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Striving for Autonomy

The Best Education for Students with Williams syndrome

Children with Williams syndrome have many similarities, but they are not all alike.  If we lump them all together, or make assumptions about an individual with WS who we just met, based on an individual or 2 we may have met in the past, we will probably be doing our new friend an injustice.  However, when it comes to education, a teacher’s knowledge of their similarities - especially in learning styles, will be extremely helpful.  And similarly, their knowledge of individual differences in WS combined with a better understanding of the potential strengths (and a willingness to look for those strengths when they may not be apparent), will help to insure that the teacher will be able to provide the best possible education for our sons and daughters with Williams syndrome.

And what is the “best possible education” for students with Williams syndrome?  In my view, it is an education that prepares our sons and daughters to be autonomous – to take their place in the world as decision makers.  I don’t mean just as adults, but throughout their childhood as well.  As parents, we sit in IEP meetings and we hear about life skills, and giving our sons and daughters the tools they need to be independent – especially with those famous ADLs - the activities of daily living, and we come to believe that skill independence is the key.  Time flies and suddenly our son or daughter is a teen or a young adult, and we realize that they can indeed brush their teeth and cash a check.  They can operate the ATM and ride a bus, and they can do them all independently – And so we think it’s time to do a happy dance.  After all, they now have what they need for an independent future, Right?  Not quite. 

As parents, we see these skills and we think our kids are ready to take their place in the community and then we find that they are not as prepared as we thought.  Far too often, they are lacking the breadth of knowledge they need to make informed decisions about when, or why, to use those skills of independence.  They have not received the information that comes from a well-rounded education, surrounded by others who have sought out their opinions as decision makers and they don’t really understand when to use their skills and how to make the types of informed decisions that are expected of young adults.  And all too often they even lack the confidence in themselves to try things on their own first and asking for help only as a last resort.  Too often they get in the habit of asking first...and again - far too often those around them – parents, relatives, teachers, friends - are happy to comply rather than challenging them to act on their own. 

Beyond that, even those young people with Williams syndrome who want to, and are prepared to make independent decisions, are often afraid to do so.  Why?  Partly it’s a part of who they are.  It seems to be "in their genes" that they don’t want to be wrong or to displease an adult.  They will only voice the decision that they think we want to hear...and very often the decision or choice that they voice is not made from a position of understanding and is NOT the decision they would personally like to make, or even plan to follow in reality.

How do we change this trend?  We need to do a better job of viewing our kids (and our students) as valuable members of their community (whether that community is a pre-school, or a post-secondary school – or anywhere in between.)  And it doesn’t matter what type of classroom they are in – there are students with WS who do wonderfully in an inclusive classroom, and others who do far better in a self-contained special education environment. 

Regardless of what their educational and home environment may look like, we need to do a better job of engaging them - of asking for their opinion and allowing their voice to be heard.  We need to do a better job of insuring that they have choices to make – not just in the classroom but in all appropriate aspects of their lives - to help cultivate and expand their interests.  We need to let each student know that they are valued, not just by their parents but by siblings, teachers and peers. 

So much of our children’s education seems to be the memorization of facts or learning the “steps” to specific operations – from operating a calculator to operating the drinking fountain, we are great at providing the “how” but for some reason we often leave out the “why”.  And the “why” is the most important part!  We may have told them why we were providing the skills the first time we showed them, but we left out that part during the following 27 times it took for them to acquire that new skill.  We need to provide students with collaborative learning experiences and meaningful activities within which to learn those facts and operations.

And we need to make sure that our children are exposed to experiences that will provide social, academic, and emotional success – because these are the components of a positive self-image that naturally lead to a growing self-confidence and self-esteem.  If our sons and daughters understand that they are a valued part of their school and classroom community throughout their education, and have the breadth of knowledge that is needed to become independent problem solvers, THEN they will become confident decision makers.

With better knowledge of both Williams syndrome and education in general, student profiles are changing and improving, but we still have a long way to go – many students are still isolated and not given the chance to prove all that they are capable of doing. It is the WSA’s goal as a national support group for individuals with WS, their parents and the professionals who work with them to do all we can to help insure that every individual with WS will be the best that they can be.

Through an assistive technology grant we have learned a great deal about how students with WS learn and what we can do to help them realize success in school and throughout their lives.  We are able to provide you with new ideas and tools to help students with Williams syndrome access a wide range of information and curriculums regardless of their classroom setting, and receive that well-rounded and expansive education, from both teachers and their peers that is needed to become autonomous.  As a result, students with WS are realizing success in ways that are not predicted by IQ scores and previously were not thought possible. 

With these tools and a mindset that our sons and daughters can acquire the knowledge and confidence they need to be decision makers, I believe that new doors will open for them, and that anything is possible.