SingaporeMotherhood | Parenting
What Happens if My Down Syndrome Kid Grows Up Without Appropriate Treatments and Therapies?
As we observe World Down Syndrome Day 2019, we learn more about treatments and therapies for babies and children with Down syndrome in Singapore.
A genetic condition due to the presence of an extra chromosome 21, Down syndrome (DS) usually causes varying degrees of intellectual and physical disabilities. Aside from various medical conditions, DS children face developmental delays and learning difficulties. But with adequate treatments and therapies, and plenty of love and support, some can even attend mainstream primary schools! Many also grow up to become valued members of society and live fulfilling and highly functioning lives as adults.
Medical Conditions and Treatments for Babies and Children with Down Syndrome
We speak to Dr Bhavani Sriram, paediatrician and co-founder of Minds Developmental Disabilities Medical Clinic, about what to expect. She shares that DS babies and children often have congenital heart defects, thyroid abnormalities, gastrointestinal problems, and hearing and vision concerns. The treatment plan typically starts at the time of birth with a dedicated team of doctors and allied health specialists.
Referral to early intervention therapy should commence soon after birth. If there are healthcare concerns and the baby needs to be monitored, the doctor will discuss with the family on the appropriate time to commence therapy once the medical issues are settled.
– Dr Bhavani Sriram, Minds Developmental Disabilities Medical Clinic
The medical team will consist of a primary care physician who will follow your child from birth to adolescence, and help in the transition process. Other sub-specialists will address the various needs of the child as necessary. The allied health team focuses on the early intervention and also provides a holistic support to the family.
It is important for families to understand that there are standard clinical guidelines to help identify potential concerns in children with Down syndrome, emphasises Dr Bhavani.
Early Intervention Programme and Therapies for Babies and Children with Down Syndrome
The Early Intervention Programme for DS children refers to a range of programs and resources provided by dedicated professionals. Its aim is to provide lifelong support for babies and children with Down syndrome, and their families. This systematic programme consists of therapies, exercises and activities to improve developmental delays and help DS children achieve their milestones.
Comparing developmental milestones. Credit: National Down Syndrome Society
It’s important to commence the Early Intervention Programme as early as possible for several reasons. For one thing, there are some critical periods of learning that may be the most important years for learning. Also, the first patterns of learning and behaviour may influence development in the later years. And it will also give parents a structured way of implementing the programme at home early on.
Physical Therapy or Physiotherapy
According to Dr Bhavani, babies with Down syndrome often experience low muscle tone (hypertonia) and looseness of ligaments, leading to increased flexibility of joints. The goal of therapy is to facilitate the development of optimal movement, rather than to accelerate development. Physiotherapists will design structured individual programmes for each child depending on their potential.
Ellyssa, who has Down syndrome, when she was just a month old
Judith Knight, founder of WINGS Therapy and Learning Center (WINGS), explains that physical therapy includes activities and exercises that help build motor skills, increase muscle strength, and improve posture and balance. Physical therapy is especially important early in a child’s life, because physical abilities lay the foundation for other skills.
The ability to turn over, crawl, and reach helps infants learn about the world around them and how to interact with it. A physiotherapist also can help a child with Down syndrome compensate for physical challenges in ways that avoid long-term problems. For example, a physical therapist might help a child establish an efficient walking pattern, rather than one that might lead to foot pain.
Good posture and walking patterns pave the way to healthy walking. This will help prevent secondary changes in the bone and joints, which can lead to complications later in life, adds Dr Bhavani.
Speech and Language Therapy
This is one of the most important therapies for children with Down syndrome, says Dr Bhavani. Children with Down syndrome learn to speak later than their peers and have difficulty in expressing language. In the initial stages, some babies with Down syndrome have difficulty in sucking and swallowing, leading to incoordination while feeding. Thus speech and language therapy may also double up as feeding therapy.
Five-year-old Amos, who has Down syndrome, and his family
According to Judith, this offers a two-fold benefit. Speech-language therapists also may help infants breastfeed because breastfeeding can strengthen muscles that are used for speech. Speech and language therapy also helps them develop the early skills necessary for communication, such as imitating sounds. In many cases, children with Down syndrome understand language and want to communicate before they can speak. Speech-language therapists can help children use alternate means of communication, such as sign language and pictures, until they learn to speak.
Learning to communicate is an ongoing process, so a person with Down syndrome also may benefit from speech and language therapy in school and beyond. The therapist may help with conversation skills, pronunciation skills, understanding what is read (comprehension), and learning and remembering words.
Routine everyday tasks that we do without thinking may not come so easily to a DS child. The role of the occupational therapist is to help a child with Down syndrome in attaining those functional abilities. Again, activities depend on the strengths and abilities of each child, says Dr Bhavani.
