A Puzzling Disorder
In honor of World Autism Day, I am re-posting the speech I gave last May as key note speaker at "A Puzzling Disorder" fashion show/fund raiser. This show was put together by my close friend and fellow mom of a child with Autism. Photo of me and Nikki Harris, founder of HGE Designs.
My name is Shari. I am the mother of five children, three of whom are on the autistic spectrum. Yea, let me repeat that, three of my five children have autism. Usually when I meet people and they learn that I have five children, their heads jerk back in surprise. Maybe its because I look so amazing...and when they learn that my three boys are autistic, their heads jerk back again and sometimes the questions come. "Is it genetic? How does it happen? Is it a Jersey thing." (yes, I was asked that) but the truth is, that no one knows how you get it. No one has been able to figure out the cause, and what we know right now is that there is no cure.
As a parent of a new baby, we naturally are aware of the developmental guidelines and milestones that they are supposed to reach. And when we notice that they are not reaching them, we start to worry. Many of us have had pediatricians that say "just wait, the words will come. And if they don't in 6 months, we'll do something then." So you go home and wait. And when our child is still not talking we finally get the referral to take them for a hearing test and then later to the neuro- developmental pediatrician. (A word that I could not say for months without having to try a few times.)
From the moment the diagnosis is made, every parent goes through a period of re-evaluation. It is when you realize that the fantasies you had, about the type of child you were going to have, were not going to happen. And for most, even reaching a parallel to our own childhoods was something that would be out of reach. And so, as a parent you go on the road to understanding everything you can and you question everything, including the fish you ate during pregnancy, the immunizations, the environment. And when you realize there are lots of theories, but no answers, you begin to formulate what your child needs and then figure out how to get it. You seek out the experts and learn all the lingo. You learn all the different types of therapies, the scope and modalities and learn to speak in acronyms. The BCA is doing ABA, working with the OT for sensory integration. What? This is certainly a language I didn't speak even after my first son was diagnosed. But 7 years later I speak it quite well.
And then you learn about how the public school system deals with your child. For many of us, we all enroll our kids in school with the belief that the school will do what is best for our children. And then, we realize that once again, we had to reassess a fantasy. We realize at that moment, that WE are the experts on our children. And as much as we want the schools to sweep in and make it OK, with all the therapies they need,because of course they HAVE to know more that you, it just doesn't happen. We, as parents are the biggest and loudest advocates for our children. It is the mighty parent that fights the noble fight to assure the developmental needs of our children are met. Cost is the bottom line for public schools. And most times the needs of your child are placed way below the districts bottom line.
Many of my friends and family ask me how I do it. How do I deal with 3 autistic kids. Well, they are each different and have unique and individual skill sets and personalities. The best way to paint this picture for you is to tell you about a note I posted on Facebook in December where I wrote how each of my children answered the same question.
"Who do you want to give cookies to?"
#3, (PDD/NOS); He named the five people he sees and has interaction with regularly: The teacher, teacher's assistant,the afternoon assistant who helps out when the morning assistant is out, the Librarian, and our neighbor, Becky who he adores.
#1 (Autism): I ask him this question, he voices a loud "ahhh" and runs back to the TV. I grab his face and ask him again and he runs away again, "ahhh". Finally, I ask him loudly while holding his face and trying to get eye contact and he names his two teachers. I then ask him, "what about Marco?" (his aide), "yea" he responds and runs away, "ahhhh"
#2 (Asperger's) He gets a pen and paper and makes a list of every teacher, custodian, secretary and parent helper in the school. There are close to 30 people on the list. "OK, Julian. Great list", I say, "but, you should only give to the people that you see and those you want show appreciation to." "OK mom" he answers. He helped assemble the packages and gave out 17 containers of cookies. He loved walking around the school handing them out.
Each child is different and each requires their own schedule and behavior plan. Every day it feels like someone handed me a Rubik's cube, or three, all mixed up and my job is to solve it everyday. Some days it is easy and some days it takes all day or never gets solved. This is why many have referred to autism as a puzzling disorder. Each child is different and complex. Each requires an individual and unique plan for understanding and helping. Unlike standard diseases such as kidney disease or Lyme disease, there is no definitive cause and no standard treatment. The manifestation of this disorder is individual. and many times it can piggyback with another disorder such as ADD, ADHD, Epilepsy, Anxiety disorder, OCD, and food allergies.
