Today as I watched all the kids playing in the backyard enjoying my sons birthday party I sat quiet for a moment as I pulled out my phone to check the GPS that is attached to my special needs son just to make sure he was still in his room. I sighed a bit inside and wondered if it would be worth it to try to get him to join in the fun but then I reminded myself that he is happy in his room. He is happy with the quiet, his sling swing that hangs from the ceiling and his obscure YouTube videos of people opening Dvds. I let him stay in his happy place and reminded myself that this is okay. He has his pizza and his cupcake but I still felt that inner voice asking if he really has all that he needs.
The thing about caregiving an individual with autism is the wondering if you are really doing what will benefit you emotionally or what is benefiting them emotionally. It is the the constant questioning whether an experience is really worth the battle. I have found myself asking this question more and more as he gets older and his outbursts grow with his age. Two years ago I was all about inclusion and getting him out of the house for new experiences but in the course of the past few years filled with many types of regressions and skill acquisitions I have found myself choosing the path of staying home. I have not had a birthday party for Aiden in the last two years because he prefers instead to be left alone and I learned that the partys I was throwing and placing so much work into weren’t for him. They were for me. Admittedly it took me much longer to come to terms with this fact than it should have. I guess in a way I just wanted him to have what every other child has but I was acting out of expectation not reality. The reality is that he is different, he would rather have people come one by one with used dvds, more chew necklaces wrapped in paper he can tear open on his own and for the people to just go.
I thought about teaching Aiden to pedal his bike but then he hates to be outside so how does that increase his quality of life? I have to ask where is the line between introducing new experiences for life fulfillment and forcing him to do things he hates because I feel I am obligated to or because MY soul needs him to experience it?
There are times at home when he feels almost like a ghost in the house. You don’t see him much until the internet goes out or he needs something like popcorn for the third time that day. There are days I want to reach out to him but that’s not how autism works. “I love you Aiden” “blue, blue blue WXYZ Detroit” he says back quoting the local news station’s call numbers. Surrendering to that familiar wall that we autism parents know so well I repeat his scripted words with a smile on my face as he flaps his arms and runs off moaning happily. I smile inside for just a moment until the room falls silent once again and I am left empty with only my thoughts.
It is so hard to know that he is getting what he needs. Sure he has his own room, he has a family that loves him, he has food, showers when he needs them and the house is pretty well set up for him but then what about emotionally? What am I missing? Is he happy? Is he content? Is he hurting? Am I doing enough? Not enough? Am I way off or am I right on the mark? There is no scale of right or wrong when it comes to knowing. Autism is a world that everyone says is so black and white but to those on the outside caring for individuals on the spectrum its gray as gray can get. Its dark gray, its light gray and everything in-between. There is no manual to guide us despite all the guidebooks written by professionals, Ph.Ds, Psy. Ds, social workers and the like. I don’t open these books anymore. The books I want to read are the true stories written by parents and those on the spectrum. The moment I open a book and swiftly look at the Index and see the words “Chapter 1-What is autism?” I immediately close the book and put it back on the shelf because I know that book is out of touch. I want to talk to someone who is living it. I want to take a walk with someone who wears the same old worn out sneakers I do. I want to look in someones eyes who bear that glassy tired look surrounded by that puffy darkness that we cover so well under our foundation. I want to feel the uncertainty in a hug and just let it pass between us. Autism parents. The only ones who get it.
I suppose its safe to say the loneliness is getting to me. The isolation even more so. Yesterday as I scrolled the contact list in my phone I couldn’t help but notice that my contact list is dwindling. There’s no anger in me It comes down to one thing, I cant get out to see people and while other’s lives continue mine seems to be standing still. There is a special needs group that meets in our area that offers sports for our children which I have tried but my son wont catch a ball so baseball is out and bowling proved to be a flop because of the TVs at the alley so each week As the pictures of my friends flood my news feed I send out a like and smile as my phone sits silent. Finally yesterday I couldn’t take it anymore and called a friend and just to hear a voice on the other end talking about something other than autism or therapy was amazing.
