You’ve heard parents of Autistic children say that they “mourn” the son/daughter that that they thought they were going to have. There have been a lot of people, outside and inside the Autistic community, that have attacked these people for saying such a thing. But let me tell you; EVERY SINGLE PARENT that has a child with an overabundance of awesomeness (otherwise known as special needs) has mourned the passing of their child, or what they thought their child was going to be. It may sound selfish from the outside, but take a look at it from our point of view.
You find out you are pregnant, you tell your significant other, and you embrace. As the months go by; you eat healthy, walk, read to your belly, and decorate a nursery. When your baby arrives; you are both elated and astonished at how something so small could be so beautiful. You know parenting will be hard, but you look forward to it. As the nights go on, you remind yourself that the baby will eventually sleep through the night, you just have to make it a few more weeks as a zombie. Then the baby starts doing other baby things, or not, depending on the level of spectrum they are on. You start to notice that they aren’t crawling, they aren’t walking, they may or may not be talking. But there’s little to no eye contact and hugs make them scream. People tell you it is a phase, so you continue on. Then the cupboard slamming begins, you realize there is still no language, playing with them is difficult, hugging still makes them scream, and they fidget a lot. You start to wonder if maybe it isn’t a phase. But you hope, what you live for, is the belief that everything will be ok.
You see, up until this point, you had seen your child’s future. You saw them going to kindergarten on their first day. You saw them losing their first tooth. You saw them crying because of the occasional bully, but saw them surrounded by friends. You saw dances, boyfriends/girlfriends, you saw them going off to college, getting married, and eventually having children of their own. You saw all of these things, and those thoughts are what kept you from losing your mind as the cupboard door brakes from the slamming, as they scream and tug at their shirt tag, as they walk away from you without looking because they can’t hear you. You dream of them happy as you walk along the store, pushing them screaming in the cart. You cry as you hug them and tell yourself that someday they will reciprocate that hug. Someday, they will say “Mommy, I love you.” But you notice the signs aren’t going away. So you tell the doctor and they send you to a psychologist that confirms your fears; “Your child is on the spectrum.”
We cry. We cry right there and then. We cry on the way home and all through the night. Because now we know that all we had hoped for, all that we had dreamed of, is gone. Everything that we had been holding onto, everything that kept us going…is gone. You may NEVER hear your child speak a single word; and so you cry for those words. You cry for the simplistic phrase that every “normal” mother hears, but that you will not. You may never get a reciprocated hug, so you cry for those hugs. You cry for the cuddles on the couch on a cold day. You cry for the cuddles that would have happened after boo boos. You know the child will be bullied mercilessly; so you cry for their emotions, their sanity, and their happiness. You cry because you know you will be powerless and not even present at school when it happens. You cry because you don’t know if anyone will ever love them (like you do) for who they are, because now they are labelled as “special.” You cry because they may never know the physical love of a mate, or the bond that comes with one. You don’t know if they will ever have the friends that are so crucial to human development. You cry because their life is about to be excruciatingly difficult. You know all of this, because you do not have Autism, and you have lived a “normal” life and you have seen how “normal” people treat those outside the box. You know how hard “normal” can be and you have seen how far worse it is to be labelled “special needs.”
THAT is why we mourn. Not because we feel sorry for ourselves, not because we feel like they are a burden. We don’t cry because we feel like we can never be happy with them or any other bull crap like that. We cry for them. We cry for us. We cry for the child we dreamed we would have and the life they would have had. We mourn the passing of that happy child because we truthfully have no idea what to expect anymore. We are scared. We are uncertain. We don’t know if they will ever talk, we don’t know if they will ever cuddle or even touch us without screaming. We don’t know if they will be able to live on their own someday or not. We don’t know if we will have to take them out of school for bullying, or home school them because of it. We don’t know if they will ever be able to move out, get a job, find a lover, or have kids. We don’t know what kinds of therapy they will need or how they will react to it. We don’t know if we will be able to hold jobs or have to stay home. We literally know nothing about the future. We mourn the simplicity that is a “normal” life. We mourn all that we had held onto to get us through the day. The happy thoughts of “just a little longer,” are gone.
By the time we realize there is something “wrong”, we have already had a taste of the Autistic life. But it gets harder. There are so many challenges that people don’t even realize. So when we say we mourn for the life we thought we were going to have; don’t hate us or belittle us. Because you don’t know the pain we are going through and will continue to go through for the rest of our lives. And people who are Autistic will say that they parent just fine or they aren’t a burden or whatever. But you don’t see how much easier and happier your life could have been. We, the parents, know. Because we experienced the “normal” life. We aren’t mad at you, we don’t regret you. We love you with all that we are. We are simply sad that you will ever have to go through any sorrow, especially those we know you will and have gone through so far. We are sad because we don’t want to ever see our babies in any pain, and yet they will be. It’s a pain we cannot stop. It’s a pain that is lonely and isolated because they are stuck inside their own head, with no escape. We cannot venture there, we cannot rescue them. We are parents on the outside of our children’s lives; looking in, screaming, trying desperately to reach them. But we can’t.
So the next time you go to judge us, remember that you and your child share this world; whereas we are strangers on the outside of our child’s life. Where you can talk, hug, and chat together; we can only talk to them, watch them, and hope they hear us. Whereas your child can tell you that they love you; we can only hope our child knows that we love them and that they feel it too.