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Home » WSA Blog

We're Making a Difference...

11/08/2013 - 1:50 pm |

Terry Monkaba

How many times have we sat around the kitchen table at a family gathering and listened to our elders tell us how much things have changed – they love to remind us that it wasn’t that long ago that candy bars were a quarter, gasoline was less than $1 per gallon and you could go to a Saturday Matinee for just a dollar or two?  It is not just the material things that have changed in price and quality over the years.  As the WSA becomes more involved in its Assistive Technology Pilot Project and other education initiatives, I have been struck by similar profound changes in education for students with special learning challenges.  I hope that this is music to the ears of many of you who have young children.

I take time at every opportunity to follow the social media posts made by parents.  Many of you have heard about various programs and educational strategies that are helping students with WS achieve new levels of success, but have not seen those programs in your school districts.  I hear your frustration as you ask for help and wonder “how” or “if” you will be able to make a difference for your child.  YOU WILL!

When Ben was very young I remember thinking how fortunate we were that Ben was starting school in the 1990’s.  He would have the benefit of early intervention, and therapies were provided to help children overcome the developmental delays that are so common to those with Williams syndrome.  Ben, and all of our children with WS were sure to have what they needed to reach their full potential….right? 

Not quite.  It turns out that we were luckier than families of children born in the 60’s and 70’s for sure…But then we began to hear about the benefits that were apparent for some children when they were included in regular education classrooms for all, or part of their day or provided with better access to grade appropriate curriculums in their special education classrooms, and something called music therapy might be able to help as well.  We quickly learned that better wasn’t good enough after all, and many of us battled just as you are today. 

Unfortunately, without the help of social media it was much more difficult to learn from others and we often felt like we were the only ones involved in the battles.  Like you, we ached for higher quality programs – we hoped for classroom settings that provided the necessary staff support and curriculum accommodations to help our children attain success, and most of all, special and regular education teachers who would listen to us – who wanted to know what we were telling them about the learning profile of students with Williams syndrome, and who were willing to change their teaching style to help our kids.  

Fast forward to 2013, and it’s very apparent, that as frustrated as many of you still are, we have made huge leaps toward our goals.  Battles have been won, and the education that was better in the 90’s is far better still today.  Although many are still fighting for the perfect classroom environment, and better access to curriculum, many excellent programs have been created as well.  Even more importantly, as we (WSA) visit programs in different parts of the country through our Assistive Technology initiative, we are finding teams who are flexible and eager to learn – teams of both special and regular education professionals who are willing to utilize technologies of all sorts – from the most simple pencil grip to the most advanced computer-based programs to help their students with Williams syndrome access grade-appropriate curriculums in ways that were simply not possible in the past.  We can see the difference in the teens and young adults who attend our camps and workshops.  They are truly becoming citizens of the world – with broad interests and skills that were once not considered possible for those with Williams syndrome.

I remember printing an article in the newsletter that explored the “possibility” of a student with WS learning to type.  Today, most students with WS type faster than their parents.  What made the difference?  Teachers finally realized that typing didn’t have to mean utilizing the perfect hand positions, or all your fingers and thumbs – that it was OK to do things in non-traditional ways if you could reach the desired result.  I could go on and on with examples to help you all understand that things have changed.

The best news of all…on Friday, November 8th, the WSA is hosting education professionals for a workshop on Williams syndrome in King of Prussia, PA.  There will be 60 professionals in attendance.  Educators are coming from cities and towns across PA, NJ, NY and CT to learn more about the 1 or maybe 2 students with WS in their program.  The education community is changing.  A growing number of educators are listening to what we have to say, and they are willing to put teaching strategies in place to help our kids. 

Please don’t stop questioning, and don’t stop the battle, even when it seems hopeless… because it is not.  For some of you, change may be immediate, for others it may take longer, and some of us may have to be happy knowing that the battles we are fighting today are helping students with WS in the future, but we are ALL making a difference, and our sons and daughters are the winners. 

Terry Monkaba
WSA Executive Director

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The WSA upholds the following positions on inclusion. We believe that: 

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings 
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
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  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

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