“I’m not broken. Just because you can’t understand me does not mean I’m not communicating”
Last year when I came home, my favorite niece (yes, she is the only one) asked to take Mateo to meet her friends. She wanted to introduce him since she had been trying to explain to them about him and autism. But some couldn’t understand or grasp the term ‘non-verbal’. To help explain that term, I thought I’d take you through the journey of our quest for spoken language.
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“Once you learn to appreciate the small victories there is no need for a finish line.”
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The symbol for Autism is the Puzzle Piece. There’s some debate about changing it, but to be to honest, the puzzle piece always seemed perfect to me. My son isn’t missing a piece. Hell no! But there are just so many unanswered questions about Autism - exact causes, why one therapy works for one child but not for another, how best to manage behaviors, etc. There are so many unanswered questions - which for me, makes Autism one big puzzle piece. Also, just about every day I learn something new about my son. He’s not a puzzle; he’s just THAT impressive that it’s taking me longer to truly understand him. I mean, he is my son after all.
I can tell you one thing that we do know- we know each other. Autism Moms and Dads - we can recognize the tired eyes, the inability to truly relax, the amazingness of every small accomplishment, the wonder in our gaze as we look at our kiddos. We can see that in each other.
I don’t like talking about religion and spirituality. It’s personal. I feel people should try to be good and do good. Simple as that. With that said, however, I was raised in Belize. I was raised Catholic. And not just go to church on Sunday kind of Catholic, but the help decorate church Catholic; Mom singing in Choir and having prayer meetings at our house Catholic. The kind of Catholic where when I went to confess and I knelt behind the screen to list my 50 million sins, I stopped to take a breath and Father Wright ( he was a Father then) said, “go ahead, Christy”. Cause yup! They all knew me. Honestly, many Mercy nuns had a hand in helping to raise me. (Somehow I don’t think this is something they would brag about today).
Seriously, though, I don’t really talk about religion or my beliefs because I have a complicated relationship with God that, yes, in many ways, is linked to Autism. Please don’t go post in the comments that it’s a blessing from God or God doesn’t give you more than you can handle or that Mateo is a child of God or that God knew what he was doing etc, etc. I appreciate the support and yes, my son IS a blessing and he’s loved. But on days when I watch him struggle, when he’s acting out because he can’t tell me he doesn’t feel good or that his ear hurts or that he has a headache, on difficult days like that, I can’t find comfort in those words. My son is non-verbal and severely autistic. He still struggles to get dressed. He works ten, sometimes 100 times as hard to learn something basic that a neurotypical 5-year-old might learn in minutes. He has done more therapy hours in his short lifetime than a high school graduate has spent in school and yet we are still working on colors and shapes. He has so many sensory issues that he struggles to chew and swallow certain textures. He doesn’t feel his body like we do. Sounds can be overwhelming and sight? Well, I don’t know, because can’t tell me how his sight is affected. Yet every day he gets up with a smile on his face and has to try to work with a world that barely understands him. He is wonderful, my son. And many days I’m in awe of what he does or how he lives his life. So yes, I have a rocky relationship with God.
