Elusive Sleep

I’m so thankful that we’re back to school today. Long breaks are really tough for our family. Most families look forward to vacations, sleeping in and time off. Not so in this household. A break from routine brings chaos. Liam just does not do well with a lack of structure. It’s been a tough adjustment. We’ve never been a structure oriented family. But we are learning to be and trying to prepare for the forthcoming summertime.

The end of the school year is coming, and while I look forward to warm weather and playing outside, I dread it. It’s always a really hard time for me. Tom is not home and the kids are out of school. Life is much, much harder without the routine.

Last night was rough. Liam was having a hard time falling asleep, and he kept getting out of bed and coming downstairs. I tried everything imaginable. I must have put him back to bed 20 times. Lilah even tried to step in and help. Nothing worked until I was eventually too worn out to fight it anymore. Just like discipline, none of the traditional techniques really work with our children on the spectrum. There is no amount of logic, empathy, punishments, threats to take away privileges, all out begging, that work. Liam lives in the moment, controlled by his impulses. He’s not capable of anticipating consequences for his actions. Finally, I begged, “Please, just let me get some sleep. I’m going to wind up sick and in the hospital, and then I really won’t be here for you.” I was dingy, and that was a big mistake. The next hour Liam was crying, frightened and worried. He asked who would take care of him, and what would happen to mommy. I felt horrible. Did my desperate attempt to beg for his cooperation make him stop and just stay in bed? No, it did not. I tried my best to keep it up. “You can’t let him get away with it,” people will judge. I realize that, but at some point you do get worn down.  I have found a lot of stamina and energy I didn’t realize I had in these 9 years with Liam, but there still comes a point when you just can’t fight it anymore. 

Liam still winds up in our bed eventually every night. That’s because at some point, after 10-20 times of walking him back upstairs, I just cannot do it anymore. There are some parts of me that doesn’t mind having my sweet boy beside me. The problem is he’s a restless sleeper, and he’s developed a habit that’s some variation of restless leg symptom. It’s a condition I’m familiar with. It runs in my family, and I experienced it when I was pregnant. Liam has developed a habit of wedging his hands and feet under my back. He’s seeking deep pressure to soothe him to sleep. It’s a sensory seeking behavior that lots of kids with autism have. I have talked with him about it. “Why do you do this? Can you please stop? It keeps me from sleeping, and I need some sleep.” He just says, “I can’t sleep,” or “I can’t help it.”

I’ve not had a solid night’s sleep since having kids. If I had the chance now, I think I’d still wake up worried. On the rare occasion there is a night Liam does not wake up, I wake up wondering if he’s ok. I know this is the way of life for those on the spectrum. Liam seems to arouse consistently every couple of hours through the night. I wonder if he ever gets any real deep sleep. No wonder he gets so tired every day. He needs rest in the afternoons. It’s a lot for him to get through a full day of school.

I’m actually conditioned and surprisingly ok with not sleeping very much. Some friends and family wonder how I can tolerate it. But you do get used to it. And then there are times when you just feel all out tired. Tired of everything, the battles, the worry, your mind with 1,000 things racing through it. I had a dream the other night that I was going mad, like I was losing my mental capacity. It was just the stress of a tough week, and things will get better now that school is back in session. We’ll get used to Tom being away, and we’ll eventually adjust, as we always do.

Writing about it helps me process it an overwhelming fury of emotions. People will thank me for sharing something so personal and offer words of support. I do appreciate it. I also hope people realize I’m not really looking for sympathy. I’m just venting, and I’m also hoping there are other moms and dads out there who relate and who feel they are also not alone. It has helped me through the years to read the blogs of other autism moms and dads.

I have a few hours now before the after school pickup routine starts. I have lots to do - managing the household, preparing for our trip to New York,  a dozen or so phone calls I need to make, going back to battle with my health insurance company. I’ll only get about half of it done. That’s ok. I’m doing the best I can. I do always try and keep a positive attitude. I am proud of myself for that.




Alison Peterson
Alison Peterson

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10 Responses

Debbie
Debbie

May 09, 2016

I loved this piece!! I can fully relate to the exhaustion, rewards, defeat, optimism, glass half empty, yo-yo of being a mom of a child on the spectrum. I love how u wrote that u aren’t looking for sympathy- u just needed to vent! I feel the same way!! Letting me vent sometimes recharges my battery. So, vent away…..!

Connie Bishop
Connie Bishop

May 01, 2016

Alison, I had no idea you existed until about 30 minutes ago. I started googling cheap trick after watching the Hall of Fame. I’m sitting in bed feeling sorry for myself. I’m tired. I’m so tired. On the nights my kiddo sleeps I want to sleep so bad, but I just lay here waiting for him to wake up…I know he will…My days and nights are so turned up side down. It seems like no one gets it. Just one day of normal – is it too much to ask? I want to make my daughters day – maybe go get our toes done, maybe go shopping, but I’m tired. I feel like autism has stolen my strength. I need to fight the school again, but I have no idea how.

