My Special Needs Truths
To the people that live outside of the special needs world. Here are my truths:
Parenting is hard. So is special needs parenting. I’m allowed to say that both are hard at times.
Talking about the realities of severe autism is not negative. It’s not pretty and wrapped up in a bow. It’s very real and raw. And until you live it, please be kind to those who do.
I will be raising a child who needs lifelong care until the day I die. While other children leave the nest at 18, mine will not. I will bathe him, feed him, and hold his hand when I am 80 and he is 50. And there is a weight in that.
I don’t understand why some families have disability and some do not. Why was our family chosen when I did everything right while pregnant. At times I feel like we must have done something wrong.
I lost my relationship with God for a long time. I got it back, but it took years.
Severe autism is not just being ‘quirky or weird’. It is a life long disability that affects every aspect of a person’s life. And the families. But I will never stop pushing my son to be better. He will have no limits.
I am tired of being judged for saying this is hard. I am tired of the parent shaming in general. But especially from other mothers.
I don’t think of this as a gift. Not all the time anyways. Watching my son self injure, lash out, scream and struggle makes me wonder why, why him. I would take this all away in a second if I could. I would make his life easier and so he never has to struggle.
I’m afraid of dying and leaving my son alone. I wonder if he will understand that I am dead. I wonder if he will be able to come to my funeral. And I wonder if anyone will go to his.
I worry nonstop about people hurting him, taking advantage of him, sexually abusing him, teasing him. The fear keeps me awake at night. It haunts my dreams. Losing him. Drowning. You name it. He is a very vulnerable person.
Sometimes I am sad. Just plain old sad. You can be 100% completely in acceptance and still get sad sometimes. I wish my son talked, and played with his brother’s and went to school. I wish he could enjoy a vacation and going to the park. But he can’t.
You don’t know what happens in people’s homes. So don’t judge. There are parents and siblings being abused, diffusing situations, and walking on eggshells. And they do it all willingly and with love. If they open up to you…don’t tear them down.
I am tired of defending my choices to people I wouldn’t even take advice from.
Until you can tell me what caused this, definitively, do not question my fear. I am allowed to be scared of pesticides, water, heavy metals, genetics, vaccines, you name it. I am allowed to ask questions. That is my right as a mother looking at lifelong care.
I gave up hope. But not in the way you think. I gave up hoping for his autism to go away. And in doing that, I was able to accept our unique reality.
I am scared all of the time. Every second of every single day. And every morning I make a conscious decision to see the joy. Because if I don’t, the fear will consume me.
Medications saved my son’s life and gave him a chance at a future. I have been so afraid to say that. I thought that made me a bad mom. I was wrong.
Sometimes I dream about a day without autism. And I don’t mean a day without my son. I mean a day where he can enjoy his life without anxiety and fear. A day where he can simply be happy.
Our life is not sad. Not at all. Our home is filled with laughter and joy and happiness.
I love my son more than I can even put into words. He is everything and more. My buddy. He is part of me. I will advocate and push and fight for my son until the day I die.
My son will change the world. He will shatter the negative stigmas around severe autism and show us his unique beauty. He is absolutely amazing.
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