I must admit, having five kids and three with Autism, puts me into a group that few share. Even in the Autism community I am regarded as an anomaly. Sometimes my friends ask me,"how do you do it?" the truth is, that I don't know anything else. We all deal with the cards that we are dealt. I can only imagine that everyone else has their fair share of trials and tribulations and somehow, some way, we all manage to get through it. The only thing that really differs is the need for therapy, alcohol, or drugs during or after the journey. Why, yes, I do have glaucoma.
I hear on a daily basis, "I couldn't imagine having what you have. I just have two and they're neuro-typical. I couldn't do it." Well, the truth is, you haven't had to. If you did have to, you would. You would dig down deep, get yourself under control and determine what you needed to do to get through that situation. Ask any parent with an autistic child, how they manage and most of them will say, "barely". Many of us feel that we are always one step from the abyss. If we can keep our kids from melting, chewing, fighting, regressing in school or with behaviors, then we are keeping our heads barely above water.
Any parent of a child with disabilities is in a constant state of emergency. They are in stand-by mode just waiting for something to happen. I noticed that most people with neuro-typical kids don't live that way.
When we moved to MD, we had birthday parties for #2 and #3, with September birthdays. #2 was in 1st grade and #3 was in a preschool disabled class. We invited #2's typical class for a backyard party. I watched 95% of the parents unplug from their kids. They let them run wild and there was little accountability for their behavior. I had to yell at one kid who tried to climb on my roof and his dad was standing 10 feet away ignoring him.
#3's class party was the complete opposite from the neuro-typical parents who let their kids trash my house the week before. All the kids had disabilities and every parent was perched watching and waiting for them to misbehave, do something inappropriate, or melt in some way. They were like me, ready to take the time to intervene and teach their child when necessary. I had to assure the parents that they could relax a bit. Birthday parties and beer, the perfect pairing.
I wondered why most of the neuro-typical parents unplugged but the parents of children with disabilities were acutely plugged in? Maybe it was a combination of overconfidence and denial of the neuro-typical parents. They felt that their kid could not possibly choose to climb on someone's roof or be rude to someone else. And of course, they made good choices.
As parents of a child with disabilities, we know that our child is going to have a rough time fitting in society. They are always going to be judged more harshly than their typical peers, so we have to teach them how to behave. Our kids may not instinctively know what is right or wrong or how to interact with others, so we spend our time correcting and educating them, because we OWN it. We try to teach them the subtle nuances that exist in human interaction and we are extremely sensitive to "the looks", from judging people. We OWN the condition, we OWN their disabilities and we feel that it is our job to prepare them for adulthood and how to manage life independently, because it IS our job. We don't have the luxury that many neuro-typical parents have that their kid will get to adulthood in spite of their parenting ability. The reason our kids improve is because we fight for them, we have our finger on the pulse of their education, their therapy, their social skills, their diets and their overall health. Some people call that a "helicopter parent", but we call it necessary.
Is our job as parents of children with disabilities harder than the neuro-typical parents? Well , that is subjective isn't it? Many parents of children with disabilities also have neuro-typical children in the mix as well. And, now that we have have the twins, we are also in that category. Having children with disabilities makes you more sensitive, aware and patient and that transcends to all the children. What makes it harder, is that you always have to be plugged in and aware all the time. You have to capitalize on opportunities to teach your kid to be autonomous in the friendliest environments possible, which is not always easy to find. The judging eyes are everywhere and unless they have a shirt that says, "I have Autism" most people will mistake the kid, who looks "normal", as the kid who is misbehaving and the product of bad parenting.
Maybe having three children with different manifestations of Autism; Autism, Asperger's & PDD/NOS, which I call my Autism variety pack, is a bit more challenging than having just one on the spectrum. I have to keep track of three different sets of triggers, therapies, needs, and be ready to intervene at all times. This is why I don't like taking them all out somewhere, in fear I will lose control of a situation. There is no such thing as down-time when I am out in public with my kids. In addition to managing the Autism, I have the fun that comes with managing my wacky pair of four year old girls.
So how do I do it? It is the only thing I know. I wake up each day and hope for the best. I know things could always be worse and I could run out of vodka. That would be way worse. Plus, I don't have to babysit any of those wacky kids from those clueless neuro-typical parents. "No roof for you", said the soup nazi.