Let’s continue this blog series by looking at a few more areas of life that are influenced by my wonderful son, Ethan, and his unique abilities and struggles.
LEAVING THE GROUP WITHOUT LEAVING THE GROUP
What does this mean? It’s the best way I know to describe what it looks like when Ethan is “imagining.” Think about when you imagine you are on stage performing the song you hear on the radio, or when you are imagining the interaction you just had with someone and all the things you should have said. Ethan has a huge imagination, and he doesn’t keep it hidden. We could be waiting in a line somewhere and Ethan will “leave the group without leaving the group.” He makes different noises and repetitive movements with his hands, sometimes even scripting (repeating lines he’s memorized from movies). If I ask him what he’s doing he usually says, “I playing.”
One of the most challenging components of this is how it makes his older brother feel. I can watch Ethan do this in public and think, He’s so happy right now. Watching Ethan “imagine” is much harder on his brother. He’s at the age where he feels like everyone is looking at him. He asks me why Ethan does this and whispers to him to stop. It makes me so sad to see that divide between them. I empathize with my older son because I know he is young and trying to feel comfortable in his own skin. He wishes he had a brother with whom he could connect more. I also understand that Ethan wants the same connection with his brother. This breaks my heart. I don’t know the right answer or solution, but I believe it involves acceptance, love and understanding. — Romans 15:7
Ethan’s lack of language at the age of two was our first red flag. Ethan was almost four years old before he responded to the question, “what’s your name?” We’ve been working on Ethan’s speech for more than six years. In the beginning, he struggled to communicate his basic needs and vocabulary came slowly for him. He continues to struggle with speaking in sentences. When he does say a full sentence, it is not unusual to have words missing or out of order. As he struggles, we struggle with him. I desire to know what my son is thinking and feeling. Does he feel like he belongs at school? What is he thinking when he gets so sad that he needs to take a break in his room to cry? I wish he could tell me what happened so that I could say something to comfort him. I would love for others to know that he needs processing time after they ask him a question. He needs a moment to sort out his thoughts. If you need to repeat the question don’t change the wording, if the wording changes he would need to process everything all over again. I wonder how language is organized in his head. Is he sorting through pictures that represent every word you used before he can decide on the response he should give? I know he may not show much emotion on the outside, but he understands when someone is excluding him. — 1 John 3:20
One of the hardest questions I’m asked to answer on assessment forms for Ethan is, “Does he have friends?” He doesn’t mention kids in his class by name. There isn’t a list of kids that Ethan asks to invite to his birthday, truthfully there isn’t even one. There are moments that he will share information with me about a video game he likes. “This hard level.” “That one” (as he looks at me and points to something he wants me to notice. Waiting for me to tell him what I see). As I mentioned before, talking is hard for Ethan and requires a tremendous amount of work from him. I can see it in his eyes when he is thinking about his responses. This is a huge barrier when it comes to making friends. I want my son to have friends. I want other boys his age to enjoy spending time hanging out with him.
We work on Ethan’s social skills everywhere we go. Everything from personal space to how our actions cause reactions in others is something that Ethan must practice and work on—over and over. I pray that other kids will take the time to interact and include my son. He is capable of learning so much from kids his age, and I know they can learn much from Ethan as well. — Mark 2:3-4
As I’ve shared about my son Ethan, my family, and how autism impacts our life together, I hope you’ve gained greater understanding of uniquely gifted individuals who are diagnosed with this spectrum disorder. My ultimate hope is that your heart will be opened to loving, accepting, and celebrating these wonderful people, just as God created them.
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.