Typically, children with Down syndrome have mild to moderate intellectual disability, which means they are slower to develop in all areas of conceptual development (e.g. skills in language, reading, writing, math, reasoning, knowledge, and memory), and social and daily living skills. Many people with Down syndrome can learn practical life skills, which allows them to participate in ordinary life with relatively minimal levels of support.
People with Down syndrome also commonly have cognitive delays, which primarily affect their short-term memory, auditory memory, and abstract thinking. Cognitive delay doesn’t mean every subject will be challenging for people with Down syndrome, though. Some people with Down syndrome can become experts in high-interest subjects. Every person with DS is different and has strengths and challenges where cognition is concerned.
Initially, many babies with Down syndrome have difficulty latching on to the breast, especially if they have a long NICU stay. This can be frustrating for mothers who want to breastfeed their baby, but with patience and guidance from professionals such as lactation consultants, many mothers are eventually able to nurse their babies. If possible, use a lactation consultant familiar with babies with low tone and DS. Some babies with Down syndrome also have difficulty swallowing at first, but there are ways to thicken liquids to help them safely swallow.
Some children may continue to have challenges when transitioning to solid food or may have food texture aversions; some occupational therapists specialize in working with feeding therapy.
Some babies with Down syndrome may require a nasogastric (NG) tube or a gastrostomy tube (G-tube) for feeding. This is not terribly common, but if it is required, you will be trained in how to manage tube feeds. Most children with DS who require these interventions need them only for a relatively short period of time.
Speech development in children with Down syndrome can be impacted in multiple ways, and speech therapy is essential. People with Down syndrome often have a smaller jaw, and low muscle tone can cause the tongue to protrude, affecting the mechanics of speech. This can be addressed using oral motor therapy. Early intervention is critical and speech language therapy often begins before the child has any functional oral expression.
Many children with DS have Childhood Apraxia of Speech (CAS). This is a motor speech disorder in which the child’s brain knows the correct word, but the child is unable to accurately produce it. Depending on the child, motor speech disorders can require specific intensive types of speech therapy, including PROMPT therapy or Dynamic Temporal and Tactile Cueing (DTTC) therapy.
Intellectual disability compounds the difficulty of developing language for a person with Down syndrome. Many people with DS learn to speak — and well — but it can be a slow process. The ability to communicate is critical, and children with DS can be supported in their communication growth by getting appropriate speech therapy and having access to multiple modes of communication, including baby signs, American Sign Language, and/or an augmentative and alternative communication (AAC) device. A recent study showed that individuals with Down syndrome use almost twice as much energy as other individuals to use their voice, so even if your child is babbling and talking, it is a good idea to give them alternative ways to communicate.
Most young children with DS will need physical therapy, especially during the infant and toddler stage of development, to learn to sit, crawl, and walk. However, most children with Down syndrome achieve these skills by the time they enter school and are able to participate in active play and sports. Some teens and young adults with DS go on to be highly proficient in sports within the Special Olympics program.
Children with Down syndrome may also have sensory challenges affecting proprioception and balance. Their fine motor skills, such as those necessary for self-feeding, writing, and dressing, may be delayed. Occupational therapy can be helpful for both fine motor development and sensory integration.
Physical therapy (PT), occupational therapy (OT), and speech therapy can be provided by your health insurance, Regional Centers, and your school district, depending on your child’s age. From ages 0-3, California Regional Centers will coordinate these services as part of early intervention. Many early intervention programs offer center-based care with OT, PT, and speech therapy embedded in the program. Others prefer to do therapy in the natural setting of the family home. At age 3, management of such services transfers to your child’s school district if they are eligible for an IEP; however, individuals with Down syndrome generally continue to have access to lifelong supports through their local Regional Center to include job coaching services, respite, and other services in California, if they meet the criteria for developmental disability.
Given these developmental challenges, it is not surprising that children with DS may develop behavioral issues that require intervention. Often, behavior is born out of frustration; providing alternative forms of communication can ease frustration, as can using visual prompts and memory aids. Relational behavioral strategies build on the strengths of children with DS in social skills. Applied Behavior Analysis has also been shown to be effective.
David Stein’s book Supporting Positive Behavior in Children’s and Teens with Down Syndrome is a great guide for any age group. Stein’s approach to behavior management is relational rather than the analytical approach used in ABA (which is primarily designed for children with autism). Another proponent of an alternative approach is Dr. Ross Greene. Alternatives to ABA use the individual’s social strengths to work toward more appropriate behavior. In both cases, proactive praise for good behavior is key as well as setting them up for success, and structuring their environment for positive outcomes.
Anecdotally, parents report that stubbornness or persistence is a big issue as well as “dropping and flopping.” Emily Mondschein talks about the issue of stubbornness and how we can turn it into a positive: “I love the stubbornness because I think a lot of times it's their only form of communication, and you can learn from that stubbornness. I think all behavior is communication, including stubbornness. So it's up to us to take that stubbornness and figure out how we can change the situation or address it so that we're helping that person, because they're speaking to us with that.”
In addition to your child’s pediatrician, your medical team may also include a developmental pediatrician and specialists such as a cardiologist, an endocrinologist, a neuropsychologist, a speech pathologist, an occupational therapist, a physical therapist, an audiologist, and more. To learn about medical concerns that are common in individuals with Down syndrome and how they're treated, be sure to check out our article Down Syndrome 101.
You can also learn more from our Therapy Glossary and Medical Specialists Glossary.
