Thomas Center for Down Syndrome Services

  • What to Expect

    Your initial visit allows us to gain as full an understanding as possible of the strengths and challenges of your child with Down syndrome. We appreciate you filling out the intake questionnaire prior to your visit. Our social worker will communicate with you prior to your visit to arrange completion of the questionnaire.

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    + Infants and Toddlers

    At your first visit, you will meet with a nurse. After the nurse speaks with you, all infants and toddlers are evaluated by a team of specialists during the same visit. This allows us to examine early feeding, movement, and speech skills while asking for background information once. The team includes the developmental-behavioral pediatrician, social worker, speech-language pathologist, occupational therapist, physical therapist and dietitian. The team takes time to listen and develop a plan for your child with you. Our goal is to help you understand your child’s health needs and next steps in development, and access any supports your child needs.

    While the list of providers may look overwhelming, most families have been pleased with the ease and coordination of this visit. We do understand that one-size does not fit every family and for that reason separate appointments with providers are also available.

    The team assessment begins with a review of the information on the questionnaire, any other information you have brought and a detailed developmental examination. We will discuss with you additional testing we recommend, if any, then review with you our recommendations for a treatment plan. This may include education about the syndrome, recommendations to support feeding, motor skills and speech, medical treatment, or referral to other specialists if necessary.

    + 3 to 8 Years of Age

    Children in early school years are scheduled for appointments on one day in a back-to-back fashion with a developmental-behavioral pediatrician and social worker, speech-language pathologist, physical therapist, and occupational therapist. This allows each specialist to provide a more in-depth look at skills specific to those early school years. Our dietitian is available to meet with the family during the visit. Our educational specialist is also available to meet with families to discuss school-related needs during this visit. If you have school concerns, we recommend bringing a copy of your child’s IEP or 504 to the appointment.

    After the morning of evaluations, a follow-up visit will be scheduled with the family, without the child present. At this follow-up visit, we will provide you with a copy of the evaluation reports and review recommendations for a treatment plan. This may include recommendations to support motor skills, language development, medical treatment, behavioral assessment or treatment through a psychologist, referral for cognitive or academic evaluation, or referral to other specialists if necessary. Psychological testing and behavioral support are recommended on an as needed basis. Specialized evaluations for augmentative and alternative communication are available separately.

    + 9 to 21 Years of Age

    Children are seen by an advance practice registered nurse (APRN) specializing in developmental and behavioral pediatrics. This assessment begins with a review of the information on the questionnaire, any other information you have brought and a detailed developmental examination. We recommend bringing a copy of your child’s IEP or 504. Referrals to specific specialties are made based upon the needs of the child and family. Psychological testing and behavioral treatment is available on an as needed basis. Referrals for special educational consultations can be made. Specialized evaluations for augmentative and alternative communication are available separately. Our APRN and social worker also assist with transition to adult-oriented supports within the community. Information regarding SSI, guardianship, Developmental Disability Services, and the waiver system is provided.

    + Follow-Up Visits

    Follow-up care by the Thomas Center varies depending on the needs and age of the child. For infants and toddlers, we may recommend follow-up visits every 6 months. For young school-age children, at a minimum, we may recommend annual visits. For older school-age children, we may recommend bi-annual visits.

    Should the family pursue speech, occupational, physical, or behavioral treatment at the Thomas Center, visits will be scheduled to support the treatment needs of the child and the family.