There’s something about severe autism that places you in a whole different bracket of autism that our society seems to forget. The part of autism our society knows is “quirky”. The “Sheldon Cooper” definition. Cute, funny, idiosyncratic yet brilliant. I have met many such children and they are definitely amazing people and I absolutely love their company and wit. But what society fails to see is the other end of the coin. The “forgotten world” of autism that even the autism community seems to have forgotten.
What do I mean? Let me paint a picture for you. I have been privy to a few “special needs groups” and please know that for these groups it is amazing its a wonderful thing… Until you begin to realize after each special outing that you spend the drive home in your car crying because your son is lower functioning than the others and the outings planned for the group are beyond your sons abilities. That’s the severe autism no one sees. Its the mom sitting quietly at the table surrounded by all these children who supposedly have the same disorder as your child and are sitting there talking, relaxed, as your child is sitting on your lap eating the napkin instead of the pizza.
After a while I gave up going. I think its just part of the cycle. Maybe In three months I’ll be good to go again. Maybe Its that I am not physically able to battle him physically anymore so I am fearful to take him out anymore. Or maybe, Its that I am finally coming to terms with HIS reality instead of mine.
But what does that mean in my world? It means trying to find contentment in the quiet moments. It means allowing a down moment instead of racing here to there and battling a world not set up for Autism. It means a shorter contact list but more time for contemplation. It means isolation. It means intense mental stamina. It means taking in the little things like the blue jay that hangs out by bedroom every morning or a freshly mowed lawn or taking an extra long shower without having to run out in a towel three times to make sure he hasn’t run away.
Life with severe autism is lonely. Its not talked about much. The screaming, the yelling, the meltdowns in public, the judgmental looks, the confused stares, the schools that have no place for your child, the diapers at 7 or that feeling you get when you see a typical kid at the same age as yours and just stare because that is what your child would be doing if they were “typical”. I have talked to a few ten year olds and I ask them whats in, whats hip, what they are in to and I take those conversations home with me only to see my son watching “Kermit’s swamp years” on the dvd player rewinding the opening scene incessantly. There are days ill admit I give up. There are days I feel so depleted that I don’t even know where to start and so I don’t. I just make his favorite food so he will eat and sit in the living room listening to the slight sound of dvds opening and closing in the next room while reading a book.
I have to know that we will be okay in the end. We are on a journey that is leading us somewhere and in every journey there are going to be dark places especially when you are in a place you have never been before and the road hasn’t been built yet. It kind of reminds me of in Alice in wonderland when the creature sweeps up the road just behind alice and in front of alice until the only road that was left was the road just beneath her feet. Theres no looking back.
If you are anything like me on this journey, sometimes when I try to reflect back I cant. I can remember silly facts but I don’t remember the details. I don’t remember the emotions of potty training him. I mean i do vaguely but could I adequately place it into words. Probably not. This is a day by day process. There is no room for tomorrow or yesterday when your mind is so full, your emotions are running rampant and you must remain even keel to be good for anyone. Care giving is exhausting. Is it rewarding? Sometimes yes, but then there are parts of the process that are down right painful. There are days I feel forgotten. Days I feel left behind. But then there are days I feel like I am part of something bigger than myself. Days when the road less traveled by is so incredibly amazing. I suppose that’s what is life is all about. Finding the light. that cliche saying ‘the darker the night the brighter the day” is proven true every day my eyes open and that familiar Charmin toilet paper commercial tune fills my room. Its this very fact of light that I am able to cry and smile in the same moment. Its the Hope I have that someday this is all going to be okay somehow even if today, in this moment, it feels so far from okay. Sometimes all it takes is one phone call. One coffee. one soft smile to remind me that I’m not forgotten even when, deep in my soul, it seems I am.