“Once in a while get shown the light in the strangest places if you look at it right” (The Grateful Dead).
In the movie Hook, the lost boys live in a tree of many wonders. Within the tree there are places: covered in snow, Skateboard Park, basketball court, imagining your food into existence, and vines to swing on. Every child that lives there can live out whatever kind of play that he wishes and if that was not enough there are: pirates, mermaids, and Native Americans that also live in this world. This reminds us that childhood is meant to be full of wonder and have dashes of whimsical thoughts. People often try to get people on spectrum to feel included through many different kinds of valuable therapies and programs. Most if not all these programs end when the child is 21 years old. For many people with ASD we are left dumbfounded on what to do next because we never imagined life afterward specialized schooling. Yes, we are given plenty of warning by the professionals in these programs and by our parents, but it still feels like we have forgotten how to fly once we turn 21. How do we prevent this? As I have been stating throughout all these blogs, it is through the power of play. It is the earliest form of the oldest and noblest pursuits of being human answering the age old question, who am I? I will take this one step further in saying that people who play with us are the ones who truly get who we really are. People on spectrum often believe that these programs and therapies often define who we are. We often believe other/older people know better than us because they know something we do not. Please mom and dad do not let us believe that Autism defines us, but instead let it be done through the wonderment that is life.
What is wonderment? I believe it is the awing feeling of being included in a group of people. That out of the billions of people on this planet, I get to be in a moment with another person or group people is something wonderful. For many adults and other children it seems to be a given that they can connect with other people on command. However, for many people on the spectrum this feeling does not always come consciously or subconsciously when we tell it to. How do we learn this command? It comes from what our parents teach us, which is what exactly? To teach us how to not only be happy, but be grateful for everything that happens to us. Please also teach us to fly like Peter and his happy thoughts; when our heads are spinning. I am talking about the moments when we can only think of the details of what went wrong when we tried connect with another person. If parents want us to feel wonderment then please give ASD children experiences that show them that people value who they are. Instead of just doing exercises that just work on what we are not, traditional learners. God did not give us social awareness and cues for a reason, which is so that we can experience the world in a different way. When it comes to connecting others we should be falling in love with the details of relationships rather than them becoming these huge stressers. Teach us that such details of connecting with others are full of wonderment rather than let them define what we cannot do right now. In return for your tireless efforts as our parents we will teach you many things about us. No matter where we fall on the spectrum, I believe that play is the key to unlocking self-advocacy and self-expression.
Even those of us who cannot speak can have experiences that bring us (and our parents) wonderment and the utmost joy. Whether it be watching the same video over and over or the power of living out a daily routine this is something special. These ASD individuals are living examples for us all to enjoy the simple things in life like: the food we eat, the clothes we wear, and everything that the body does for us. Remember the sheer joy your child and you felt when he learned to use the toilet or feed himself. For many families this is an expected rite of passage of raising a child, but for your ASD family this is an incredible feat! Many parents today often struggle with the balance of work and family because they believe that there is not enough money thus they slave away for many hours to fill this void. It is the deal parents make so that they can enjoy their families when they retire. What if they are wrong to do so? “I hated the deal, but I'm sorry you feel so badly about it. Your children love you, they want to play with you. How long do you think that lasts? Soon Jack may not even want you to come to his games. We have a few special years with our children, when they're the ones that want us around. After that you're going to be running after them for a bit of attention. It's so fast Peter. It's a few years, and it's over. And you are not being careful. And you are missing it” (Hook 1991). We, the parents, cannot pay for these special moments with our children. Your non-verbal and so called “low functioning” child are a powerful reminder of that. What I suggesting to you here is that maybe your child is onto something bigger then even you know. So parents do not wish that these daily moments to be over because while they are hard, you still learn to embrace them!
