Bennie had an anonymous commenter on his blog ask some questions about how to approach special needs families. I must admit, I too am asked similar questions all the time, and of course my answer is complicated. The commenter asked,
Would you welcome interaction with other kids with Ben (Jenelle)? Or would that be intrusive?
How should we as parents teach our kids to interact with kids that may be less verbal?
I am never offended when people ask questions. Being curious and asking questions is the key to overcoming the stigma often associated with a disability. I am never offended by stares, pitying looks or comments - but I am offended when they make assumptions and I'll address that a little bit later.
I welcome interaction with Jenelle, but of course that has a caveat as well. I don’t want a child with a runny nose trying to touch her. She is medically fragile and she just can't tolerate all the germs that might come into contact with her. Usually when a child waves or tries to get her attention, I try to explain that she cannot see or understand. I explain that she will not respond with words. Sometimes they seem frightened at first, but then they get used to it. I never openly show a child Jenelle's Mic-Key button; usually I ask first if they want to see it. Sometimes this is unavoidable when we are feeding her, and sometimes that is when we get the most stares and questions.
Our biggest problem with Jenelle is that she looks normal. Her mic-key button is hidden, and unless she is in her wheelchair, people usually miss it. This is especially hard with children who expect her to react to smile or wave in response. However, usually with some explanation, they are fine with it. As a parent, I encourage you to teach your child that children like Jenelle are different, but they can still be your friends. Take cues from the special needs child's parents on how to talk to the disabled child, or to explain to your child what is wrong with this child. And as the saying goes, there is no such thing as a stupid question - so ask away!
Assumptions offend me the most. When I over hear someone say "that poor child" or "that poor mother" or "oh look at the little girl in the wheelchair" and I know they pity us. Or when they openly tell me they will pray for Jenelle because they assume her life is tragic. Or when I see other parents wipe away tears when they see us (and yes, I see the tears and your emotions.) Don't assume you know what is wrong with my child. We live a happy albeit different life. Jenelle is thriving and is happy. Do not pity us - pray for our strength, but not for a cure for us. This is the way our life is with Jenelle. And we are more than happy to share that with you.
Our hope is that Jenelle can change people's perspective on life. The world is sometimes so busy trying to be politically correct that that we often get past trying to get to the good in things. Communication is the key and assumptions won't get you anywhere. Next time you see us, introduce yourself, ask a question. We'll be glad you did!