A King Park Family's Grief Turns to Hope

On October 11, 2009 the Weisse family’s life changed forever when their precious eight year old son Sean died suddenly.  Despite their insurmountable grief, Sean’s parents Kelly and Steven were determined to keep their son’s dream of helping other children with learning disabilities alive.  

With the help of their family and friends Sean and Kelly created the Sean Weisse Foundation and the First Annual Picnic and Family Fun Day was held in Smithtown in the fall.  The event was sold out to 600 people and with food, ice-cream and rides and games for the throngs of children who attended; the picnic was a huge success.  The Foundation raised close to ten thousand dollars at their inaugural event.

 “Kelly and I decided we would like to create the foundation after Sean passed away because we, as parents, had to fight for every service Sean needed,” said Weisse.   Sean was severely dyslexic and his parents had to spend close to ten thousand dollars to have him tested, get him tutoring and hire a child advocate in an attempt to get Sean the services he needed.  Sean’s disability was difficult on him and he wanted to know when he would learn to read and write like the other children.   “He did not want any other children to have to struggle the way he did, he also did not want to have any other children feel inferior in school,” Weisse added.

Sean’s parents said he was a very kind boy who only wanted to know things would get better for him.  When a child presents with special needs, unknowing parents begin what can sometimes be a long journey for services.  There is the testing process, an attempt to get an Individualized Education Program (IEP) or a 504 (pertaining to the Rehabilitation Act of 1972).  

Brett Fein is a LI attorney whose specialty is Special Education Law.  Fein’s third son was born premature and weighed under two pounds and he knows first-hand what’s it’s like to fight for services.  “Frequently children with physical or mental impairments do not qualify as disabled under state or federal law, these children may not need special education services, however, they do require some form of accommodations in order to fully benefit from school,” said Fein.   

There is a labyrinth of terminology that can be daunting to parents like FAPE (free appropriate public education) and IDEA (Individualized Education Act) or IEE (Individualized Education Evaluations).  Often parents will hire an attorney to help them through the maze but ultimately, there is special education committee that consists of parents, the child’s general and special education teachers, a school psychologist, a district representative and a parent advocate.  That committee comes to a decision about what services a child will receive.   

The Weisse family wants to help other families through the often arduous process of ascertaining special education services.  Thus far, one family has requested help from the foundation to get their child tested but the Weisse’s look forward to helping many more families in and outside of Kings Park.

“We have our entire families plus numerous friends and community members helping us every step of the way and the Kings Park Fire Department and we plan on having the annual Picnic and Family Fun Day every September” said Weisse.  To request a grant contact The Sean Weisse Foundation at sjwcommittee@yahoo.com or go to the website:  www.seanweissefoundation.com