It’s okay to have Down syndrome

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

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