My family and I had the pleasure of enjoying a little mini vacation the past 36 hours. We had a great time. We started our trip with a visit to the dentist for the kids to get their teeth cleaned. We then went to the Indianapolis Zoo, spent the night at a hotel, and ended our trip with a visit to the Children's Museum. It was a nice little break from our daily routines.
On our trip I seen a fair amount of autistic children and young adults. It really makes my heart hurt to see individuals in prisoned by the clutches of autism which is really a neurological condition that effects the entire body. It prevents individuals from expressing them self in a typical fashion. Their bodies are so sick and riddled with illness and crapy immune systems. It's not just "autism" and it makes me sick when people think autism is no big deal. I honestly understand that you really can not comprehend what life with autism is like until you have been there. I do not know 100% what Hayden went through. He has told me things while watching old videos of him that the reason he was acting a certain way was because his tummy hurt. That the air conditioner was too loud and it made his head hurt. Or that the room would not stop spinning when he was perfectly still. I know Hayden didn't feel well. I know that he was hypersensitive to stimulus. I also trusted that the reason he did things had a purpose and was soothing to him.
What I often do not talk about is what it is like to have an autistic child. I really feel like I have PTSD from the whole ordeal. It was hard, really, really, really hard. I feared for my child's safety every second of the day. When Hayden was at his worst I could not take an eye off of him as he would wonder off, jump in a large body of water (he couldn't swim), throw knifes, poop and pee everywhere and anywhere..........my water glass, the sink, the floor, the middle of the road, the front yard, in the car. He would run in the middle of the road with out noticing if a car was coming or not. Hayden tantrum pretty much non-stop. He was always naked. He Often humped a pillow. Hayden was super destructive and ruined our drywall, carpet, lamps, bathrooms (yes, we had to gut our master bathroom as he flooded it with every bath and black mold started to grow). He flushed things in the toilet that caused us to have to remove the toilet to retrieve the items. Hayden swam in the toilet on a daily basis. He put anything and everything in his mouth. I did everything I could do to protect him. I got bladder infections from having to hold my pee out of fear of leaving him alone to go to the bathroom. I did not sleep as he did not sleep. I rarely ate and if I did it was at work or something I could shove in my mouth quickly. I didn't leave Hayden with anyone besides his Dad and even then I was a nervous mess. I have relaxed a bit, but it is still very hard for me to let go of my little man.
Ok, back to my real reason of this blog post. While Ruby and I were waiting to ride the carousel a boy maybe 10 years old and his Mom were waiting behind us. The little boy was clearly autistic. I smiled at his Mom as Ruby started to chat with her (Ruby initiates conversations with everyone). The little boy chimed in and asked if I had watched the Harry Potter movies. I told him that we had not and that we listen to them on audio book. He started telling me all about the movies and his favorite part. All the while his Mom had her arms around him trying to keep him in place and keep his movements under control. I really connected with this little boy and enjoyed hearing about the Harry Potter movies. He also told me that he was going to ride on the red bench on the carousel. It was time to get on the ride. I smiled at him and thanked him for sharing his love of Harry Potter with me. On the carousel I sat next to Ruby on the blue bench (as that is what she wanted to ride) shedding tears. The reason I shed tears is because I know what it feels like to try and protect your kid from others hurtful looks and rude comments. I shed tears because I know a little about what that Mom goes through on a daily basis. Even though I have had a child with autism doesn't mean I know what every other parent of a child with autism goes through as every circumstance is so different. I shed tears out of fear that Hayden would regress and that I would not be able to help him back out of it. I closed my eyes for a minute while on the ride and sent that little boy and his Mom so much love and well thoughts. I also thanked God for Hayden and helping us give him his life back.
Often times I want to say to parents of autistic children that are stimming in public that it is okay. That their child is doing what they are doing to take care of themselves. That it is the public that needs to change and love people for who they are and accept that we are all different. We are all different...........not less!!
To the Mom on the carousel I very much wanted to give you a hug and tell you what an amazing Mom you are and what a wonderful son you have. I didn't out of my own fear of rejection or hurting your feelings.
To all my friends facing autism know that I think of you often through out the day. Know that I know how amazing your children are. Know that you can make a difference. Know that you are your child's best resource. That's right YOU are your child's best resource. Know that you are not alone!!
If you do not personally have a loved one living in your home with autism what you can do is help someone that does. Go over and vacuum their carpets, mow their yard, make a meal, wash their car, etc. All those things would make such a big difference.