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Experts at the Sie Center for Down Syndrome provide comprehensive consultation for infants, children and young adults who have a confirmed genetic diagnosis of Down Syndrome. We partner closely with your child’s primary care provider. We provide services starting at prenatal diagnosis up to age 25 (children must be seen in our clinic prior to age 21 to continue to age 25). The Sie Center offers state-of-the-art evaluations by a large multidisciplinary team. Our team stays current on medical and developmental needs of children with Down syndrome.
Developmental Pediatrician/Nurse Practitioner
A developmental pediatrician and nurse practitioner are the medical experts who will evaluate your child and provide treatment recommendations for Down Syndrome. To perform a complete evaluation, they use information obtained during your visit to the Sie Center and from other sources, such as medical records, input from your child’s physicians, educational records, and records from psychologists, occupational and physical therapists, and speech-language pathologists.
The developmental pediatrician or nurse practitioner will review the medical and developmental assessment, along with current recommendations, to coordinate care and optimize your child’s health, development and quality of life.
Because of certain physical characteristics including low muscle tone, lax ligaments and decreased strength, a child with Down syndrome does not develop gross motor skills in the same way as the typically-developing child. A physical therapist will provide an evaluation and make treatment recommendations for home programming, which will be shared with your child’s primary care provider and community therapists.
Over the long term, a physical therapist will help the child develop good posture, proper foot alignment, an efficient walking pattern and a good physical foundation for exercise throughout life. Read an article about the goal of physical therapy for children with Down syndrome, written by our Senior Physical Therapist, Patricia Winders.
A speech-language pathologist has the information and expertise to help address the speech and language challenges faced by many children with Down syndrome. Most children with Down syndrome will be delayed in acquiring speech and language skills (especially expressive skills). The frustration commonly experienced with making their needs known may lead to behavioral, learning and socialization challenges.
Because children with Down syndrome are usually better at understanding others than expressing themselves verbally, speech therapy is a regularly recommended intervention to treat speech sound production disorders (pronunciation) problems, giving these children a chance to better communicate with others. Our speech pathologist will also explore other modes of communication to optimize your child’s ability to communicate. A speech-language pathologist will provide resources and demonstrate methods and at-home activities to help a child master new speech and language skills. These resources and methods can then be shared with the school and/or other community providers.
Augmentative and Alternative Communication (AAC) Speech Therapist
An AAC speech therapist works together with families, school teams and other professionals to develop and maintain individualized multimodal communication systems that support the child’s unmet communication needs. Since AAC can involve the use of vocalizations, verbal approximations, gestures, sign language, facial expressions, eye gaze, pictures, tangible symbols and speech generating devices, the role of the therapist is to identify the most effective AAC solutions, and foster the growth of meaningful communication and learning for each child and family. In addition to working directly with the child, the goal of the therapist is to lead and coach the family to feel competent and confident in using AAC strategies.
Professional Feeding Therapists
The Speech-language Pathologists and Occupational Therapist feeding specialists are primary professionals involved in assessment and management of individuals with swallowing and feeding disorders. Professional feeding therapists play a central role in the assessment, diagnosis, and treatment of infants and children with swallowing and feeding disorders. Our feeding therapists are available when there is concern about a child’s delays in oral-motor or oral-sensory development, oral intake, food refusal, picky eating, poor weight gain.
A psychologist provides behavioral assessment and parent training regarding management of challenging or unsafe behaviors, evaluation for dual diagnoses (Down syndrome and Autism), and desensitization to medical devices (such as hearing aids, glasses) or other procedures which may be causing your child distress. A psychologist also provides treatment planning and intervention strategies.
A social worker assists families in coping with the social, emotional, financial and psychological concerns associated with having a child with Down syndrome. Our social worker also assists families with locating community resources and can provide support for transition to adulthood. A social worker can act as a liaison between the patient, family, health care team and community agencies.
An occupational therapist specializes in fine motor and sensory issues for children with Down syndrome. This includes sensory integration related to daily living skills (feeding, dressing, self-care, play and leisure activities), fine motor skills, visual motor skills and visual perception, as well as social skill concerns. An occupational therapist assesses the unique needs of a child with Down syndrome, provides assessment, consultation, treatment recommendations and acts as a liaison between the patient, family, health care and school team within the community.
The education specialist provides support and resources to families surrounding the education system, specifically IEP development, curriculum adjustments and instructional modifications, as well as helping to understand the learning processes for children with Down syndrome. The education specialist also works as an on-going resource to families and their respective school communities to help support and ensure academic growth for all students.
Sometimes, patients need more than just behavioral strategies to address their mental health symptoms. In consultation with the psychologist, the psychiatrist evaluates patients for psychiatric medications. Anxiety, ADHD, aggression, and mood problems are all problems that may benefit from medication therapy. Together the psychiatrist and psychologist collaborate to develop a treatment plan that looks at psychosocial and medical factors that may be influencing the patient's presentation.
Registered Nurse (RN)
Our registered nurse (RN) assists with preparation of the patient chart for all new patients. At the clinic visit the RN provides a brief initial assessment, obtains an update on current medications, assists with any procedures and provides discharge instructions/patient education. Our RN also acts as a telephone liaison between providers in the clinic and the family as well as provides care coordination and telephone follow-up.
Administrative Service Coordinator
The Administrative Service Coordinator is responsible for high level administrative and customer service support for patients, families, internal staff and our team of providers. Our coordinator schedules patient appointments, triages all incoming phone calls and supports our administrative team as well as manages our patient flow during clinic sessions to assure that patient and family needs are being met efficiently during the clinical visit.
At the Sie Center, your child can receive a full spectrum of care from other medical experts right within our hospital. The hospital complex scheduler, our Center scheduler and our RN can assist in coordinating appointments with a other sub-specialties in the hospital as recommended. Some of the medical experts that collaborate with us on the care of your child with Down Syndrome include but are not limited to: The Aerodigestive Program, The Breathing Institute, The Heart Institute, The Neurosciences Institute, The Department of Endocrinology, The Digestive Institute and The Department of Otolaryngology, Audiology and The Eye Center.