Our day starts with having to get Ethan up and out of bed. Hopefully he’s in a good mood; that way, it won't be quite so hard to get ready for school. Next, we have to continue to prompt him to brush his teeth, not his favorite thing to do as he has sensory issues. This process takes over an hour on a good day.
He goes off to school where he may or may not participate. Ethan had to change schools this year twice to finally get the services he needed. He comes home and struggles to discuss his day at school. Thankfully we get a daily report from his teachers.
We try to get Ethan to help with dinner, things like setting the table and helping prepare some food. This usually ends up in a meltdown where Ethan runs to his bedroom and grabs his red blanket (it’s one of the few things that pacifies him). Once he calms down, he might come and eat dinner with us—or he will wait until we are done.
Then the real battle begins after dinner: the shower. This is the worst part of our day. Ethan cannot handle the sensory issues. It kills us that something so simple can cause him such anxiety. It takes us about two hours to get Ethan in the shower and cleaned up.
Then it's off to bed, one of my favorite times. Ethan still asks to be tucked in. This is when he tells me about the triumphs of his day. It’s also when he finally says “I love you.”
Although he can difficult, our son is the best thing that could have happened to us. He has taught us how to be patient and kind, and not be judgmental. He’s taught us that there is always another way to look at the world. He does not see the shades of gray that we all see; his world is very black and white. It has changed the way I think.
When you can learn as much as we have from a child, it’s an amazing thing. And we are nowhere close to finished.
By Heather Davis, mom of Ethan, 11