In early childhood the main aim is to attain self-help skills like eating, bathing, brushing teeth, dressing and undressing. Later, the focus is on preschool skills like writing and colouring, as well as using a computer.
An occupational therapist not only helps with fine motor skills and coordination, adds Judith. They may also offer special tools that can improve everyday functioning, such as a pencil that is easier to grip.
Despite some common physical features, it is important to remember that no two children with Down syndrome are the same. They are individuals, with different abilities, feelings, personalities and experiences. If you have a baby or child with Down syndrome, they will be unique in their own way.
– Judith Knight, WINGS Therapy and Learning Center
Beyond Early Intervention
As Judith points out, research indicates that early intervention improves outcomes for children with Down syndrome. This intervention can begin shortly after birth and often continues until a child reaches school age. After that, most children receive further therapies through their school or private early intervention centres such as WINGS.
For school-going kids, Dr Bhavani says that Special Education teachers help by working together with families to formulate educational plans. These plans are designed with specific learning goals for each child, based on the child’s capabilities. They also help provide appropriate assistive technology – devices to aid learning.
Drum Prodigy Ensemble, World Down Syndrome Day 2018. Credit: Down Syndrome Association (Singapore)
Dr Bhavani also suggests other helpful forms of therapy to consider. These include music therapy, which offers a creative outlet for DS children. It enhances communication skills and provides a good platform for social interaction. Art therapy is another form of expressive therapy using a creative process that can be helpful. Not to be overlooked is behavioural therapy.
Children with Down syndrome often become frustrated because of difficulty communicating, says Judith. They may develop compulsive behaviours, and may also have Attention Deficit Hyperactivity Disorder and other mental health issues. A psychologist, counsellor or other mental health professional can help them deal with emotions, and build coping and interpersonal skills.
Emotional and behavioural therapists work to find useful responses to both desirable and undesirable behaviours. First, they try to understand why a child is acting out. They then create strategies for avoiding or preventing these situations, and teach more positive ways to respond to those situations. Parents may also benefit from guidance on how to help their child manage day-to-day challenges and reach their full potential.
Useful Information for Parents of Babies and Children with Down Syndrome
The Early Intervention Programme for Infants & Children (EIPIC) and various therapy services are available at the following government-funded and private intervention centres:
- Down Syndrome Association (Singapore)
- KK Women’s and Children’s Hospital
- National University Hospital
- Singapore General Hospital
- Gleneagles Hospital
- Rainbow Centre
- Nurture Pods
- The Early Intervention Centre
- WINGS Therapy and Learning Center
Of course, the above list is not exhaustive. Contact SG Enable for a comprehensive list of centres, as well as for referrals to government-funded EIPIC centres in Singapore.
But ultimately, parents are their children’s main therapists, reminds Dr Bhavani. She shares five tips for parents of babies and children with Down syndrome:
- Each child has a different learning style, all with great potential. Understand the learning styles of your child during therapy sessions.
- Observe how your child thinks and what motivates him or her.
- Reinforce the skills that are learnt regularly and treat it as fun time.
- Learn to appreciate and be ready to reward every achievement, no matter large or small.
- Maintain a diary to write down all the milestones and work with the therapists to monitor progress.
There’s a common misconception that DS children have predetermined limits in their ability to learn, but this is entirely false.
– Judith Knight, WINGS Therapy and Learning Center
Therapy should continue as long as it takes to meet the goals at each stage of a child’s life into adulthood, Judith adds. It’s impossible to predict the degree to which a baby born with Down syndrome will be cognitively or physically disadvantaged. What is certain is that people with Down syndrome have the potential to learn throughout their lifetimes.
Their potential can be maximised through early intervention, good education, positive expectations, and encouragement from family, caregivers, and teachers. Children with Down syndrome can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace.
World Down Syndrome Day 2019
Buddy Walk & Carnival, World Down Syndrome Day 2018. Credit: Down Syndrome Association (Singapore)
Down syndrome doesn’t discriminate. It occurs in about one in 800 live births, regardless of race, gender or socio-economic boundaries. Yet people with Down syndrome constantly face discrimination. Every year on 21 March, activities and events take place worldwide to raise public awareness and advocate for the rights, inclusion and well-being of people with Down syndrome. But it’s not just about one day in a year. To be part of the ongoing movement to #LeaveNoOneBehind in Singapore, visit www.downsyndrome-singapore.org.
Our thanks go out to Dr Bhavani Sriram, M.B.B.S, M.R.C.P (Paediatrics), Minds Developmental Disabilities Medical Clinic, and Judith Knight, WINGS Therapy and Learning Center (WINGS), for kindly sharing their expertise and insights, as well as for their dedication to babies and children with Down syndrome and other developmental disabilities.
Header image: Source
All content from this article, including images, cannot be reproduced without credits or written permission from SingaporeMotherhood.