I work hard to advocate for my daughter Sara. When she was younger I needed to speak up for her; she didn’t use or have a lot of language. When she was four years old, Sara contracted encephalitis which caused speech and global delays. During the progressive process of her illness, day after day she lost more and more of her speech.  When we left the hospital, her vocabulary was down to about eight words. Slowly she recovered some of her speech with intensive speech therapy coupled with a good education plan. I strongly believe the immersion of typical children in her school day was an effective therapy separate from 1-on-1 and group speech therapy. This structure—incorporating special needs students with typical students in their grade—is called inclusion placement. Inclusion exposed Sara to the most children who had grade level vocabulary. Inclusion in some districts is hard to ask for. Discuss it at your special education meetings. Inclusion should be the first placement you speak about, always.

 

 Why am I thinking about education services this week, when I should be getting ready for Christmas??  I’ll tell you—a few things happened this holiday season that made me grateful for the opportunities Sara has had in education. I realize that Sara is speaking up for herself, asserting herself, and making her own friends.  She went to Walden Bowling Lanes for a Holiday Party for Beautiful People, a great organization that runs recreational programs for people with special needs. The director, Jan Brunkhorst, asked Sara for a favor. Why this so cool to me: The director by-passed me and went straight to Sara. Sara has built her own relationship with Jan and felt comfortable making a request directly to Sara. She wanted Sara to participate in a new fund raiser where Sara and her respite worker, Jamie, are going to place a collection box in their local village to help collect funds for the program.  The box has a picture of Sara’s summer baseball team. They noticed it was last year’s picture and quickly combed through Jamie’s iPhone until they found a picture they liked better to decorate the box.  Jan now considers Sara the ambassador of the program and will leave her in charge of this collection box.   So if you are out an about in the Ville, Washingtonville, and see the Beautiful People donation box, throw some coin or paper money in. Seems like a regular box, but for me it shows how far we have come: from an eight word vocabulary to an adult with complex relationships and an ambassador for one of her favorite activities. What a great joy it is to hear Sara speak up for herself and build her own relationships.  Lisa Bock

 

018