David and I are no different, and have great hopes and expectations for Ellie when it comes to school. We are realistic, however, and understand that PWS adds another level of complexity and challenge to the equation.
PWS, like many other genetic disorders, is a spectrum disorder. Every child will excel in different areas, and struggle in others...the severity is different for every child. School, for individuals with PWS is a spectrum as well. Some individuals will be in typical classroom settings, while some will be attend schools for special needs individuals. Some may graduate high school and (some) college, while others will not. The way I approach the school issue is simple and twofold. Working in the Academic Support Center, and with college students has helped me tremendously in this area. Also, the long talks David and I have shared about education, school, and college have been so important.
We want two things for Ellie:
- We want her to always try her very best & capitalize on her strengths
- We want her to be appropriately challenged academically, and have optimum support systems and resources in place to help her succeed
David and I are committed to helping her navigate school, whatever that looks like. We will help her hone her skills and strengths, and find her niche. There are bound to be struggles, and we'll be there work through those, discipline appropriately, and love her through everything. Even at a young age, I have discovered that Ellie is motivated by, and loves praise. She wants to see people get excited when she does something well and correct, she wants you to clap for her, and she loves hearing that she did a good job. This will be important as she gets older.
Most every individual with PWS faces some form of learning challenge(s). This past year, Ellie attended a half day preschool at our church. It was a typical classroom with all levels of children. She absolutely loved it and learned so, so much. It was a great fit for her, and her teachers were so willing to learn about PWS and help Ellie thrive in their class. There were times where Ellie fit right in with her peers, and times where I understood she is delayed. As a parent, of course, that is hard to stomach. But, hands down, Ellie grew academically, socially, and developmentally by being there. Every state has a program for children with special health care needs, and in South Carolina, Ellie automatically qualified (based on her diagnosis) for BabyNet services (Early Intervention services and therapy for ages birth to 3).
90 days before Ellie turns 3 years old, Ellie, her Early Interventionist, David and myself will have a meeting with the school district and Ellie will be screened to see if she qualifies for additional services through The South Carolina Department of Disabilities and Special Needs. Currently, Ellie is continuing to make progress in therapy, and we will navigate all this when it becomes time. Would she benefit from attending a special needs preschool? Should she stay at the program she has been at? What if she doesn't qualify? Those are all questions to think about and work through as we begin this new phase of life. We must work together with those in our community to establish the best "fit" and best foundation for Ellie in school.
It is highly likely that Ellie will have an IEP (Individualized Education Program). "The Individualized Education Program (IEP) is a legal document developed by the student, teachers, administrators, parents and other team members. The IEP helps students with disabilities in reaching their goals. According to the Individuals with Disabilities Education Act 2004, the IEP must focus on the student's preferences, interests, needs and strengths. All students, regardless of age or disability, can be involved in the development of their own IEP" (http://www.spart6.org/parentsandstudents/specialservices/selfdeterminationandstudentlediepmeetings.aspx). This document will help educators understand and describes how a student learns, the best ways they demonstrate that learning, and what teachers, administrators, and other education providers will do to help the student learn to their best potential. Ellie's will certainly have specific, detailed, information and outlines of food security, restriction and instructions.
School...it's something I hope Ellie loves and enjoys. When your child is given a diagnosis, you are told many, many things. Limits are and will be placed on your child, and theories of the future will be hypothesized. But the thing is, the future is not yet written, and quite frankly, Ellie is paving her own trail. Nothing is off limits for our girl, and we are all completely and utterly happy with being totally average. We will work and strive for extraordinary!
Meagan is proof of just that...love her!
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