Perhaps we met at the market or at a social event. Maybe you have a friend or family member who has a child that has a disability. Either way, there are things you may like to know and that is why you were given a card. Here is the 411:
When you meet a disabled person, speak to them directly, not to the person that they are with. They may not look at you eye to eye. This does not mean that they can’t see, hear or listen. This does not mean that they are “in their own world”. In Jess’s case, she takes information in all at once instead of in little pieces.
When someone uses a device or a picture book to communicate, this is referred to as AAC (augmentative and alternative communication). This is much slower than talking. When someone uses AAC, give them time to find their words and please don’t finish their sentences. Just because someone isn’t talking does not mean that they do not understand.
As for parents like me, I know you don’t know what to say. Comments like “I don’t know how you do it”, or “it takes a special parent to raise a special child” may be well-meaning, but we don’t hear it that way. I will try not to roll my eyes when hearing these phrases.
My child may not be perfect, but she is in my eyes. Jess is kind, pretty, people smart and has a great sense of humor. She may not change the world, however, the world would be a better place if it took the time to get to know her.
The following are a few posts that share more of our story:
- Let me introduce myself
- She’s no angel
- Why we chose Speak for Yourself
- Defining normal
- Jess using Speak for Yourself
- We have ways of making her talk
- Have AAC will travel
- There is more than meets the eye
- First date
- Rainy Days & Roxy
Thank you for taking the time to learn about Jess. Hopefully, if you meet another person with Angelman Syndrome, you will have a better understanding, as well as meet other people that use AAC.
PS- if you have questions, please feel free to ask.
Update: Three years later and Jess has given out over 500 cards.