Occupational Therapy and the Child with Down Syndrome
by Maryanne Bruni, BSc OT(C)

If you are a parent reading this, you likely have a child with Down syndrome, as I do. My intent with this article is to provide you with some information about how an occupational therapist (OT) may be able to help you and your child. Occupational therapists who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques. Occupational therapists focus on the child’s ability to master skills for independence. This can include:

• Self-care skills (feeding, dressing, grooming, etc.)

• Fine and gross motor skills

• Skills related to school performance (e.g., printing, cutting, etc.)

• Play and leisure skills.

When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses. At this stage an OT may become involved to:

• Assist with oral-motor feeding problems (this can also be addressed by speech pathologists). Due to hypotonia and weakness of the muscles of the cheeks, tongue and lips, feeding is difficult for some infants with Down syndrome. OTs suggest positioning and feeding techniques, and can be involved in doing feeding studies, if necessary

• Help facilitate motor milestones, particularly for fine motor skills. Occupational therapists and physical therapists work closely together to help the young child develop gross motor milestones (e.g., sitting, crawling, standing, walking). OTs work with the child at this stage to promote arm and hand movements that lay the foundation for later developing fine motor skills. The low muscle tone and loose ligaments at the joints associated with Down syndrome are real challenges to early motor development and occupational therapy can help your child meet those challenges.

When your child is a toddler and preschooler, she will likely have some independent mobility and will be busy exploring her environment. To assist her development, you will want to provide her with many opportunities for learning, you will want to encourage the beginning steps in learning to feed and dress herself, you will want her to learn how to play appropriately with toys and interact with other children, you will be encouraging speech and language skills, and you will continue to provide opportunities for refinement of gross motor skills. At this stage an OT may become involved to:

• Facilitate the development of fine motor skills. This is an important stage in the development of fine motor skills for children with Down syndrome. Now they will be developing the movements in their hands that will allow them to do many things as they get older, but many children need some therapy input to ensure that these movements do develop. Children do this through play; they open and close things, pick up and release toys of varying sizes and shapes, stack and build, manipulate knobs and buttons, experiment with crayons, etc. Your child may face more challenges learning fine motor skills because of low muscle tone, decreased strength, and joint ligament laxity.

• Help you promote the beginning steps of self-help skills. An OT can help parents break down the skills so expectations are appropriate, and can suggest positioning or adaptations that might help the child be more independent. For example, a child may have more success feeding herself with a particular type of spoon and dish.

Then your child enters the school system and the focus of your energies changes somewhat again! You help your child adjust to new routines, you attend school meetings to plan your child’s educational program, you focus on speech and communication, you help your child practice fine motor skills for school (such as learning to print), you expect your child to develop more independence in self-help activities, and you search out extracurricular activities that will expose your child to a variety of social, physical, and learning experiences. At this stage an OT may become involved to:

• Facilitate fine motor skill development in the classroom. Many OTs work in the school system and provide programs to help children with Down syndrome learn printing, handwriting, keyboarding, cutting, etc. They will also look at physical positioning for optimal performance (e.g., desk size, etc.) and assist with program adaptations based on the child’s physical abilities.

• Facilitate self-help skills at home and at school. As with all children, our kids with Down syndrome vary in personality, temperament, and motivation to be independent. Some children with Down syndrome have a desire to do things themselves, such as dress and feed themselves. These children may learn these skills by watching others and participating from a young age. Other children may be happy to let others do things for them, and may resist attempts to help them learn these skills. In these cases, an OT may be able to help a parent work out these challenges while helping the child develop better motor skills to be successful in self-help skills.

• Address any sensory needs your child may have. Sometimes a parent has a concern about things their child does that may relate to the child’s sensory development. For example, a child may excessively put toys in her mouth, she may have poor awareness of her body in space, she may squeeze everything too hard or drop things a lot, or she may not tolerate very well some routines like washing and brushing hair. An OT can offer suggestions to help the child and parents deal with these issues.

As parents we must be concerned with the well-being of our child in all respects. We have so many things to think about and keep track of: medical and dental needs, motor and communication needs, educational needs, advocacy, social and behavioral needs; the list seems to go on and on! We need the help of trained professionals to guide us and to work with our children to help them achieve their potential in life. An occupational therapist is one member of the team that we can rely on to provide professional assistance throughout the growth and development of our children. In Canada, occupational therapy services for children with Down syndrome can be accessed through hospitals, home care programs, infant development programs, specialty nursery schools, public schools, and through private therapy services.

(Editor’s note: In the US, OT services can be obtained through Early Childhood Intervention programs, public and private schools, and from private therapists.)

Further information about fine motor development can be found in my book Fine Motor Skills in Children with Down Syndrome, published by Woodbine House (800-843-7323) in 1998.