Being a parent of autistic children means you have to teach them many things that come innately to most and hope they are getting it. (I remember when we moved here from New Jersey 18 months ago (like you couldn't tell) we met some of the neighborhood kids and one asked me, “Does Isaac has a brain disease?” It caught me off guard, but I thought about it a second and then I answered him. "Yes. He does. And what that means is that he has trouble doing things that are easy for you and me. He really does want to talk to you and play with you and play with you, but he doesn't really know how and we have to help him. Do you think you can do that?” He said “yes” and I knew he felt better because he now understood and that he could help.
Being a parent with autistic kids means that you talk and repeat things a lot. Since they have a difficulty with modulating their volume, I am constantly telling them "indoor voice". (which gets me nowhere). It means you have to grab your kids head sometimes or speak robot to get any type of eye contact. It means having to say their names several times using several different pitches and volumes to get them to respond. It means telling them EVERY time, several times, to wash their hands or do most daily tasks. BUT, it also,means taking a moment to appreciate the one time in days that they have a little conversation with you which includes answering questions and giving eye contact.
It means you have to take everything that is abstract like interpersonal communication and make it tangible. I had to explain to my Aspergers kid that just because you think someone's shirt is ugly, that you don't have to say it. I tell them, "words can hurt just like fists."I had to explain the different reasons people yell: "surprise, fear, frustration and anger". And I have to explain which emotion I'm feeling while I am yelling at them. (talk about having self control) and it also means, that you take nothing for granted. Every little step is a victory. Each accomplishment acknowledged.
And then you have to teach them social rules, another very abstract concept. What is appropriate and inappropriate to say, and when you can say it is very challenging. I made a chart describing the things you need to say and not say to make friends. I remember I was getting feedback from school that one of the boys was giving his penis some extra air time during school and I had to give them the talk. I'm in the car with all three and say "ok boys, when does the penis come out? Only in the bathroom and in college. Got it?" And then you repeat it a bunch of times and make them say it back and hopefully it sinks in.
I had to teach the boys "not all dogs are friendly and not all people are nice". The first time a person was unappreciative of my Asperger's kids questions and walked away from him, Julian asked me why the man didn't want to talk to him, he was confused.
So not only do we have to be able to provide a balance within our families, we have to deal with the people that don't get our plights or our kids issues. The looks we get from people when our kids throw themselves down in the doorway of a store they have never been to, because they have anxiety of new places. The odd comments from strangers and sometimes family members who mistake behavior issues with a lack of discipline. And the overall lack of compassion and support that comes from not understanding the complexity of the disorder. One year for the holidays, my brother and his wife gave my kids, monopoly. Yea. Monopoly, to my ADHD, can't sit for 5 minutes, autistic children. Some people just don't get it.
And then we realize that some of our friends and family stop calling or visiting. They are not comfortable and their kids don't want to play with ours anymore because they are weird. So, on top of it all, some of us get abandoned in our time of need. Awesome.
So, you seek out people who understand. You focus of the positive stuff and count our blessings. And you find humor in the quirks and intricacies that define them. Yea, your kids may be good at sports but mine knows the gross domestic product of Chile. So there. Your kid might be popular, but my kid can crack passwords. If my 9 year old sees you enter a password once, he will remember it forever. He figured out on his own how to get around parental controls. He even figured out that he can keep windows open on the computer, the ones he isn't allow on, like you-tube and keeps the ones he can be on infront so he can flip back when I walk into the room. He also can sing back songs he heard once) My 7 year old has an amazing memory and can tell you every present he got for each birthday. He memorizes Wikipedia and the CIA Facebook. And my five year old will take any iPhone, itouch and iPad and rearrange all the apps into folders and the he will scour iTunes for new apps. My 9 year old is a food poacher. At the pool he will walk up to anyone eating pizza and say, “Pizza. I love pizza. Can I have a piece?” People usually don't say “no” to his sweet little face. So he has learned to work it.
In the autism community, there are two types of parents, the type that put their head in the sand and hope that their child gets what they need and then there are the fighters. The ones that own the fact that although they can't cure their children, they can fight to make their lives just a little better. So we look at why we are here this evening. All because one of our warrior tribe wanted to make things better not only for her child but for all involved.
It is my great privilege to introduce to you this evening , a great friend, incredible designer, and most of all, an amazing mom. It is because of her talent , tenacity and devotion to her children that we are all here this evening. Please stand and let's welcome Nikki Harris to the stage.
For more information on HGE Designs, please visit: http://www.hgedesigns.com/ or