I have never been good at routine. That is an understatement! When I was growing up, my dad did everything by routine. If he was walking into the bathroom in the morning, you knew it was 6:14! It drove me crazy! Maybe I rebelled, but to this day I cannot stand having to be on a schedule for everything.
Who would have figured someone like me would have a child who needed structure and routine so much? But everyone was telling me it would be the most important thing in her life, so I tried my best.
It wasn’t easy, and it never really worked out the way it should have. Rachel had so many seizures that sticking to a routine, especially at bedtime, was almost impossible. I don’t think I had a night’s sleep for eight years. I used to fall asleep on the arm of the couch while her support staff was working with her! And frankly, until we got the EEG under control, she really wasn’t capable of understanding the concept of routine.
As the seizures stopped (for a while), and the behaviors were being better controlled with medication, I kind of abandoned the strict routine altogether. She seemed to be okay, and I just let things roll as they came. I would deal with the behaviors when I had to. As she got older, it never occurred to me that lack of routine would cause any problems, or that having one would help.
In the middle of last school year, we began having major behavioral issues again. I couldn’t figure it out. We had had her in the hospital in October and she hadn’t had a seizure since November, so that shouldn’t be causing it. We worked closely with her psychiatrist and made sure he and the neurologist were working together to get her medication right, so something should be helping.
But she missed so many days of school because I could not get her to sleep, and I just could not get her up and ready in the morning. She is bigger than me, if she doesn’t get ready, she’s not getting ready! By the end of the year she was missing days every week, and I was receiving phone calls from the school about behaviors and the nurse about self-injuring three or four times a week. I was exasperated and exhausted.
Thank goodness summer came, but it got worse. She would never want to sleep at night, and she would nap for hours in the morning/afternoon.
When school started again this year, she was good for one day, only because she was excited. But the same pattern started once again, and by the second day I was begging and yelling for her to get up in the morning. I was reaching my wit’s end!
Then I thought, she doesn’t even put her pajamas on anymore, maybe a strict bedtime routine would help her know what to expect and make things move more smoothly. So I downloaded an alarm clock onto the iPad, and set four alarms for the evening. 6:30 melatonin, 7:30 shower and pajamas, 8:30 medicine, 9:30 bed.
The first two days she actually did what she was supposed to do, with much prompting of course! Today is the third day, and if I wondered if it was actually working I got my answer tonight.
I was 15 minutes late with shower time, and Rachel came out of her room and said, “Mom, it’s called a SHOW-ER!” She was making ME stick to the routine! And she was asleep by 9:30, the designated time! It’s getting a little easier to get her up and moving in the morning as well.
So, I certainly learned my lesson. I didn’t know how much not having a routine was affecting her until I put her on one. I told the hubby that we have to follow through on the weekends as well, I don’t want to take any chances on rocking the boat.
Now that she’s 20, I feel the need to go back over a lot of things that I let slide because I thought she didn’t need them anymore. She won’t “grow out of” her issues, and thankfully I can always keep learning, and I learned my lesson about keeping up with everything she needs to thrive! And I’m thankful to have found everyone on here willing to share experiences and advice, because becoming complacent when your child needs you to be vigilant is not an option!