivate reluctant learners to practice reading and math skills and are a powerful tool to help immature students connect socially. Among their peers, students are more apt to take risks and persevere with problem solving because it is easier to ask a peer for help and there is more tolerance of mistakes.

One of the simplest and most powerful motivators for students struggling with reading is to have a peer buddy to read with. Peer buddies report that they enjoy helping their fellow student. It is an important responsibility that they take seriously and exude pride in doing.

Each teacher has their own system of grouping kids. Whether it be assigned or pick a partner or random draw the goal should always be regular “change ups”, so students aren’t always in the same grouping. Students need adult support and help in situations where they don’t feel comfortable with differences in attitude, ability level, or personality.

Peer tutoring embodies good citizenship in a classroom community. Students will generalize the skills learned to helping a sibling or volunteering for a leadership role in their scout or guide group.

Many students first realize the gifts they have received from their peer tutoring experiences in elementary school when they start to volunteer in junior high or high school.

Rest assured, the gift does go on giving.

How Can Parents Support Peer Tutoring In Their Child’s Classroom

  1. Have your child “buddy read” to a younger sibling or relative
  2. Ask older siblings to be the homework coach at least one night a week, so your child learns to work appropriately with peers
  3. Ask the teacher to include your child in group projects
  4. Practice songs or instrumental pieces your child is working on at school regularly at home
  5. Invite classmates over after school or on a Saturday – create a social network outside of class time
  6. Consider Scouts or Guides as they provide a venue for structured peer learning outside of school
  7. Expect your child to behave appropriately with siblings – sharing and turn taking begin at home

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Turning Words Into Social Action

by PR Admin | September 6, 2011 1:32 pm

Lots of students can rehearse, role play and regurgitate social rules BUT when they are in a social setting with peers, they freeze or suffer from a high “forget” rate. In the debrief after the event, they once again can tell you everything they should have or could have done BUT they can’t tell you why they didn’t remember what to say or do.

Whether you are a teacher, EA, parent or concerned friend, here are a few tips to help students learn to walk the talk and be a hit with their peers at home, school or community activities.

Be a Look Out

In hindsight it is often easy to identify the triggers that set off some inappropriate behaviour in your student. Social settings are unpredictable and you can’t plan ahead for every contingency. However, know your student and his or her tolerance for crowds, loud noises, or performing in public. You can set them up for success by ensuring there is appropriate supervision or a planned “escape” route if noise or crowd levels are intolerable.

Signal System

Use sign language or simple gestures to your student’s advantage! A simple signal system can alert your student that he is perseverating on an uncomfortable topic or standing too close to someone. It can help him move through the halls without pushing or wait with his hand up to be called on. Universal signals include – sh – be quiet, finger to ear – listen, moving hand in a circle – hurry up, thumbs up – keep doing what you are doing and hand up – wait. Visuals are a discrete, natural method to help your student learn while doing.

Fresh Start

Your student may be “branded” as a troublemaker or the shy mouse in a particular group of peers. Involving him or her in a new activity gives the student a fresh start where people don’t have pre-conceived ideas as to social competence. Too often we return to familiar activities when what is needed is a fresh start with new people. Students also tend to rise to new occasions because new is different and different engages their interest.

Practice, then Practice Some More

Many awkward moments are caused when students have a basic lack of social information. We can’t expect students to remember how to act or what to say if they don’t have lots of practice opportunities. Look at the student’s daily schedule or weekly timetable and yes, schedule in social skills “practice”. Some of the best opportunities are when students are given jobs and responsibilities that require them to work cooperatively with a sibling at home or another student at school.

Privacy Please

Too often students are signaled out in front of peers for inappropriate behaviour. A verbal tongue lashing is inappropriate, as it can provide negative reinforcement of inappropriate behaviour. It is far more preferable just to ask the student for silence or to sit down. The lecture can wait until you have a moment to ask the student to step out of the room with you or until you have a chance to keep him after class to debrief.

