Whew! I wish I can tell you that by saying “My son has Autism” makes me feel better. Quite honestly, I still struggle with it. After getting the official diagnosis 3 months ago, I am just now getting around to telling people about it without choking up. It’s true what they say. It is like a grieving process. And I’m sure I will get some comments or complaints about that remark. Someone will say to me, “You don’t know what grieving is. Your child is still alive. You don’t know suffering. You haven’t seen your child go through cancer.” And I would have to agree because I don’t have a child dying of cancer. But guess what? You don’t know what it’s like to have a child with Autism either. No one knows what it’s like until you’re in their shoes. And even then, my situation is totally different from the next mother dealing with Autism. There’s a saying that goes like this, “If you’ve met one child with Autism, you’ve met one child with Autism.” I see Facebook friends leaving thoughtful comments to parents about their sick child all the time. Foods are being brought to them so they don’t have to worry about making a meal for the night. Friends are asking other friends to pray for a cancer stricken family or asking for monetary donations in order to help with the bills. You have colleagues asking if there’s anything they can do to help you. You have neighbors showing up in your house to give you comfort and be there for you. You have the support of family and friends. You have a community of people sympathizing with you. And you know what? You deserve every bit of it, and then some.
But ask me how many people have brought me food when I was so exhausted and wasn’t sure if I had the energy to go on for another day. None. Do I have people showing up in my house just to talk to me and see how I’m doing or maybe lend a helping hand? Nope. Instead, I have people staring at me in line at the grocery store because my son is flapping his hands or rolling his head. I have strangers at restaurants giving me the evil eye when my son makes painstakingly loud noises for no apparent reason. I have friends telling me my son is just spoiled and stubborn during his uncontrollable tantrums. They tell me he’s just lazy which is why he doesn’t talk. I’m blamed as a bad mother because I can’t somehow get a handle of my misbehaved child. The worst part is after confiding with friends and family about how difficult it has been and how I’m barely hanging on by a thread, that they can’t even find it in their hearts to say, “I’m on my way friend. I’m here for you.” But I can’t hold that against them. I know why they don’t offer their help or services. My son is a lot of work. I don’t want to burden anyone, so I don’t bother to reach out, not even to family. Instead, I just bottle it all up, even as I watch them observe my son and see the disappointment in their eyes. I know they are judging him and me. I often wonder if they blame me for my son being the way he is. That would explain why none of them, besides my mother, ever bother to visit us. They have no idea what life with Autism is like. So in my effort to come out of the Autism closet, I’d like to give you a little preview into the world of Autism.
I have a child I love so much but cannot say it back to me. I fear for his safety because he doesn’t know what fear is. I fear for the safety of my other child because my son doesn’t understand what playing is. I don’t know when he is in pain because he cannot feel pain and when he does, he cannot utter the words to inform me. I see a little boy trapped in a world only he can understand. He is unaware of others’ emotions and it’s not because he doesn’t care. He starts to stim from excitement and paces back and forth and spins in circles in order to regulate his system. He wakes up in the middle of the night laughing hysterically and only he knows why. He is full of energy that never seems to die down. He has no switch button that tells him he’s tired and it’s time for rest. He never sits still. He cannot tolerate certain food textures but always need to have something in his mouth. He gags at the sight of mashed potatoes. I spend most days driving to and from therapies just to get home in time for the bus to pick him up for school. The “free hours” I have to myself I spend with my daughter to make sure I don’t neglect her. And when or if she naps, I’m usually on the phone with our health insurance company or talking to Regional Center or his pediatrician about lab results or asking my yahoo mommy groups about IEPs and how I can get my son the correct services that would benefit him the most. And then he gets home from school and on to do more therapy. He cannot be left alone. Imagine having to use the bathroom and you have to take your child with you because a minute away is a minute too long. Imagine putting him in his room so you can have a little breather and goes to check up on him five minutes later and see his walls are painted brown, along with the carpet, the bed and everything else in there because he felt the need to play with his poop. And no, it’s not on purpose. It’s his sensory need being met. This is my world. My new world. Much like the same initial shock a parent feels when their told their child has cancer or other debilitating disease. You grieve and then you pick yourself up and learn about this new world that life has thrown at you. And then you fight and fight some more.
We learn to fight because we love our kids. And while there is yet a cure for cancer or Autism, there is hope for recovery. And no, I’m not trying to compare cancer and Autism. That’s like comparing apples and oranges. They are two different things, each with their own sets of challenges. But we both love our children so much that we will go to the ends of the earth and back if that meant saving them. And that’s the commonality you and I have as mommies. Our struggles may not be the same but they are both struggles. Your loss may not be my kind of loss, but it’s still a loss to me. We deal with our challenges differently but we are fighting the same fight. And that’s to give our kids a chance to live happy meaningful long lives. I know I may not understand your world and I don’t expect you to understand mine. Only those who live there truly know. I am not expecting a pity party either. But I could use a little less judgement and more sympathy. And maybe even some kind words every now and then.