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.
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