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As parents of a child with disabilities, our greatest fear is, "What is going to happen to my child when I am gone?” Will Stephen be able to communicate, read and write by the time he graduates high school? Will Stephen be capable of living independently as an adult?
Stephen's co-impairment of hearing and vision create unique educational needs. Stephen is legally deaf-blind. This means that Stephen needs modified educational materials to teach language and literacy.
The New England Consortium of Deafblind Projects has been helping Stephen since age 2. A deaf-blind educational consultant visits Stephen at school and makes recommendations. This service is free of charge to the parents and the school district. The recomendations will help Stephen to aquire formal language. The materials needed to implement the recommendations are expensive!
We've been struggling to make education accessible to Stephen for the past 5 years. At the beginning of this school year Stephen had shorter school days than kindergarten. His classroom had 12 children with multiple physical handicaps and only 2 adults. Most of the children are non-verbal, like Stephen.
Children with disabilities are entitled to a "free and appropriate public school education" under the Individuals with Disabilities in Education Act, however enforcement of the law is the parent's responsibility and it is not free! The average cost of legal fees is $6,000 - $8,000.
We cannot afford a lawyer so we are currently representing ourselves in legal proceedings. We will continue to educate Stephen at home. Our homeschool expenses for the next year are over $1,000. Our goal is to raise $539 toward yearly subscription fees for educational materials.
Stephen uses both ASL and a communication app. We have been teaching ourselves ASL since Stephen left the birth to three (early intervention) system and entered the public school system. We currently use a subscription to Signing Savvy for $49.99 a year. This does not include community sign language classes at a cost of $420 per semester for mom and dad.
Stephen uses a communication app on the iPad called Proloquo2go. This app meets Stephen's vision and parental restriction needs. After many hours working on our first and less expensive app, Stephen deleted the app and the app did not have back-up options! Stephen's current app costed us $220. The good news is this app will grow with Stephen and be suitable all the way through adulthood. This app can be backed up and synced to his app at school.
Stephen's vision needs include 4" symbols (because symbols are more difficult to interpret visually than photos) and large print. The goal is for Stephen to learn to visually interpret PECS (picture exchange communication systems). Stephen needs reduced visual clutter (meaning solid background, no patterns, no visual distractions - i.e. the differnce between finding someone in a crowd and locating one person in an empty room.) Stepehn also needs reduced visual novelty (meaning using consistent and familiar pictures and symbols in language and literacy.)
Very few materials are available that meet these needs. Creating our own educational materials is both time consuming and even more expensive than purchasing adapted materials. We would like to purchase a subscription to the Unique Learning System (which would coordinate with Stephen's communication app.) This will allow us to spend more time teaching Stephen and less time preparing educational materials. The Unique Learning System will cost $429 a year. This is an absolute necessity for Stephen to develop literacy! We want Stephen to grow up to be able to preform certain tasks like taking a bus or cooking a meal independently!
Stephen will need to be literate to have even the smallest amount of independence as an adult. Stephen is currently 5 years behind in school (meaning he has not yet mastered his pre-school goals.)
In an effort to support literacy we subscribe to Reading Rainbow. This subscription costs $59.98 a year. With this interactive story book app, Stephen is enjoying bed time stories every night :-) Stephen's vision impairment makes reading difficult and using the iPad is extremely motivational as well as practical. Stephen has Cortical Vision Impairment. Devices like the iPad and iPhone are backlit and this greatly improves his functional vision.
Stephen needs your continued support! Your donation will help us to purchase educational subscriptions to Signing Savvy, the Unique Learning System, and Reading Rainbow for one year! This will allow us to continue to meet Stephen's educational needs at home, regardless of whether or not his needs are met at school. We realize it will be difficult to raise $538.97, let alone raise the money we need to hire a lawyer. We've decided to minimize our budget by trying to raise only the money needed for homeschooling!
Please donate whatever amount is within your means even if it's only $5. Every little bit counts! Your donation gives us hope for Stephen's future!
Thank-you so much for your support!
Love,
Julie, Steve and Stephen
P.S. Donations are accepted through paypal. If you do not have a paypal account you can create an account or use paypal as a guest. Click the contribute button at the top of the page, when you are asked to login to paypal the links to create a paypal account or use as a guest appear below the login fields. Thanks again for your support!
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