To be honest, today I had planned to take a break from being Zoey’s helper at vacation Bible school. I’ve learned over the years that taking breaks when you have a child with Autism is important to maintain your sanity. However, I actually was worried that this abrupt change from mom to aid would result in Zoey acting out. I didn’t want to rock the boat. Plus, I’m enjoying interacting with all our kindergarten crew buddies.
Change. It makes a difference, obviously! Hahaha! Zoey’s wonderful night nurse had been following my plan to keep lights low before bedtime for a while, but suddenly Zoey wasn’t sleeping as well for her. Last night I did a little trouble shooting which revealed that the night nurse had the overhead, bright light on in Zoey’s room right before bed. She told me Zoey seemed to settle down fine after the bright light was switched off. For Zoey, this is similar to playing a video game before bedtime, and disrupts her sleep. So last night was a rough night. Zoey slept fitfully and woke at 4:00 AM. She was banging on the door and needed repetitive guidance by the nurse to get back to bed. Finally after completing my daily Bible study, I prayed for God to help her rest, and she fell back to sleep around 6:00AM. Just one tiny change in the type of lighting in her room resulted in a big change in her sleep cycles.
Zoey’s rough night of sleep resulted in me having to change her morning routine! This is a catastrophic event in the life of a child with Autism. To maximize her sleep, I woke her up fifteen minutes before it was time to go. She was expecting her usual routine ,and when I changed it up, she was not enthusiastic. She was fussing a bit as I pulled her from the car in the church parking lot. I said, “Zoey, guess what?! I know that I changed your morning routine. You went to the bathroom, dressed before having breakfast, and ate breakfast in the car.” She signed and aggressive version of “different”. I replied, “Today’s VSB theme is when life changes, God is good. Look at that. You’ve already experienced a change today by doing things out of order, but God is still good.” We then practiced signing, “When life changes, God is good.” She stopped fussing and we had a pretty amazing day! Absolutely no meltdowns! She had only a few minor complaints where she laid down on the floor and rolled around in mild protest.
The highlight of my day today was when the VBS volunteer on stage lead the entire auditorium in prayer. The kids were to fill in the blank with the name of a person who needs to know that when life changes, God is good. The kids were a bit confused and didn’t shout out names in the middle of the prayer as they should, but actually after. I heard, from across the auditorium, my son’s voice shouting, “Zoey!” I replied, “Yes!” He beamed at me and we air high-fived! I love that my son realized that Zoey’s life is continually changed in small and big ways and is actively praying for Zoey to know that God is still with her. God’s faithful love for us does endure forever.
“Give thanks to the Lord, for he is good! His faithful love endures forever.” Psalm 106:1
This year Zoey accumulated another genetic related diagnosis. Zoey has Non Classical Congenital Adrenal Hyperplasia. This recessive genetic mutation causes her to not make cortisol, a natural anti-inflammatory hormone, efficiently. Instead she makes too many androgens. This caused her to have early signs of puberty, excessive, male like hair growth, and aggressive behaviors. This condition could stunt her growth further (she already has short stature from her two other genetic syndromes). She has been extremely fatigued from how little cortisol she can make at baseline due to these mutations. Luckily, God created the inquisitive human mind. Doctors and researchers have learned how to treat this condition with oral and inject-able steroids. Zoey is feeling much better after only two weeks of therapy! She is even hugging friends again. It’s been an entire year since she felt like hugging anyone.
Looking back on today, I think it would have been fine to have Zoey’s aid attend VBS in my place. God is so very good that this small change wouldn’t have made a difference in Zoey’s day. I would just put my hands together and pray for these life changes to be under God’s control, just like this morning when praying for her to fall back to sleep after a change in her routine caused a problem. I’d add to that prayer how thankful I am for his goodness, his enduring love, and all that he does daily to sustain Zoey and make changes in life so much easier on her. When Life Changes, God is Good!