I Don’t Want To!

SAM_0011This is a picture I took in Florence, Oregon a few years ago. All of these little guys were strewn all over the beach. No one knew what they were, where they came from, or why. As I walked along the beach, people kept saying “Don’t go out there without shoes on! They’ll sting you.” And I replied “I don’t want to walk on the beach with shoes on. I want to feel the sand beneath my feet. And if I get stung in the process, it is my fault.”

Why are we so afraid to say “no” to people? And when we do finally say it; we usually lie with an excuse so as not to hurt people’s feelings. We even have a hard time standing up to doctors and “professionals” because we feel like they have more power and knowledge then we do. But I want to make one thing perfectly clear; your child is YOUR child and if something feels off; DON’T DO IT! I will share with you a true story to prove my point.

My son was not speaking at 14 months old and by 18 months, he was finally able to go to speech therapy. Each week the woman would sit with him and yell his name and say words over and over again and wouldn’t give him a toy until he said the word. Of course, he never said the word, so she had to eventually give him the toys anyway. After a few weeks of this, I said “Look, he isn’t saying anything. In fact, he seems to have absolutely zero interest in saying anything. I was thinking about trying sign language instead.” She told me that as a speech therapist, she had been required to take courses on sign language. But she didn’t try it with him, not that visit or the next. I tried sign language at home and my son had no interest in my hands while I spoke. So, for the next visit, I said; “Isn’t there something else we can try? He has all of his flash cards memorized, maybe I can make pictures of things he likes and use them to communicate with him.” She told me he was making progress and to keep trying the sign language.

He of course, wasn’t making any progress (orally anyway). The words that most parents hear first “ma-ma” or “da-da” were nowhere to be heard from my son. He didn’t watch us talk and try and mimic with his mouth. It was as if; there was a wall where the words would be heard in his brain and then stuck. They had no intentions of leaving. He understood what we were saying, most of the time. But he never tried to utter anything in response.

When the state finally offered aid, due to his Autism-like symptoms, they sent a speech therapist out. I was really worried and frustrated at this point. She was very polite and asked how his speech was going and so forth. I told her about all the things we had tried and how he still wasn’t talking. She asked if I wanted to keep doing signs. I said “NO! I don’t want to do signs. He doesn’t look at my hands when I speak, he looks at my face. I want to talk with him by showing him pictures or something.” I expected her to look at me as if I were crazy. Instead, she smiled and said; “I think that’s a great idea. There’s actually a program called PECS; where the children learn to speak by use of cards. Take some pictures of foods he really likes and I will have them made into cards by our next meeting.” I was so happy! Someone not only heard me, but listened to my words and showed me a new avenue to try.

This is how my son must feel, day after day. He says things, but no one hears him. Not every child can use a verbal language. Not every child can use a motorized-visual language (like sign language). Sometimes you have to think out of the box. Sometimes you have to use what works for them and try and make it work for you. But most of all, you have to make sure to use what works for the both of you. If a professional tells you to do something, and it doesn’t feel right or you are getting the wrong results; say something. If that person doesn’t listen; get another opinion. There are many many professionals out there and having one in your corner makes this whole fight a lot easier. It’s nice to believe that they all know what they are doing, but not every child is the same. Just because your child has Autism, doesn’t mean they are exactly like that kid that has Autism over there. As unique as every grain of sand, so too are our children.

You have to stand up for them and for yourself. This can be the hardest part for some parents. But you have to remember; a child who cannot speak for themselves cannot defend themselves against certain foes. If a friend asks you out for a play-date at the movies, and your child has auditory sensitivity; say; “I don’t want to take them into a place that will over stimulate them. How about we try the park instead?” It doesn’t matter how big or small the topic is. If you know it isn’t right for you or your child, then say so. You don’t have to hide behind your lack of degree or the thought that people won’t like you. If a professional won’t listen, then they aren’t very professional. If a friend won’t make allowances or listen to your requests, then they aren’t very good friends. Life with a child that has Autism is hard enough. Don’t make it harder by creating meaningless battles, or by making allowances that will cause your family more trouble. It’s ok to be heard. It’s ok to stand up for yourself and your child. It’s ok to say; “I don’t want to.” Just remember to be respectful when you do it, we’re all human after all. Good Luck!


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