In my previous post, I mentioned that through this blog series I am attempting to raise awareness and understanding of autism by describing some of my own personal experiences raising my son Ethan. I hope these snapshots challenge you to have a better understanding of individuals with autism and encourage you to embrace members of your family and community who may have this diagnosis.
I’m so exhausted after a long day. At 10pm all I can think about is unwinding so I can sleep. Ethan has a regular sleep schedule, but he needs to take melatonin every night to help him sleep. If my husband and I hear jumping on the bed mixed with Star Wars noises at midnight, then we know we forgot to give him his melatonin. This over the counter sleep aid is what my son’s body requires to get the rest he needs. Before my husband and I made the decision to give him this supplement, our son was averaging four hours of sleep each night. He struggled (loudly) for hours every night to fall sleep. He would dismantle his room and break things in his room unintentionally. He would wake up his brother and make frequent trips to the bathroom to look through the medicine cabinet. To say sleep has been a challenge is an understatement. Other friends whose children have autism have shared that they also experience sleep challenges with their children. Imagine what it’s like for a mother who hasn’t slept through the night from the time her child was born, and now that child is 12. Imagine what’s it’s like to lock your child’s bedroom door from the outside for their own safety because they might wander away from your home in the middle of the night. Even when they’re asleep you can’t completely rest. Through our own struggles in this area, I’ve learned that each family must navigate this issue as best as they can. Empathy, not judgment, is what they need from me. — Matthew 7:1-2
Experiencing new things can be challenging for many people. I myself am not always fond of change. Ethan struggles with this too. He is all about routine. So, when we decide to eat at Island’s instead of Applebee’s, or our plans for the day need to change, we must do our best to prepare him for it. I recently attended a meeting at my pastor’s house with childcare provided at a different home. Because the childcare location was unfamiliar to Ethan, I did what was needed to prepare my son for this. I requested pictures of the home where he would be. I talked to him about where my husband and I would be. I showed him the rooms he would be in, and we talked about what toys were there and that some of the kids there would be different than the ones he always saw on Sunday.
This type of preparation is critical for Ethan. Anytime any element of life changes, I need to show him, talk to him, and role play before that change takes place. These steps help ease some of his anxiety when it comes to new things. — Isaiah 14:24
Ethan has goals targeting his attitude and behavior when he becomes frustrated. Phrases like big deal and little deal, expected and unexpected are used daily to talk about behavior with my son. We try to be proactive to avoid triggering a meltdown. We look up videos and photos online to show Ethan unfamiliar places. We talk about possible things that could happen and what the expected reaction is. This preparation is not for places that might seem scary or situations you think would be challenging, but for restaurants that are in a new city or how to react if the chicken nuggets aren’t as crunchy.
Just reading about this extensive prep might cause you stress. I admit, it’s a lot of work. But I know this intense prep means more to my son than chicken and locations. Routine is what holds him together. It’s what helps him stay on the path that he works so hard every second of every day to follow. When the path suddenly moves from where it was, he wants to run, scream, push. He needs to be kept safe, to be helped, to have someone stay calm for him.
That’s what’s going on when you see him melting down.
He doesn’t understand why something unexpected should change his plan. The environment and situation no longer makes sense to him. He is scared. I make myself look calm as I hold him, trying to prevent him from running. I remind him that this is a small deal and we can say, “That’s a bummer. I need to sit in the car for a minute.” In moments like this I feel many eyes on us, judging our behavior and the situation. Ethan also has meltdowns at church, but I don’t sense eyes filled with judgment in that environment. I’m so blessed to be part of the body that accepts my son for who he is completely. — 1 Samuel 16:7b
Marisa Altamirano is a passionate advocate for children who are uniquely abled. She serves as the director of the special needs ministry at VantagePoint Church. Marisa is a wife and mom to three wonderful boys, one of whom has autism.