Talk to the Supervisor

If your student is joining a group with another instructor, take the time to let the instructor know about your student’s strengths and weaknesses. Simple tips as to where the student should sit or who is a good role model or what to do if the student does not listen; all will enhance the experience for your student and put the instructor at ease. Stay and observe the first class or two to make sure your student (and the instructor) gets off to a good start. Do not send students with special needs into a new group without letting the leader know! After all first impressions are important and a little bit of knowledge goes a long way in giving others the helping hand they need to welcome your student.

Allow Your Student to Pick His Own Friends

Do not discourage students from establishing relationships with students who are a year or two younger. Allow peer relationships to unfold naturally, as your student may find more interests in common with younger students on the playground or in a club. Developmentally their abilities or interests are more in sync and students are treated more like an equal. Making the “friend” connection is very beneficial, as students learn so much from peer models. As adults we enjoy a wide range of friends of different ages, it is okay for kids too!

Smaller Can be Best

Some students simply freeze or shut down in large groups. Do not force your student to participate if he or she shows signs of anxiety or discomfort. Start off with a smaller grouping where he is comfortable speaking up or where she wants to go independently. The more your student clings to you, the less he will learn socially!

Find the Fun, Drop the Competition

Non-competitive social or recreational activities are hard to find, especially in the teen years. Competitive activities of any type are stress inducing and many students with learning difficulties cannot cope with the agony of defeat. Often peers don’t want these students on their teams because of the focus on winning. Your student may still be able to compete in individual sports such as swimming, but not cope well in team sports. Find the balance and you will find the fun.

Believe Me, It Happened

Students sometimes try and share a tough social experience with others and are told to be “tough” or “just ignore them”. When we send students with special needs into social settings, we want to be careful to keep the lines of communication wide open. Thank your student for sharing experience, good or bad, with you and ask him if he wants to problem solve. If not, be there to comfort or reassure him. Help you student tell the adult in charge what happened so they can respond appropriately if it happens again. Role playing can be a very effective strategy to build your student’s confidence, so he or she is not a victim of bullies.

It Does All Start At Home

Parents sometimes seem to think that someone else can teach their child social skills somewhere else. Siblings play a huge role in helping students with special needs learn to behave appropriately. You do your student a great service by helping his parents to understand that social skills are taught first at home and cannot be worked on in isolation elsewhere. Share concerns and set goals with parents, so the student is not confused by inconsistency. Ask parents to commit to their child’s success, by following through with social skills practice at home.

Positive Reinforcement Please

Skill building takes energy, work and commitment. Social skills are no different from any other learned skill. Practice is the key to your student’s success. Students with special needs require more practice and support from those who will cheer them on. The power of positive reinforcement will result in a capable student who is courteous to others and kind to self.

We see many examples of confident students, who regardless of ability level, truly are a good friend to others in their life. These students know how to greet others, wait their turn patiently, and help others cooperatively. They are well liked members of their community because they are nice to people. Practice did indeed pay off.

by Barbara Tien
Executive Director
The PREP Program

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Teaching Kids How to Act In Public

by PR Admin | September 6, 2011 1:31 pm

Breaches of etiquette can be a tough (and uncomfortable for some) subject to broach with a student or parent. However, these all important learned skills in the areas of dress, personal hygiene, appearance, and conduct are essential, if students are to present well to others in social settings. From appearance to conduct there are age appropriate social norms for children, youth and young adults. Abiding by these norms may be conforming but one positive outcome of conformity is acceptance. To not master basic etiquette skills is to risk the very real possibility of rejection or ostracism in social settings.

All too often children with special needs are excused from acting appropriately because of their disability or delays. No excuses are needed when a child is developmentally mature enough and socially aware of the need for self care and the importance of conducting themselves appropriately around others.

The teaching should start in the preschool years, as habits are tough to break, but students at any age can increase their awareness of social norms, especially with respect to private vs public behavior. Some students may always need reminders or assistance from adults in their life but they too can develop an appreciation of why it is important to look your best and act your best in public. After all, if you look good, you feel good.

