There are so many questions about autism. About autistic children, their behavior, their quirks, and their families. Many people stare and ask themselves questions or give opinions and offer advice.
“What is wrong with that child?”
“That kid needs to be disciplined.”
“Autism is God’s work.”
“Everything will be okay.”
Yes, I am the mother of an autistic child. I am also the mother of a gifted and talented child. Yes, I love my children equally, with everything that I have.
No, I would not trade Carter for anything, but I would choose for him to not have autism. No, I do not think that autism is a gift from god and no I do not like to hear people tell me that god only gives me what he knows I can handle. Please don’t use religion to justify anything to me.
No, I do not like the intense tantrums, the yelling, or the danger of Carter hurting himself. Yes, I would change the lack of communication and the lack of understanding. Yes, I would change the fear and anxiety of going to birthday parties or swimming pools or other crowded places where other kids have a blast.
No, I wouldn’t change Carter. His smile, his love, his personality, his laughter, his heart, his silliness, his sneaky way of “testing the waters.” This is all what makes Carter…well, Carter. Yes, Autism can take a freakin dive right off of a cliff.
Yes, it is true that I have developed more patience with autism. Yes, I have learned to celebrate the littlest events and to praise every jump over a hurdle even if it results in a fall. Yes, I have cried. A lot. A LOT. I sob uncontrollably at times.
Yes, I have smiled and laughed at Carter’s silliness and yes my heart has been warmed by his huge love for us and ours for him. Yes, I have been thankful for Vanessa’s ability to be patient with Carter and accept his quirks (for the most part). I have also appreciated her acts of normalcy- she treats him like any other kid. She doesn’t baby him but she does protect him. They are a great brother and sister combo. Yes, I am thankful for a great support system, but they don’t know what I face. What I struggle with. Who I can turn in to when the facade shatters.
No, Carter doesn’t have a rare disease and he’s not on his deathbed. He doesn’t have any major health problems or issues. No, I don’t want to use other people’s unfortunate situations to feel better about mine or say “it could be worse.” I know it could be worse, but that doesn’t always make it easier.
Yes, I have started to learn new things like how to be more creative in the kitchen to try to give Carter a healthy diet that’s been suggested. No, I don’t always succeed. Yes, it’s frustrating. Yes, I want to take that gluten free pizza and throw it right out of the damn window.
Yes, I look composed and calm on the outside, but it’s just a facade. Underneath that smooth composure is bubbling lava. It ripples from time to time. Ready to blow and create destruction to anything in its path. And then…sadness. Emptiness. Loneliness.
Yes I participate in the battle between old fashioned discipline and a more gentle approach. Yes, I am overprotective and yes I have been told several times that I need to loosen the reins…a lot.
Yes, I lose control. Yes, I get bitter. Yes, I get angry. Yes, I get scared. Yes, I lose my strength. Yes I participate in self loathing and I ask “why?” Yes, I hate myself for not appreciating and focusing on the positive all the time. Yes, I am human. No, I don’t always want to look at the bright side. Yes, I torment myself. I stress and I stress even more. I stress and worry so much that I wear myself out. I make myself sick. Physically, emotionally, mentally.
And then…..something amazing happens.
Carter looks directly at me with those big, wide eyes draped with dark, long, and thick eyelashes. He’s beautiful. He smiles at me as if he knows I’m admiring him. In those warm eyes is a light. It shoots right to my heart. He hugs me. His cheeks are so soft. He buries his face in my neck and holds on tighter. And tighter. It feels good. Like a transfer of energy. Like a message that we’ll be okay. I close my eyes and take it in. A deep breath exits my body and carries away my negativity. Even if it’s gone for a little while I’ll take it. It helps clear my mind. It helps the autism seem unimportant. In these moments I see Carter. And man, I just love this kid. Autism and all.
Yes, it’s exhausting to have someone need you so much. To depend so much on what you’re willing and able to give. Your strength, compassion, motivation, understanding, and patience. To have others need you just adds to the pressure.
Yes, everyone always says “I don’t know how you do it” but I do it not just because I have to. I do it because I want to. It’s what Carter deserves. I’m his mother.
Would you really do it any other way? Would you really not fight through your confusion and exhaustion and bitterness and anger to do anything you could to help your child?