Putting Up with Autism
I came across this blog, The One-Minute Writer, that I think has an awesome idea going on. Beth, who runs it, has a one minute timer on her blog. The idea of it is to write for one minute. She has a prompt and you can respond in her comment section or on your blog linking back to hers. How fantastic is that? There are rules so be sure to check out her Q&A if you want to participate. The prompt that I responded to is PUT UP.
Write about something in your life that you put up with.
My one-minute response can be found on her blog - just click on the link for The One-Minute Writer above.
My longer response would be:
Autism. Without a doubt this is what I put up with. My grandson, who is four and on the spectrum, lives with me. Everyday is a challenge, sometimes a heartbreaking one. For instance, once when we were walking outside to our door and he saw some children playing. There were 2 boys and a girl. He has played often with them. This day he stopped dead and leaned against the fence looking at the ground. I asked him what was wrong. He said ,"she don't like me. I try to be her friend but she says I'm not right. I try to be like the other kids but I don't know what I am doing wrong." You have seen this. You know it happened. You know it is going to happen again. What do you do? Your heart breaks. And the challenge is there. Staring at you. Daring you to make it right. So you pick up the challenge and you put up with autism because it is not going anywhere. Before he goes to school you role play "how to be a friend". After school you role play, " what to say when....". And you know this is still not going to do it because now he sounds like a robot. How do you cover every possible conversation? And even though you know it is not enough you keep doing it. Every day with the hope that never dies. The hope that he will pick up on some of the social skills he needs.
Then there is the sensory challenge. Junior hits every one but not consistently. So you never know when he is going to go into sensory overload or how. You just have to be ready. Ready for light to bother him. Sometimes from the sun, sometimes from lights. You learn to live without opening blinds all the way. You learn to keep the lighting in the house dim. You learn to time how long you can be in the store. Ready for touch to bother him. This is a toughie. Sometimes it's his clothes. Sometimes it's you. If you touch him to lightly it is like scraping his skin. If you touch him to hard it is uncomfortable and he pulls away. You learn where to buy clothes that have no tags. You learn how to touch with the right amount of pressure. You learn to let him come to you for a hug. And those you savor like it is nectar from God. Ready for sound to bother him. On sensory days he can have the most amazing things bother him. The sound of lights, the sound of water , the sound of a birds wings flapping, the sounds of wind, the phone ringing, normal talking, so many sounds. You learn that he can hear those lights way up high in the ceiling of the grocery store. You learn to wash dinner dishes in the middle of the night. You learn to shower when he is gone. You learn to fill the tub when he is out. You learn to turn the phone ringer off and watch for it to light up. You learn to whisper. Then there is smells and taste to deal with. Not to mention the meltdown that occurs when he is in overload and there is nothing you can do. You learn to make sure he is safe and that others are too. You learn to ignore the hostile looks. You learn to ignore the comments of "bad parenting skills." You learn to be grateful for that one sympathetic look. You learn to take strength from the one supporting comment. And your friends. You learn how much you love them. Without them you aren't sure how you would make it. So here is a huge thank you to my support: Jennifer Griffin, Robin Y., Robin G., Melissa, Sid, Annemarie, Rachel, Regina, Jamie, Sara, Iris, Cat, Bren, Donna, Susan Case and Jeni Decker. You have my eternal gratitude.
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