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  • Williams Syndrome Parent Handout

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    Pablo Perez
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    This document provides information about Williams syndrome including resources, a quote from a parent of a child with Williams syndrome, challenges associated with the condition, and takeaway messages for new parents. The biggest challenge is learning how to care for the child through various medical appointments and interventions. Stranger danger is also a concern as children with Williams syndrome are very trusting of others. The take-home message is to ask for support from others, especially in the early years when parents may feel overwhelmed.

    Original Description:

    Quick Reference guide to Williams Syndrome, 4th grade level.

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    This document provides information about Williams syndrome including resources, a quote from a parent of a child with Williams syndrome, challenges associated with the condition, and takeaway messages for new parents. The biggest challenge is learning how to care for the child through various medical appointments and interventions. Stranger danger is also a concern as children with Williams syndrome are very trusting of others. The take-home message is to ask for support from others, especially in the early years when parents may feel overwhelmed.

    Copyright:

    © All Rights Reserved
    Download as PDF, TXT or read online from Scribd
    Flag for inappropriate content
    17 views2 pages

    Williams Syndrome Parent Handout

    Uploaded by

    Pablo Perez
    This document provides information about Williams syndrome including resources, a quote from a parent of a child with Williams syndrome, challenges associated with the condition, and takeaway messages for new parents. The biggest challenge is learning how to care for the child through various medical appointments and interventions. Stranger danger is also a concern as children with Williams syndrome are very trusting of others. The take-home message is to ask for support from others, especially in the early years when parents may feel overwhelmed.

    Copyright:

    © All Rights Reserved
    Download as PDF, TXT or read online from Scribd
    Flag for inappropriate content
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    Resources

    Williams-syndrom.org

    thearc.org

    rarediseases.org

    Idonline.org
    Quote from a parent
    Interviewer: What is the biggest thing that having a

    References child with Williams


    syndrome has taught you?
    • Parent: The biggest thing we have learnt is that a
    person with Williams syndrome is no
    Kozel, B. A., Boaz, B., Kim, different to you and me. We all have different
    personalities, have different needs and A quick guide to
    C. A., Mervis, C. B., process information differently. We have a greater level
    Osborne, L. R., Porter, M.,
    & Pober, B. R. (2021).
    of acceptance and empathy
    by having a person with Williams syndrome in our lives.
    Interviewer: What have been the major challenges
    Williams
    associated with having a
    Williams syndrome
    (Primer). Nature Reviews:
    daughter with Williams syndrome?
    • Parent: At first it is hectic. Appointments are ongoing
    and seem to be never-ending.
    Syndrome
    Disease Primers, You are always planning for the next stage. Learning By Markens Fequiere &
    7(1)https://0634sdzbhmp01- how to feed and care for your
    Pablo Perez
    child with Williams syndrome is the first step. Then,
    y-https-doi-org.prxkeiser. moving on to therapy and the first
    stage of learning with early intervention and transition
    lirn.net/10.1038/s415 to school. It is a rare genetic condition
    72-021-00276-z Markens • Also, stranger danger is a big concern as Molly
    that is visible at birth, and
    accepts everyone as her best friend.
    Fequiere, MSOTS Interviewer: What is your take-home message to new can happen to anybody.
    parents of a child with
    Williams syndrome?
    • Parent: Don’t be afraid to ask for support especially in
    the early years as there are
    times that you will be overwhelmed
    What are the What to do
    signs?
    The most common signs are Feel free to look for a second opinion
    heart disease, developmental delays, when it comes to surgery; most
    intellectual disability, sensitivity to sound, healthcare providers are not familiar with
    Attention-deficit/Hyperactivity disorder, anxiety. this condition.
    People with Williams syndrome often have Inform your doctor of the specific needs
    musical interests and are extremely friendly with of your child.
    strangers.

    Things to Home ideas


    Reinforce safe behavior with family and
    friends who come to visit by practicing

    look out for personal space, appropriate greetings to


    improve social skills.

    Children with Williams syndrome are Organize medications and set a routine to
    extremly social and trusting; they also tend follow every day to stay healthy.
    to adventurous, leading to safety concerns.
    Williams syndrome has a greater risk of Try breathing exercises or relaxing before
    complications with procedures requiring going to sleep and after waking up to
    anesthesia. manage anxiety.
    75% of people with Williams syndrome
    experience heart problems that require Reward drinking water and eating fruits and
    surgery. vegetables
    Digestive system or stomach issues such as
    constipation, diarrhea and gluten
    intolerance are common in people with this
    condition, but drinking water, eating healthy
    foods, and exercising can help reduce these
    problems.

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