FROM THE SERIES: AUTISM PARENTING
We went to a local mom’s group meeting and felt like misfits. These ladies were speaking a language we did not understand. We were all moms, but what we shared in common pretty much stopped there. Being at this meeting made us realize how different our lives are from those of neurotypical parents. On our ride home, we processed all that we had seen and heard and the emotions conjured up for us. We realized we needed to share what we thought about on our blog because so many of us can relate.
We overheard a conversation between Rebecca and Carrie. Rebecca was talking about how her 9 month old wouldn’t sleep through the night. She had to get up twice a night, give him a bottle, and soothe him back to sleep. She was exhausted she told her friend. She couldn’t think straight, her eyes were blurry and burned all the time, and she was finding it hard to keep her emotions in check.
If only Rebecca knew our friend, Cindy, who has a 16-year-old son with autism. She hasn’t had a full night of sleep for the last 16 years. When her son wakes up at night, there is no way to soothe him back to sleep.
A glass of water doesn’t help in fact, it makes him wet the bed.
Reading him a story doesn’t help, it over-stimulates him and makes his unexplained, uncontrollable night-time laughter even worse.
If she lets him watch a movie or tv, his noises get so loud that it wakes her husband and other children.
On the nights when her son has a tantrum, she can’t let him “cry it out” because he destroys his room and their house in an uncontrollable rage.
Even on the nights when her son decides to play quietly by himself, Cindy can’t ignore him because he can no longer be safely confined (like a baby, unable to walk) in a crib. The quieter he gets, the more scared Cindy becomes because then she knows her son is up to something. She worries whether he’s escaped out of his room or worse yet, out of the house.
So, for the last 16 years Cindy starts her day whenever her son chooses to get up. If he wakes up at 2:00am, that’s when Cindy makes herself a cup of coffee and sits with her son feeling all alone in the world. Cindy no longer complains about her situation. She knows it’s a strong possibility he will never outgrow his insomnia and she’s made peace with it.
Cindy knows she is the glue of her family. She has no choice but to move on with life and be a good wife and mom to her other children. On top of this, Cindy manages to be a good daughter and friend to many. Where does she find the inner strength?
Message to parents with children who sleep through the night:
If you happen to be out late and see a single, lonely light in the night, think about Cindy and all the other autism parents struggling with children who won’t sleep… and count your blessings.
We have more stories and thoughts to share with you from our day at the mom’s group. Please stay tuned…
For more information on our autism awareness series: AUTISM PARENTING, go to: https://ventography.wordpress.com/category/autism-parenting-2/
A Ventography! 
March 29, 2012 at 10:54 am
I need to read stories like this to remind myself of how far we’ve come. Even with my younger NT son…he is 3 and has not gone more than a month or two sleeping through the night since birth due to his medical condition. Sometimes I’m so exhausted I cry. I do know how good I have it right now compared to before, but I still need to keep things in perspective at times. Thanks for sharing.
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March 29, 2012 at 11:10 am
WOW – we feel bad for you having more than one child who won’t sleep! We’re so glad things are better for you now. We agree with you that it’s important to remember how far we’ve come. -L&M
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March 27, 2012 at 1:55 pm
that light is mine many times. I made peace with the night owl life, it is hard, and lonely, but if I do not do it, no one will, and my son will get into trouble, or worse yet gets hurt.
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March 27, 2012 at 4:48 pm
We admire you so much. -Leah & Molly
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March 22, 2012 at 12:51 pm
Once again the bell rings true! One of my 3 grands on the spectrum has always had sleep issues ~ so similar to the one shared here. He sleeps when he gets tired and is awake when he’s not and it has nothing to do with clocks or light or darkness. As he has grown physically his behaviors have had “harder to deal with” situations. A tiny 2 year old banging the wall ~ door`~ whatever ~ is bad – a 185 lb 12 yr old (he also suffers from Prader-Willi syndrome ) with a 2 yr functioning level is quite another story. Sharing a room with his brother who is 15 mos. older and higher functioning became impossible when one’s behavior reacted negatively with the other.. so sleeping thru the night – any night – became completely impossible. Mom, Dad and neuro typical older Sister have learned techniques to ameliorate the situation and a night without banging, breaking, etc. is a dream come true. What are they thankful for? A morning without a broken bed (the strongest wooden bed with extra metal supports cannot withstand the treatment one child’s nightly assault for long ~ eva! >GS> so she can then take care of her sister and she does it so effectively that I would defy anyone to “look” and see anything other than a typical, beautiful, 15 girl walking tippy toed out to the special bus that takes them to school each day as “Sissy” leaves and big sis rushes to grab her bkft, lunch bag and HUGE backpack to go to school at the local HS where she maintains higher than a 4. average, is capt of cheerleading squad, class officer,homecoming queen, and who works as a tutor twice a week for several hrs after school at the very school her sibs attend. How things will be next September when she is away at college (hopefully if accepted with scholarship) is going to be something else. My daughters motto: NEVER, EVER, EVER, EVER GIVE UP~ It’s just not an option..What do I say?…when you suffer a night of insomnia ~ say “thanks” ~ and say a prayer for those who cannot go to sleep for long every night.
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March 23, 2012 at 10:22 am
We are so inspired by people like you and your daughter (and grandchildren). We love hearing from people who are not going to give up and who still have their “fighting spirit” in tact. We love that you still find plenty to be thankful for. -Leah & Molly
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March 21, 2012 at 12:32 pm
Lots of sleep challenges in this household. My middle guy was up every 30 minutes to an hour the first nine months of his life—all day—all night. Then he wouldn’t fall asleep until after 11 the next 10 years. Not one of my kids ever napped. All the moms would say: Just rest when they nap. ???? Thanks for this post. 😉
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March 21, 2012 at 3:31 pm
“Just rest when they nap.” LOL! We can’t even remember the last time we indulged in such a luxury. Thanks for sharing. -L&M
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March 21, 2012 at 11:06 am
My heart goes out to Cindy!
Being a mom of both a neurotypical and an Aspergers child, sometimes I feel like Janus, not knowing which face to put forward, I live in transition, in constant reinventing of routines… that includes sleepless nights, or long days of listening to one subject, over and over and over and over again..
Cindy’s inner strength? It comes from the Universe! It’s built in all of us.. But when we are given this challenge (an autistic child) it is because the Universe has supplied that strength and patience to us more than to others.
Thank you for your candid and inspiring posts!
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March 21, 2012 at 11:11 am
We so relate to your comment about living in transition and always reinventing routines. We live that life as well. Thanks for your comment. -L&M
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