Inside The Mind: Autism Awareness

Our world is a bit different than most. Sometimes we have to do the same things everyday, in the same order, because Madeline needs routine. She never stops moving or making noises, she doesn't respond to her name or when people talk to her. She won't look at the camera to take a picture, she won't walk long distances, she loves music but loud laughter will make her cry. She throws things that she doesn't need out of her space. She can only wear certain clothes, shoes and eat certain foods. She has a very hard time sleeping and doesn't play with toys like my other kids do. There's is nothing wrong with her, she is just different. She is Autistic.

When I was a kid I was really shy. I didn't like to talk to people, it made me feel nervous and uncomfortable. Sometimes scared even to the point of panic. As an adult I forget that feeling, because it's really not what my mind would make it out to be. Have you ever had a fear? Or something that made you not want to move? I'm sure all of us have. Even physical things can do this. Being to hot, cold, itchy, sweaty, sticky and so on...When your Autistic these feelings come in forms that seem unknown. But there not. They are just unfamiliar to us because we don't relate.

For example: I'm cold natured, I love wearing a coat when its cold, because I know that it will keep me warm. Is it big and fluffy. Yes. Is it kind of frustrating to have to put on so many layers to stay warm...yes. But my mind and body can block out the other things due to the fact that the most important thing is that it will keep me warm.

My daughter can't block those things out. Her senses are so heightened that the fluffy, swishy fabric is uncomfortable and loud. Her body temperature rising in the coat is to fast and immediate. Instantly in the freezing cold Madeline will fling her coat off. As a mother I insist she put her coat on. A struggle starts, she refuses to put the coat on, swinging her arms, not putting them in the sleeves. She cries or yells. ME: Why will she not just put the coat on?! its cold! This seems like a very frustrating situation from the outside, and yes it is. My natural motherly instinct tells me, she needs to wear a coat. But for Madeline it is causing more harm than good. And the worst part is...She can't tell me why. She just seems to be acting like a defiant child, not wanting to do what her parents tell her.

This is the misunderstood part of Autism that we as parents want to share with world. For acceptance and understanding. What I just shared above is only one of many situations that Madeline goes through on a daily basis. There is a whole list of events that cause her anxiety, distress, overstimulation, anger and frustration. I will admit at first, not fully understanding the diagnosis my self that I would get frustrated with her. "why is she throwing everything?" "what a mess!" "No, not the food in the floor!" "stop! don't take your coat off!" "Not your clothes to!" "Please leave your shoes on Maddie!" "Stay in your seat belt!" "Why will she not get off the floor!.. everyone is looking at us.." "Please just let me brush your hair it's a mess" "can we wear a dress today?" "Sandals?" "hair in a ponytail?" "please don't pour that in the floor" "stop grinding your teeth" "Please go to sleep...please, its bed time" "She won't look at me...will she ever look at me?" "Will she ever say I love you back?"

This was my life for a while until I started to do some more research, I saw she was struggling, but I didn't know how to help her, because I needed to know the problem, before I could come to find a answer. She can't tell me what's going on, So I have to find out what is happening. I had to stop and watch her instead of react. This is easier said than done. "What is going on around her?" "What is she feeling?" Putting my self in her shoes so to speak. I had to get on her level and see the world the way she did. What I learned was remarkable. She is able to see, feel, taste and touch everything all at once. This is an extremely overstimulating world to live in and I have to help her navigate through it. Not be the one to cause her more stress. She is not giving me a hard time, She is having a hard time.

Once I came to this realization things changed and my world became her world. I had to find ways to get her through a grocery store, like taking breaks and letting her have a stimming toy with her. I had to keep her on a routine which helped with anxiety. Making her room a safe and sensory friendly environment. Letting her pick out her clothes, which are loose, soft comfortable things with no tags or irritating fabrics. Velcro tennis shoes so I can put them back on quickly after she takes them off. Having night lights and weighted blankets for bedtime. Using sign language and a communication device for helping her be able to let me know what she is needing to say.

I can't change her, but I will do whatever it take to change the world for her. Part of that is getting people to see inside the mind of Autism. It is beautiful, I wish I could fully see what her world is like. So detailed, fast, slow, colorful, soft, loud, what an incredible gift. To be able to feel everything of this life all at once. But also difficult. So we must work to be patient with them, love them, encourage them, and understand them. So if you see us out and about and Madeline doesn't have on her shoes or coat and hair is a mess, just know she is happy and we are getting through the day just fine. One step at a time. We are still finding the pieces.

Happy Autism Awareness month! As parents with children with Autism we are always searching for a solution. Just know you are enough and you are doing an amazing job. Take in the little moments. The moment they gave you eye contact, the one day they were able to receive a hug, the time when they ate something else other than there favorite food. Those are amazing steps, and you are doing great things.