The support system that allows my special needs child to thrive
My daughter, Liv, started in a special needs program with an IEP at age 3
A parent of a special needs child or someone who works in the public school system would undoubtedly be familiar with the letters IEP, which stand for Individualized Education Program. An IEP is a plan used to help ensure that a student with a disability receives accommodations, therapies, and goals tailored to their specific needs.
My 6-year-old daughter, Liv, has Sanfilippo syndrome, a neurodegenerative genetic disorder that affects her speech, gross and fine motor skills, and cognition. She started in a special needs program with an IEP when she was 3.
Liv’s IEP team consists of a learning strategist or special needs teacher, a kindergarten teacher, a social worker, a behavioral psychologist, a nurse, and physical, speech, and occupational therapists. Meetings regarding her care are held annually and conducted either in person or virtually.
Learning Liv’s IEP
Members of her school support team surround Liv Stoop on a recent Sanfilippo Awareness Day. (Courtesy of Erin Stoop)
I had almost zero experience with special needs kids growing up and no idea how formal these evaluations are, so I had to dive in headfirst after Liv’s Sanfilippo diagnosis.
IEPs are covered under the federal Individuals with Disabilities Education Act, and, while I am grateful for those who have fought on behalf of our kids, understanding your child’s rights can be challenging. Often, parents turn to other special needs parents for help in understanding and navigating the system.
Liv Stoop sports purple on World Sanfilippo Awareness Day. (Courtesy of Erin Stoop)
There are resources in each state that can help parents understand their child’s rights, however. The Cure Sanfilippo Foundation also offers support for a child’s IEP meeting.
This year, we transitioned Liv from a goal-oriented plan to a custom plan. She has reached her cognitive peak, so we don’t expect significant growth in terms of her goals.
Her IEP plan instead focuses on keeping her active, safe, and happy. It ensures she has a one-on-one aide all day and outlines the amount of time she will spend with each therapist per week, as well as other relevant details.
Liv’s experience has been nothing short of exceptional. We feel very grateful for the efforts of our local public school system and Liv’s elementary school team, specifically.
They have been amazing, providing excellent communication and assistance throughout her day. It is also encouraging to know that there are resources I can seek out if problems arise, to help support Liv and me as we navigate this.
We feel incredibly blessed and fortunate to be a part of this empowering program within the public school system. Public school staff don’t get enough credit for all the work they put in on behalf of students like Liv, who need a little extra love.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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