Social norms are learned and children with special needs benefit from the same teaching typical peers receive about etiquette. A disservice is done when students, just because of their disability, are allowed to be the exception to the rules at home or in the classroom. As children enter the higher grades, a lack of teaching becomes more and more evident as they increasingly stand out from peers. A student’s lack of awareness of personal hygiene and etiquette can become a huge barrier to acceptance at school and in the community. The problem can be largely avoided, if the proper teaching occurs at home and is reinforced at school.

It is okay for educators to discuss concerns with parents because they may not notice what has become commonplace at home. Parents in particular need to know when certain habits (e.g., thumb sucking, hands in pants, hugging) are drawing negative attention such as teasing or causing other students to shy away from the child. Most parents will thank you for your concern and caring for their child. After all you wouldn’t have brought it up for any other reason. The talk with parents may lead to proactive problem solving and goal setting that will result in new student learning at home and school.

Even older students who have not yet developed self awareness can learn self care rituals that are imbedded in daily routines. They become comfortable with the routines and with those helping them because good hygiene makes them feel good. It is important for those assisting students to respect the privacy of the individual and to not do things in public that are better taken care of in private (e.g., excuse the student and E.A. to go to the bathroom to adjust clothing or assist with face washing). A good rule to follow is treat the student with the same respect and dignity you would expect others to treat your own child.

The most important area of teaching is around personal boundaries. By junior high students must learn about respecting others personal space and not touching others inappropriately or without permission. Teaching your student these rules also encourages them to speak up and say “NO”. If students don’t know the rules, they don’t know what is wrong. When people hug them without permission, they learn to hug others without asking first for permission. Due to lack of teaching many students with special needs are at high risk for sexual offences. Inappropriate hugging or touching can get them into serious trouble at school. The need for teaching is ongoing in school because well meaning adults often model that hugging students with special needs is the “nice” thing to do. It is a tough topic to broach with people who obviously care about children but the lesson to be taught is that students with special needs are “safer” when boundaries are learned by everyone. It is a conversation that must be had in order to safeguard students from others who would take advantage of their disability.

Teachers can only do so much in the busy classroom. The onus is on parents to teach their child skills at home. A ongoing conversation between home and school opens lines of communication that will result in the student learning independence skills appropriate for his or her developmental level. If a student is not able to be independent the conversation needs to include a discussion of the supports in the classroom that will be needed to maintain his dignity (e.g., assistance with toileting, wiping nose). There are many excellent resources in the library to guide your team in brainstorming ideas.

It is highly recommended that parents and teachers have a frank conversation in June before the summer holidays. Parents then have two months to work on important etiquette and self care skills at home. Remember, parents may not be aware that there is a problem at school and will appreciate a “heads up” that could save their child from ridicule or embarrassment.

The Basics

Let the 5 Wh questions guide you in teaching students the how to’s of:

Sensory Issues At Play

There are some students who, despite repeated teaching and stern consequences, cannot resist the urge to chew on their hands or hair or place their hands inappropriately. The issue can easily become one of hygiene.

These students may have sensory needs that require monitoring or further assessment by an occupational therapist.

Setting Personal Boundaries

The biggest disservice to a student with special needs is when others treat him or her as a small child because of stature or lack of language. There is indeed a “hug confusion” created when children, who have been taught to hug for years, are suddenly asked to stop because now their peers are uncomfortable.

Step 1 – Set the expectations in your class, teach respectful boundaries.

Step 2 – Role play appropriate interactions and students will follow your lead:

Use a simple choice making model to help students understand that, “When you choose to ___________, then __________. ” Obviously the “then” has to be a meaningful consequence – positive for positive behavior (e.g., you chose to greet everyone with a high 5 today, then you get to be first to share news) and losing a privilege for inappropriate behavior (e.g., you chose to hug E. without permission then you have to move your chair away from her).

Children learn what they are taught and in our fast paced society teaching social manners and etiquette is often overlooked. Give your student an advantage by teaching him the importance of self care, appropriate conduct, and good manners in social settings

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