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Meet a young woman with RTS

Malai - Team Player, Vibrant Athlete

“Malai is friendly and outgoing,” is the first thing her mother, Molly says about Malai. “She has always been eager to learn and interact with others.” Those who get the chance to interact with her have loved Malai, mostly because of her happy disposition. “We have really been blessed because of her great personality.” As a child Malai was always happy. Molly reminisces that Malai never wanted to be the center of attention, but would always stay engaged with the people around her. As an adult, she has a good life in her community and has lots of friends. Molly mentions that everyone knows her everywhere they go.

Malai has always loved sports. When she was younger, she played on the same recreational soccer team as her younger brother, Mark, and their dad was the coach. Malai would play defense, and Mark would get frustrated with her because she would stand in the back and wave to people in the crowd! When she got older, she became involved in Special Olympics, where she has many friends. “When we get there, she always says hello to everyone!” remarks Molly. She has also been taking therapeutic horseback riding lessons for about 25 years, which is also a favorite sport with her brother, sister, and mother. Malai enjoys taking care of animals, including her dogs, and her mini horse named Ginger.

Malai is now 35 years old, but Molly remembers the journey through the school systems well. When Malai was about 1 year old, her parents began to question her development. They received a developmental assessment, and it was confirmed that she had delays, but they did not receive the diagnosis of Rubinstein-Taybi syndrome until later. She began to receive services while living in West Virginia, and was eventually referred to a Head Start program for 3-4 years year olds. She attended Head Start in the morning and went to therapies in the afternoon.

When Malai was 5 years old, the family moved to Massachusetts. Her parents had to bring her to a special classroom, in a special school, in a different town. They lived in Massachusetts for 9 years and then moved to Vermont. There, Malai was included in a regular classroom and was accompanied by an aid. Molly felt the school team was incredible about integrating her into everything as much as possible. They worked with her strengths and accommodated her needs. Materials were modified for Malai so she could access the curriculum. Her teachers loved working with her because she had a positive disposition and was willing to try new things. They helped her to express herself, which helped Malai to stay comfortable in the classroom. The family’s stress was reduced after moving to this school and being part of a supportive team.

At school, Malai received OT and PT services for a time, but most of her services were focused on speech therapy. Malai did not start really talking until about 5 years old. Before that she learned to use sign language, but was always very motivated to talk. Malai would receive speech services to help her express herself, and to help her pronounce her words more clearly. Today Malai is completely verbal, but is still difficult to understand at times. Reminders to “slow down” while she’s talking really seem to help.

Molly notes that Malai has been lucky in terms of health. She wore glasses when she was young, but was then told she did not need them anymore. Her teeth are crowded, but have never been a problem. The family and school worked hard together to monitor her food intake and make sure she did not become overweight, something that happens often with RTS.

Malai’s school team helped transitions to go smoothly. The team anticipated some anxiety with the transition into high school. So, while Malai was in the extended school year over the summer, they had her visit the high school frequently. Becoming familiar with the school helped her to transition more easily for the school year. Molly does admit, being a professional in the field of public health and health care, she was aware of how the transition period should work and she sought out the help she needed.

Another support that proved valuable through the transition period was a curriculum the family and her school team got involved with through the University of Vermont. This curriculum is called Choosing Options and Accommodations for Children (COACH). This involved people in her life, a circle of friends, family, and educators, getting together with Malai to talk about what she sees for her future and then making a plan to get there. This started in eighth grade for Malai and her family. Molly feels this person-centered planning approach was a very positive part of planning for her whole life (read an article about it here, scroll down to page 9). 

Malai also tried many jobs through the vocational services at her high school. The last job she held in high school was working at Barnes and Noble. She enjoyed being there so much that she has stayed as a part time employee there ever since. She has now been working at the same Barnes and Noble for 16 years with a job coach. She loves going in to work, and loves her co-workers, and they all love her. Malai lives at home with her parents and receives 40 hours per week of supports. She would like to live somewhere else on her own, and the family’s next adventure will be figuring out how to make that happen.

Advice for Parents:

  • Meet regularly with the school team and ensure good communication.
  • Find out what you can do at home to further support the services your child is receiving (i.e. speech, behavioral).
  • Engage in team sports and any type of physical activities available to encourage self-esteem, more peer supports and friendships.
  • Molly read the story, “Welcome to Holland” early on, which she said helped shape her views of being a parent of a child with disabilities. She recommends this poem to all parents.

Advice for Teachers:

  • Communication and working on a team with the family is very important.
  • Help families to know what resources and social supports are available to them.
  • Ask families how you can help them- sometimes they just don’t know how to deal with problems that arise!