It’s been almost three years since wild man was given “the diagnosis” but we knew before that. I think back to all the early signs and question myself did we act fast enough, could we have done this, should we have done that. I still remember his last actual meal, he was 20 months old and we were out at one of our favorite restaurants. He had chicken along with some french fries and I believe he ate just as many fried pickles as I did. If I would have known that was the day he would pick to stop eating I would have opted for something a little nicer.
It’s not the diagnosis that drives me crazy, it’s how people react to the diagnosis. Yes our son has autism and sensory issues but we all have things that make us unique. Our days are last longer than most people’s. He does not sleep. We have tried all the ideas that people feel the need to tell us to try. And while he does use his weight blanket and his vibrating music pillow sleep still eludes him. The fact is he just can’t shut down. And when he does not sleep I do not sleep. I am his comforter. He feels safe with me. You will not find a boy who loves his mommy more than my son loves me. Ask anyone that knows us. I am his favorite person. Our mornings start off with kisses and “no I no goes today” talks for which I am so thankful for, a year ago these talks were not possible. I spend my days fighting for him to have a normal education, while inside I question if I am doing the right thing. I worry if he will be excepted by is classmates in the new class, but I want him to be challenged I want him to add to his ever growing mind and his abilities. He pushes back but he will thank me later, I hope he thanks me later. I want to baby him and protect him from everything, but I also understand I can’t always protect him and that something’s are necessary for him to go through so that he can be the best he can be. In the last 7 months he has far surpassed the doctor’s and teachers expectations. He is learning sight words and even learning how to hold a pencil, things many take for granted but we were not sure we would ever see him do. His personal aid sends pictures to ease my mind and assure me he is making friends and that he is enjoying class. After he is home he feels safe and can normally be found in just a pull-up or underwear. Sensory disorder at its finest. Clothes bother him. So if you disapprove of him running around like that don’t bother coming around. He lives here, not you. This is his safe place he will do as he pleases. He can spends hours sometimes lining up his cars (smallest to largest front to back no spacing in between) in long seemingly endless rows that we dare not touch or move for we know a meltdown will surely occur. He parallel plays most days with his siblings, but on the rare occasion you will find them all playing duck duck goose. He repeats himself if he gets excited or nervous and if he is having a bad day he will sit and spin in circles. As for food this past month he’s sensory issues limited him to: french fries, KFC mash potatoes, stage two peas, yogurt, and strawberry pop-tarts. He’s obsessions include: airplanes, five nights of freddy’s action figures, the chicken dance, and Disney’s Cars toys. There are days we dance, there are days we cry, there are days I’m not sure I’m strong enough for him. Trips to the doctor, like today, I dread. I pray that no one will be in the waiting room and if so I pray they don’t mind him setting beside them, he will even if they do. Personal space means absolutely nothing to him. We are out of his comfort zone the sound of a baby crying or another person on a phone can lead to a meltdown, today it was the noise the water dispenser made. After we were home it was his usual two baths before calling it a night. It was filled with “momma hold me” “I love you’s too” “take me sleep” phrases in his sweet little voice.
I wish I could go back to the days before we knew he had autism. Back to the fairy tale people push that everyone is equal and all are treated the same no matter what their gender, their race or their disability. He falls in the middle, their are others who have more severe autism and there or others that are blessed with talents from it. I wish we slept past 5am. I wish we went to sleep before midnight. I wish he had a normal diet. I wish he could tell me what hurts when he is sick. I wish I didn’t worry about his future, our future. I wish people would not stare. I wish people would not judge. I wish I had all the answers. But I know that’s not possible. I wish people could see him as I see him. I wish they would look past the meltdowns and the mood swings and see him. He is the sweetest most kind loving child I have ever met. He makes me smile daily. He may not speak much but his actions speak volumes. His love is unconditional and without boundaries. He sees things through eyes like no one I’ve ever known. He does not judge others. He enjoys life to the fullest. He is a free spirit. He is my sunshine on all my cloudy days.
Autism is like an amusement park ride, to be more specific an old wooden roller coaster that beats you up while taking you to unreachable heights only to drop you hard and fast. Everyday is a new adventure. Around every turn something new slaps you in the face and you find yourself praying that you don’t screw things up. Its our life. It’s real. It’s a struggle. It’s frustration. It’s small victories. It’s spontaneous laughter. It’s meltdowns. It’s love. It’s hope. It’s our normal.
From our beautiful chaos to yours look past the disabilities to see the person. You don’t know what your missing.