“You know you're not really Peter Pan, don't you? This is only a dream. When you wake up, you'll just be Peter Banning - a cold, selfish man who drinks too much, is obsessed with success, and runs and hides from his wife and children” (Hook 1991)! Everyone experiences parenthood differently and it alters how we perceive success and how we reap the fruits of our labor. Yes, I know that your children need their programs and therapies, which cost an arm and leg. Yes, I know your partner and you have not had the normal date night that most parents get because you can’t get a babysitter who can handle your child’s needs. Yes, I agree that all of this is very unfair, but I am here to say that all parents make this deal when they have kids. However, once parents realize this then we do not feel so alone in all their efforts from here on out. It is like when I was in college and I realized that I was like everyone else who was trying to do the same thing which is figure who I was. My point here is that overall we are all a part of the same experience and struggle, thus there is a community of people out there just like you. You are not alone! So many families have been what you are going through with your ASD children and come out better than ever. I am living proof of this proven process because I am happy now with a family of my own (thanks to tireless efforts of my parents and all those who came before me). All parents get the joy of watching their children figure who they are. It is the parent’s job to teach our kids that this quest is the most valuable thing in the world. Please know that all of ASD related meltdowns are symbolic of the process of us trying figure out who we are.
Do not think that you are selfish for some days hating the process of raising an autistic child, it is hard, but there is some things you can do about it. You can change your perceptive on Autism and love it for the adventure that it is. Pretend that it is just another battle with dear old Captain Hook and you will live to fly another day. This blog is about how to include your child in the activities surrounding play. The trick being that you the parents have to include yourselves in their world instead of always trying force them to be in yours. After a while your child may come out you like this: “You are fart factory, slug-slimed, sack-of-rat-guts-in-cat-vomit, cheesy, scab-picked, pimple-squeezing finger bandage. A week old maggot burger with everything on it and flies on the side! You are fart factory, slug-slimed, sack-of-rat-guts-in-cat-vomit, cheesy, scab-picked, pimple-squeezing finger bandage. A week old maggot burger with everything on it and flies on the side!” Well I say you come back with, “if I'm a maggot burger why don't you just eat me! You two-toned zebra-headed, slime-coated, pimple-farmin' paramecium brain, munchin' on your own mucus, suffering from Peter Pan envy” (Hook 1991)! Show your child that you get that they are struggling to express who they are and then the real playing can begin. Show them that you value every moment with them and that their experiences should be envied by all!
That what your child is truly and honestly working on is not social cues or status, but something much bigger than that, who they are! That most people do not start consciously working on this until they are much older. By god, you have a very advanced child in your household! So how do ASD and inclusion work together? They are a rebellious form of human connection, where we are challenged by all things we perceive through the five senses. What a blessing this is! Every person on this planet loves to discover new things, but often we do not how to even begin. For people on the spectrum both our body and mind questions everything we experience and learn in an aggressive way often in the form of meltdown or a game that we like to play. Thus, we invite you the parents to do the same and this is how we can begin to play together.
Where does this get us? There are two situations at the end of the movie Hook that give us the answer. The first situation being when Peter is fighting Captain James Hook to the death and they exchange the following words: “Prepare to die, Peter!” Peter said “To die would be a great adventure.” To which Hook said “Death is the only adventure you have left” (Hook 1991). The second situation happens at the end of the movie, where Peter Pan returns home after rediscovering his inner child and makes the choice to no longer run away from his family. Wendy turns to him and said “So…Your adventures are over.” Peter responds “Oh, no. To live... to live would be an awfully big adventure” (Hook 1991). In the former of these two situations, Peter conquers his old fear of death by fully embracing it and in the latter he decides what to do with it. Often people who are on the spectrum are too scared to death to interact with the world, thus they fly off to their Neverland leaving everyone else behind. I beg you the parents to not be like old Captain Hook who feared the ticking of clock and the giant crocodile. I want you to feel like your child and you have all the time in the world to get to know each other.
Having a child on the spectrum often leaves the parents with the feeling that they do not know who their children really are. This why it is so important that parents first learn how to play with their kids before they are taught social cues and the other normal traits of being human. If your focus is truly connect with us then the following realization will happen: “I was hopelessly naive when I [gave birth to] you. I imagined that brilliant people disappeared to some secret place where good ideas floated around like leaves in autumn, and I hoped at least once you would take me there with you” (Finding Neverland 2004). Do you give death to your child’s childhood and believe it will never will happen? Or do you embrace it and help your child choose how to live it? Teach us the world is be something we can play with as a child and not something to run away from. Teach us that our ideas of how the world can be is possible by pretending for a moment that sky is green and that dragons still roam the earth. So that we can grow up believing that anything we can think of or want for ourselves is always possible. From the moment we are born please know we want play with you because we want to include you in the world of who we are.
(Coming Soon Parenthood: The Untold Neverland, Part 6: You Got A Friend In Me!)