What is Down Syndrome?

Down syndrome, named after John Langdon Down the English physician who discovered the Syndrome, is a genetic condition in which an individual has a partial or complete extra copy of the 21st chromosome.

All people with Down syndrome experience cognitive delays.  The effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.  Additionally, some people with Down syndrome have low muscle tone and other physical characteristics associated with Down syndrome that will likely affect how soon a child with Down syndrome will be able to sit up, walk, and speak.  Although a child with Down syndrome will learn how to do these and many other activities, it may be somewhat later than his or her peers without Down syndrome.

*Definition of Down syndrome taken from the National Down Syndrome Society (www.ndss.org).

IEP HELP

We all know that the IEP process can seem overwhelming and can be difficult for families. Did you know that there is help available to you to support you through the process?

Here’s a small list of resources in our area:

·        Parent Training Events through your local County Office of Education- Have you ever attended an event put on by your local SELPA? Many include childcare and a free dinner. Visit your SELPAS webpage for more information.

STAN county SELPA: https://selpa.stancoe.org/about-us

SJ county SELPA: https://www.sjcoe.org/selpa/

·        VMRC- Your regional center coordinator should be a point of contact for you and your family during the IEP process. Reach out to Valley Mountain Regional Center for more information.  

·        Family Resource Network – Parent training events are frequently available and did you know that they have a designated staff member available to read through your IEP and help make notes and an agenda for you to take to your IEP meeting? FRN serves families raising children ages birth to 22 years, with special needs. Their service area includes Amador, Calaveras, San Joaquin, Stanislaus, and Tuolumne Counties of California. There are no income limits or eligibility requirements. FRN serves families whose children have any type of special need, medical diagnosis, or learning difference. FRN also serves the professionals who work with special needs children. Contact Family Resource Network at 209-472-3674 or visit www.frcn.org for more information.

·        Parent Advocate – Megan Beckhart, a mom of a child with Down syndrome, is available on a volunteer basis to help support you during the IEP process. She is available to read through your IEP, provide suggestions and attend the IEP with you to provide support. Megan is passionate about education and inclusion. She was on the team who created the annual Down Syndrome conference for Educators and Parents, scheduled speakers for parent education meetings and has coordinated the Buddy Walk. She believes that parents and educators can help our kids achieve amazing things when they come together as a collaborative team. Her goal is to help everyone's voice be heard in an honest and respectful way during the IEP process.

Contact Megan at 209-648-7638 or meganbeckhart@gmail.com for more information.

·        Paid Advocates – Many of our TBODS families have utilized paid advocates to help them through the IEP process. TBODS offers small scholarships to help offset these costs for families, please email info@tbods.org for more information on Paid advocates and financial assistance.