Tonight I realized something that is a little hard to admit, but necessary. No one knows how to deal with my son. I didn't realize that no one knows how to deal with him, because, well... I know how to deal with him.
My son, Vinny, is an amazing little man, whom most of you either know very well or have read an awful lot about.
He also has a disability.
I don't talk about it like that often (okay... ever) because I don't think about it like that. That is something that only a parent of a child with a disability can understand. When it is your kid, you don't think of him as "a kid with a disability." It is just your kid. (On a side note, this realization has really helped me as a teacher in the way I teach kids with disabilities. It helps me to remember that they are someone's babies).
Nonetheless, Vinny does have a disability. He has a speech delay. He is behind in speech, and it significantly affects his ability to communicate.
I never realized before that people don't really know the right and wrong way to approach the issues caused by this, so I never said anything, but I probably should. So I will start here, since it is far reaching. If you truly care about my son and want to help and have a positive relationship with him, here is what you should know...
Things you should know:
- Marc and I are aware of Vinny's speech problem. You don't have to whisper about it or wonder if we realize it. We do. We are working on it.
- Vinny knows he has a problem. You will not be ruining some big secret if you let him know you don't understand him. Trust me... he knows.
- Vinny's problem is 100% physical. He is cognitively ahead of many of his peers. The source of the issue is only with getting his mouth to form certain sounds it currently cannot form. It is called a speech delay because it just means he is noteably behind his peers and will catch up, especially with help, which he is getting. He will be receiving therapy when he starts school.
What you should NOT do:
- Don't pretend you understand him because you are afraid you will hurt his feelings if he thinks you didn't. It is actually quite the opposite.
- Do NOT try to correct the sounds he makes incorrectly. He knows they are wrong. Trust me, he knows. He actually does want to make them right and has spent many hours with me just trying to understand things like how to put the tip of his tongue to his teeth to say "lion" not "wion." Unless you are a trained and licensed speech therapist, he does not need your "help" in pointing out that he sounds wrong. It just makes him self-conscious and makes him not want to talk to you. Sorry, but I am just being honest.
- If he asks you a question with a yes or no answer, don't just answer "yes" or "no" because he is so used to people just answering that without knowing what the question was, that he will likely ask you again and again and again. Just answer in a complete sentence. For example, if he says, "Did you get a haircut?" Then don't just answer, "yeah," try "Yes, I got it cut last week." It helps a lot.
What you SHOULD do:
- Ask for clarification if you don't understand what he says. Do make the effort to figure it out. He knows when people are brushing him off, and he gets his feelings hurt. If you have ever watched me talk to him, I say, "what?" a lot. It is just part of our life. He doesn't get upset, but he does know to slow down and emphasize the significant part of what he is trying to say to get his point across.
- If you think you understood what he said, but aren't sure, repeat it back. If you get it wrong, he will usually rephrase in different words to make sure you get it. He desperately wants to be understood.
- Ask me or marc or my parents or someone who is around him a lot if you didn't understand him. We do not get offended. Because we are around him all the time, we understand his substitutions. We comprehend his lingo. He substitutes the "t" sound for the "c" or "k" sound and the "w" sound for the "l" and "r" sound and the "d" sound for the "g" sound. It sounds complicated, but it isn't. He has a couple other weird sounds too, but we get it most of the time and are more than happy to translate. If I see that you are not understanding him, I usually translate anyway, but if you are a good faker, I might not know. Just say, "what did he say?"
- Explain it to your children. Vinny's closest friends have grown to understand that he can't help but say "Tywer," but this is a process, and one you can help along. If your child asks you why "that kid talks funny," you don't have to shush them in embarassment. Just explain that his mouth has trouble making some sounds and so that means he sounds a little funny. Then tell your children the main points of what I am telling you, "if you don't understand what he is saying, ask him to say it again or ask someone else what he said." Vinny really appreciates having friends who try to understand him.
Well... that said, I hope you can appreciate this open and honest look at things you should know if you love my son and spend time with him. Remember, he is just a child, not a child with a problem, but it does no good to ignore the elephant in the room.
Thank you for reading, and understanding, and for all of you who have always made great efforts, thank you.