We are standing in line at a restaurant, it isn’t too crowded. Jake is overwhelmed by the lights and sounds but he is happy. He is excited to eat lunch out. Jake cannot stand still, he is constantly moving, smiling and pointing out familiar objects. We’ve been here countless times but each time it is brand new for Jake. To us he is cute and we see a little boy who is excited. To the bystander he may seem odd, it may look like he is misbehaving and it makes me wonder. I wonder if the parent I saw with her children thought I should make my kid be still; make him behave. Her kids were sitting, waiting patiently for their turn to order meanwhile Jake can’t quit moving, he cannot stop looking, touching and talking about what he sees. I don’t notice their stares at the moment, my thoughts are on what we are going to order and keeping my eye on Jake so he doesn’t run off. But later when I stop to think about the day I remember the looks and the stares and I can’t help but feel a little sad. My mind wonders to what the other customers were thinking; do they think I am a bad parent and I should control my kid, do they think he is bad? Should I care? Later Allie and I would talk about this day. She told he that she felt sad for Jake but more than anything she was angry. She said she wished she could put a sign on Jake that said ‘I am Autistic’ so people would see he isn’t a bad kid but someone with a neurological disorder and can’t help what he does at times.
Last night as I was going to bed I went in to check on Jake as I always do. He was sound asleep, his face was so peaceful and sweet and I just wanted to take him in my arms and hold him tight. He rarely lets me hold him and when I get the rare opportunity, it is a quick 10 seconds all the while he is squirming. I watched Jake sleep for a bit and as I prayed over him I began to wonder what the future holds for him. I wondered if he would be the freaky odd boy who others make fun of, if he will be able to make friends and I wondered how difficult autism will be for him. I wondered how much harder autism will be for us as his family.
Jake’s brain is different from a typical persons, the signals the brain sends get lost in the process and doesn’t reach him. Have you ever been nervous and you can’t quit pacing or tapping your foot? You try to stop but you just can’t, it makes you feel more relaxed…it feels good. Think about Jake or any other child you see constantly moving, tapping or spinning, it feels good, it makes them feel calm, it relaxes them and helps them focus. Jake can’t quit moving; it is in part autism and in part sensory processing disorder. I can tell him to stop, he tries but finds something else to move, spin or touch. I can tell him to sit down, he will but his feet, hands and head are constantly moving. This is not a kid who doesn’t listen, this is not a kid who is defiant and won’t obey instructions. He tries, I can see it in his eyes he just can’t do it. Now, I am not saying he is never defiant. Jake is strong-willed, stubborn and at times defiant but there is a look in his eye when he is these things, you can see it; you just know. But when he is just being Jake that look is gone, he honestly cannot follow directions; he hears one thing but his body is telling him another and the need to move outweighs what he hears.
Jake is a smart boy but it takes him much longer to process everything. For the typical person or child it is almost instantaneous. You ask a child to sit down and they will. For Jake it might take him a minute to process the instructions but he will follow the direction and sit down. When Jake is asked to complete a task he will but there is always a pause. Most of the time Jake isn’t trying to decide if he wants to do the particular task; he is processing the request, he is trying to understand. At times he is unable to process what is asked of him and when that happens you might see Jake run away, cry, spin, laugh or possibly have a meltdown. As his parent I try to look for signs that he doesn’t understand and because I am with him the most I can usually tell the difference from defiance and not understanding. For those that are not with Jake all of the time it is the most difficult and because he doesn’t have a physical disability most people assume he is not behaving.
April is Autism Awareness month and on April 2, 2014 it is World Autism Awareness day. If I can ask you to do one thing it would be to take a moment when you see a child that is like my son and give that child and the parent the benefit of the doubt. Know that the parent is probably doing all they can to help their child. Take a minute and smile at the parent, it really does help! A simple smile says ‘I am not judging you, I see you are struggling with your child and I get it’. As a mom of a child that is autistic it is harder than anyone can even imagine. My brain never shuts off, each word that comes out of my mouth is thought through. I have to think of how I say each word because they all matter; it is how I help Jake understand. The words I choose help Jake process a request and when out in public it just might keep him from having a horrific meltdown. A smile instead of a judgmental look calms me, it helps me help Jake.
HOPE — that is my word for the year. Merriam-Webster define’s hope: “to want something to happen or be true and think that it could happen or be true”. My HOPE is that Jake will continue to grow and one day be able to go to school, college, have a job and possibly a family. But first and foremost my HOPE is for Jake to be understood.
Autism awareness is very important to me and my family. If we can reach one person and help them understand this disorder a little better then we will be one step closer to helping Jake have a more productive life. I ask that you share my blog with your friends and family. Chances are someone they know has a child on the autism spectrum.