I think your program is awesome. My kiddo is just starting to like music, so it’s nice to have something to share with him. I’d say stay strong, but you’ve already heard all that stuff LOL….My motto – just make it through the day. :)

Laura Rich
Laura Rich

April 25, 2016

Hi, our 4 year old son is austic and I caN relate with you. Trevor, was on Vitamin D during the winter months it did help it was the liquid kind prescribed by his Pediatrcian. Make sure you have a lot of sunlight coming in your home. A structured lifestyle is helpful. Every child on the spectrum is different and there is always trial an error. Please, buy this book understanding your childs sensory signals 3 rd edition. Written by: Angie Voss. IT has hints to help with sleep and much more!!!! We love this book and tackling one issue at a time with our son. Be strong and remember you are not alone!!!!!!

Loren Dearborn
Loren Dearborn

April 23, 2016

You have all my sympathy. That lack of sleep is so hard!

I third the weighted blanket idea. Our 15 year old on the spectrum loves his weighted blanket, it’s a great way to help him calm down. You’ve probably already tried this but melatonin has helped my son too.

Stacey
Stacey

April 09, 2016

I have literally been going through the same thing for the past 2 weeks. My son’s neuro wanted to take him off of clonidine and try trazadone. Well, my little rascal has a heightened sense of smell and taste. I have spent 2 weeks fighting him to even get part of it in his system….in soda (whatever works), oatmeal, and even mixed into the orea filling. I spent so many nights without any sleep. I am blessed to have 2 older daughters that can allow me a quick nap here and there but it just isn’t the same, Finally, yesterday I said no more and went back to the old meds. He slept for 12 hours. Hallelujah! Though I woke many times to make sure he was alive lol. I had my bed to myself for the first time in forever. My boy likes to curl around my legs and rub on my calf to soothe himself. It’s real funny to be awakened from a deep sleep with a random hand rubbing your foot and leg. It has scared me senseless too many times. He just giggles. Though the past 2 weeks I felt reality slipping away. It doesn’t happen often but man when autism kicks your ass it packs a big punch. You are not alone and after reading your blog I am not either. We were going through it together.

Patricia Holmes
Patricia Holmes

April 08, 2016

I have the restless syndrome too, and the only thing that helped is compression. I am wondering if keeping your son snuggled up in a tight blanket of some sort might help him relax and be able to sleep. He will more than likely just wiggle out of it, but it’s a thought. When you said that he is putting his feet and hands underneath you, at night, maybe that gives him the compression he needs. Perhaps being snug as a bug in a rug is more than just a saying.

Don Dargel
Don Dargel

March 29, 2016

Alison…stay strong. My wife is a care provider for clients lIke your son. I had a conversation with her about Liam and what you are experiencing.

She suggested a quilt with weights on it. Establish a bedtime routine including reading, a quiet prayer, snuggle time, soft backrub. Do this all under the weighted blanket with him. Then when he slips into sleep, you try to slide out while he is sleeping. The weight of the quilt may hold him in sleep and maybe he might stay there.

Keep your chin up. I don’t know him personally but all I’ve seen of him is he looks like a sweet boy.

Jen
Jen

March 28, 2016

I could never understand what it’s like raising a child on the spectrum. I do, however, know the difficulties of raising two girls on my own. The fear never subsides. My prayers and love go out to you. Always remember that you are stronger than you believe. Xo

Stephanie Morgan
Stephanie Morgan

March 28, 2016

Oh lawd, I hear you on the lack of routine. Even the long Easter weekend here (we have four days off, Friday – Monday) is enough to drive our house into chaos. Or even just a regular two day weekend! I’m the only person I know who loves Monday morning.
Our longest holidays are during our summer – from the week before Christmas through all of January. This year I was also spouse-free, as he took a much needed holiday to Japan to recharge his batteries. I’m glad that doesn’t happen every year, so you are a dynamo for getting through that!
I have a to do list every day, and if I could get to the bottom of it, I’d throw a party! Those hours between the kids leaving and coming back just fly. I have to constantly remind myself no one is going to berate me for not getting it all done. Except myself, of course!
The hardest part sometimes is needing the right time and place to vent, because it is human nature that when you hear someone is having troubles, we want to help them fix it. Mostly through advice, and mostly from people with neuro-typical kids who mean well but have no idea what we go through. And unfortunately sometimes people have gotten offended when I’ve tried to let them know that this stuff just doesn’t work on our kids. The normal rules do not apply!
We all need to be more aware of being judgy towards other parents, but especially so when it comes to special needs families. I’m glad you have a place you can vent, and I’ve kinda hijacked it a bit sometimes to vent with you, I hope that you don’t mind. It just nice to have a place to say “I know, right?” All I have really is Facebook, and (as I re-learned this weekend) I have to be careful not to send friends and family into a tailspin of worry.
So I thank you for sharing. It might not be written looking for sympathy, but you do deserve some, or a nice big pat on the back to say “You are doing good. Not just for yourself, but for all the voiceless families in similar situations.”

Nan Vodick-Mapes
Nan Vodick-Mapes

March 28, 2016

Hi, I’m a school friend of Jane Hooker and a special education teacher. You may have already tried this but a weighted blanket has helped some of my autistic students. Also having regular pressure put on them, like rolling a bean bag chair over their bodies or wearing a weighted vest. My son had a brain injury 14 years ago and I can relate to your comments about not sleeping at night. Things have leveled out for him and he is coping well now. Stay strong and take naps when you can.

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