Good morning fellow families of wonderful children who happen to have CVI,
This morning’s Mom on Monday is Maya’s mom, Jenny, from Indiana. Jenny and her family have been very active in advocating for early intervention services for children with vision loss. In this post, Jenny takes on a common challenge to parents of children with CVI and ocular forms of visual impairment. Take it away, Jenny!
Image: A girl in glasses gives a peace sign
I have two wonderful daughters, one of whom has CVI, Cortical Visual Impairment. Maya is 7 years old now and in 2nd grade. Her older sister, Zoey, is 8 and in 3rd grade.
Maya was born 2 weeks early on an overcast day in May. Due to being rear ended in a car accident, I was in the ER, extremely pregnant, strapped to a back board, and wearing a C-collar. I was watching the clock when the contractions started. So began my journey in the world of having a “special needs child.”
Maya is a great kid who loves playing with her older sister. Oh, there are times when she is extremely challenging, don’t get me wrong. Right now her passion is butterflies. Maya is as stubborn, determined, caring and sweet child who has never met a stranger. At school she even has an amazing group of friends who look out for her.
I would like to talk about sleep. Kiddos with a vision impairment can be, how can I put this? Sleep challenged? Let’s be honest, it can be a living nightmare for parents when their child can’t sleep. It was for me. She just wouldn’t sleep! Maya was 2 years old at this point and climbing out of her crib when we first started talking about sleep. I was looking particularly haggard at one Developmental Peds appointment when the doctor asked me if Maya was sleeping. They recommended some melatonin and a sleep safe bed. One insurance fight later, a big truck pulled out front with the miracle bed. Let me tell you, it was worth every second of dealing with the insurance company. The solution worked until Maya was 5 years old. One day she discovered how to climb out of that thing. This kid who walks like a drunken sailor can climb like a professional rock climber. She would climb out of that bed, play in her room, and occasionally climb into bed with me, or go into her sister’s room and play.
Ok, I thought, I can deal with this.
Then, one night, she went outside. I woke up to knocking on my bedroom window.
Good lord, it was Maya! Her knees were muddy where she had fallen, and her bare feet were cold. She was bored playing by herself and wanted some company. That was the worst night of my life. My baby could have gotten seriously hurt and I was oblivious. The thought never crossed my mind that she would go outside by herself! I asked her why. She said that she couldn’t sleep and decided to go play outside. Oh, and she brought the family dog with her on her 2 a.m. outdoor adventure. After that, my husband added alarms on Maya’s door, and every other door in the house that could lead to a potentially dangerous situation.
Image: A girl standing in a swing in the backyard
We changed tactics. Instead of managing the situation, how do we make it better? I googled, researched, and talked with my mom. We tried everything from promising I-Pad time if she would stay in bed to taking away toys if she got out. Nothing worked. It felt like I was slowing losing my mind from not sleeping. If she wasn’t sleeping, I wasn’t sleeping. I needed to make sure she was safe.
Maya has trouble getting to sleep and staying asleep. Finally, I talked to experts. I called every doctor and specialist that I could think of who might help. Doctors we hadn’t seen in years! I was drowning and she was too. Due to being persistent and sobbing over the phone to a sympathetic nurse we got an appointment with the sleep clinic and the nearest Children’s Hospital. (Of course, we had to get a referral sent over first.)
We implemented the advice that the sleep clinic recommended and it kind of worked, but not all the time. She was falling asleep at school at this point. She was acting out because she was tired and cranky. That got us bumped up to the sleep psychologist. With their help we finally got a handle on the situation when they added some sleep medication in addition to the melatonin. It helps her sleep through the night and not get up at 4 a.m. every morning. She doesn’t sleep well every night, but most nights. It goes in cycles really.
Here is what we do.
No screen time 2 hours before bed. She is sensitive to blue light. It sends her brain the wrong signals. Instead of the signals – “It’s time to relax” and produce melatonin, she would play on the IPad all night long.
The doctor added an iron supplement because was have a family history of restless leg syndrome. The doctor thinks it’s genetic. Apparently, it can skip a generation and then crop back up again. Awesome! It takes about 3 months to build up to the correct level of iron. Maya tested low on her iron. Hopefully, the supplement will help. In some cases, once that iron level is up to where it needs to be the restless leg goes away. (Fingers crossed!)
We also took out all of her toys and distractions from her room and added a strict bedtime and a bedtime routine.
If your child isn’t sleeping, you are not alone. Don’t wait. Talk with the experts and get some help. It will benefit your whole family and your marriage.
Thank you Jenny and Maya! I read your post with great interest because sleep is a constant challenge for us too. Thanks for sharing!