Friday, September 16, 2011

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.



Please leave a comment. I love hearing from you.


Amanda Leigh Cowley said...

Hi there, from a fellow Follow my book blog Friday'er!! What a heartfelt article you've written. I remember taking my children to a play centre when they were little, and a lady was there with a young autistic lad. The children had tried to play with him, but he didn't want to interact. I remember the lady explaining that 'Oliver is a very special little boy, and he doesn't always like to play with other children.' It broke my heart. (

Frances said...

Thank you for leaving a comment. I like the way his mother explained his behavior. Being social is one of the biggest challenges I think. :(

LindyLouMac said...

Cristina I am here to welcome you as a follower to my blogs and as I love to get to know my readers follow you back. It is great to meet you. This is a good post one I can empathise with as I have a nephew with Asperger's. I will take your badge while I am here. I am not very technical and still struggling to get one for my Book Blog. PS, I do not subscribe to replies as my inbox would never cope. :)

MamaMunky said...

This post just brought tears to my eyes. You are such a beautiful person to care for your grandson the way that you do. I pray for you both, but you are doing just great. He may not be able to tell you that, but you are.

Frances said...

Thank you for coming by.
LindyLouMac I am not so technical either. My friend helped me with the badge. I will grab yours when you get one. :D
Mamamunky I am happy you liked my post. Thank you for the prayers. I am grateful I get to share his world even though it is difficult at times.

Amy Blackwelder said...

My goodness. I'm somewhat familiar with this as I am a teacher and have worked with severally autistic children and some with Aspergers. I commend anyone with the patience. It can be really challenging. Let me know if there is any suggestions you would like?

Anonymous said...

That's a such a beautiful post. I have friends with autism and friends who have children with autism. The daily struggles both go through never cease to amaze me. As with anything I think the more it is discussed and made to be "normal" then the better for everyone involved. Which is why I like posts like yours - it opens up a dialogue.

E. Van Lowe said...

My nephew has autism. He's a beautiful young man, but I know he has been a challenge. I loved your post. Sweet, sad, beautiful and revealing. Writing is the best therapy.


Raine said...

I haven't participated yet for the one-minute entry but this post opened my eyes further and it made me reflect too. I've only been slightly exposed to special needs kids during my college years when I visited a physio clinic. Your post reveals the strength and depth of your heart. Lovely post.

DMS said...

What an amazing post. Thank you for sharing with us. Autism is a real challenge and your grandson is so lucky to have you. Although you can't teach him what to do in every setting, the role playing you are doing is helping him. If you make the role playing/social stories into little booklets (with pictures, if needed)- that might help, too because he won't have to go over the different lessons with you, he can read them over himself. This might give you more time to work on other situations with him. Wishing you the best of luck. Oh- I highly recommend finding an autism support group (for caregivers and the children) not only will you get support- but your grandson will have interactions with other children who feel similarly to how he feels.

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