Do you have a vision for your child with Williams syndrome? Is it written down so you can refer to it, update it, and remember exactly why you are working so hard every day to overcome the obstacles in your child’s path? Lisa and Ned Portune read all the things that their child...“probably wouldn’t do," and then set out to help Erin be the very best she could be.
Looking back to when Erin (now 18) was diagnosed at age 22 months, it may seem disingenuous to say our vision for her has never changed – but in essence, that’s the truth: it has not. There may be a little evolution in the specifics, but overall our goals have remained the same. Our vision was always one of high expectations – that Erin would be expected to achieve to the highest of her own personal potential without preconceived limitations. And she has proven up to the task of fulfilling this vision.
When Erin was diagnosed, we followed a fairly typical pattern of emotional response: from relief to grief to belief. Relief came in the form of “Thank God, we finally have a diagnosis!” Grief followed with “She will never have the life we dreamed about for her.” And belief came with acknowledgment of new challenges and obstacles but a will determined to “Have high expectations and fight to meet them.” Little did we know how much the word “fight” would come into play for years to come.
We traveled through the first two phases quickly. At the time, we were new to Williams syndrome and knew very little of the outcomes and experiences of others before us. We learned quickly that we weren’t supposed to set our sights too high. Erin would never… ride a bike, learn math, read past a 3rd grade level, study beyond a 6th grade level, go to college, have a professional career, live on her own, support herself… fill in the blank with any number of other “won’ts.” While we didn’t know where she was on the curve, we decided that no one – not the doctors, teachers, specialists, nor us – no-one had a crystal ball, and no one knew with certainty what Erin would or would not achieve.
We were determined to take each “won’t” as a challenge toward expectations and refused to believe that at age three, Erin’s potential was already determined and we should expect any less of her than we did of our other children. So, we got to work on “actionable belief” right away in pre-school including therapies five days a week (occupational, physical, speech, music, and hippotherapy). The schedule was grueling – but we believed we had no time to waste.
Erin was behind, and once she began 1st grade, we started fighting even harder – being behind wasn’t good enough. We embraced the IEP process completely, as its purpose is to close the gap. We stated that our long term goal was for Erin to graduate from high school at 18, go to college, and someday live independently. We had friends shake their heads and silently believe we were in denial. We had teachers tell us we were unrealistic – and even erase our goals from an IEP. But, we kept those high expectations and fought harder.
We pushed any and all who didn’t climb on the bandwagon with us – including Erin. If a teacher cut Erin a break because her behavior was “so cute” we asked the teacher if that would still be cute at age 21 in a job interview. It is so easy to get off track. We pushed teachers to push Erin, to expect more of her – make her work to her potential. We told classmates they were allowed to include her – and correct her. We extended her day to encompass all the services. She worked with tutors over her summers, 4 hours a day/five days a week. We pushed Erin – many times to tears.
We fought for inclusion - and that’s all she’s ever known - because the world isn’t segregated and our goal was for her to be independent in the world. We fought for differentiated materials to help her learn in a way effective for her, we fought for reading, and reading, and reading… and math. We sued the school district for not making progress. We spent years where school meetings lasted days and were attended by superintendents and multiple lawyers. We recorded every word spoken, and every conversation was documented. We proved time and again that Erin wasn’t the problem – the culture of low expectations was to blame. We advocated daily… and, it was exhausting.
But along the way, an amazing thing happened. We found educators who also believed that high expectations and solid supports can lead to exceptional outcomes – and Erin made up significant ground. We turned others into advocates. Erin learned, and passed, algebra and geometry, history, and biology. She learned to read well – and reads today for enjoyment. She worked two summer jobs successfully, she graduated high school at 18 with a diploma and was accepted into a 4-year fully inclusive college program.
The path has not been easy, but we got here because our vision remained intact - a vision where we simply expected Erin to achieve to the best of her personal ability and potential, and we committed ourselves to fighting to remove the obstacles in her way. And in the fall, Erin is going to a university program 10 hours away from home (The LIFE program at Coastal Carolina University) where she will be just another student, living in just another dorm, going to just another class, taking the next step towards independence – where she will define her own vision.
-written by guest bloggers Lisa and Ned Portune