We often wonder how we came to be parents of a child with a disability. It certainly isn’t what any parent would hope for their child. It has changed our definitions of happiness, success, and family. Living with a child with Kleefstra syndrome has meant living life at a slower pace. We work harder to achieve milestones and appreciate them more when they arrive. Fortunately, we have had a lot of help from family, friends, doctors, therapists and teachers. Because of the rarity of this diagnosis, and the little it has been studied, we aren’t sure what the future holds for our daughter. We do know she is beautiful, charming, resilient and funny. We are very lucky to have her in our life.
Children diagnosed with Ks benefit greatly from early intervention consisting of physical therapy, occupational therapy, and speech therapy.
Virtually all children with Ks have low muscle tone. Physical therapy provides support for a child with gross motor delays. Therapists will assist the child in building gross motor skills such as rolling, crawling, walking, and climbing stairs.
Occupational therapy will help a child develop fine motor skills. This can also include sensory-integration, feeding, and self help skills.
Speech delays are another outstanding characteristic of Ks. Early intervention for speech is critical for these children to begin communicating. Speech therapy can often help with feeding issues also.
Other forms of therapy that have been successful and enjoyable for some children are hippotherapy (horseback riding), music therapy and water therapy. Some families have tried conductive education with positive results.
Families of affected individuals may benefit from the following forms of interventions, all of which can be practised in the home without the assistance of professional therapists and at little or no cost to the family.
Intensive interaction is an approach to teaching the pre-speech fundamentals of communication to children and adults who have severe learning difficulties and/or autism and who are still at an early stage of communication development
A video explaining the approach can be viewed on youtube.
Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order.
Page updated: 15-05-2017