Organizations
There are a lot of ways to offer your support, so check out the links below. You can obviously make a donation, but you can also buy things from the IDEA League store, or do your normal online shopping through a website that will donate a percentage of your purchase. Have a look at these sites, and feel free to contact me if you have questions or would like to work together with our family on a project.
- The IDEA League - A parents and physicians group dedicated to Dravet Syndrome and related genetic causes of epilepsy.
- The Epilepsy Foundation of Deleware - They have been very supportive and taken an active interest in AJ's case. You might also remember a picture of us pulling AJ in the wagon at their Family Run/Walk.
- Ronald McDonald House - The Family Resource Center at AI Dupont Hospital has been a tremendous help to us when we've had extended hospital stays. Its is staffed in part by the Ronald McDonald House, and there are many ways to support RMHC.
Language Development
There are many things you can do to help AJ (or any other youngling you know) develop their language skills. When you visit, get on Skype, or get a phonecall from AJ, here are some things you can do to help him grow.
(from our Christiana School Disctrict evaluation, 1/24/11)
- Use clear and simple speech for AJ to model.
- Repeat what AJ says to indicate understanding, building and expanding on what was said. "More milk?" "Would you like to have some more milk?"
- Ask questions that require a choice, "Do you want to wear your blue or red shirt?"
- Sing simple songs and recite nursery rhymes to show patterns of speech.
- Use photos of familiar people and places to retell what happened or make up a new story.
- Pause after speaking, giving AJ a chance to continue the conversation.
- Offer a description or clues, and have AJ guess what you are describing. "We use it to sweep." or "It is cold, sweet, and good for dessert."
- Encourage AJ to give directions, and follow them. "How should we build this tower?"
- If you're here watching a show with AJ, interact with him. Ask him what is going on, who the characters are, what they might be feeling or what might happen next.
- Try not to correct improper pronunciation, just model the proper way. "Get in the tar?" "Yes, we are going to get in the car."
