April 2 marked another Worldwide Autism Awareness Day. Until this past year, this “awareness” day did not make the “recognized” list in our home, because before this year we “knew” Samuel had Asperger’s / Autism but didn’t have the “diagnosis”. Some may say we delayed diagnosis because of denial. For me, it was about placing a label that would forever change his life. The diagnosis did not change who Samuel is to us, but it has changed everything in regards to his medical records and his school records. I have to say it was a very hard weekend for me… harder than I ever remember… and I sit here wanting to cry as I type this.
Because of the “Awareness” day, I think on Sunday I became even more “aware” of Samuel – bringing my fear and my love for him even deeper. The last time I lived a weekend like this was when I had to complete hundreds of questions about how he acts and reacts etc.. for the diagnosis process. I remember completing them quickly and then I sat back and really observed him and had to change many answers to answers I didn’t want to answer. I then read the teacher’s assessment and that was the first time I had an “outsider” tell me. I wanted to change the test – I wanted to make a list of everything he can do (which I did type and include) because I didn’t want the test to define him!!!
Before church we have fellowship time where the kids get to play together. It is eye opening for me to see him with other children. They play “tag” and Samuel is always “IT”.
- Will his coordination skills ever allow him to run correctly and faster?
- Will he always be the target for being “IT” because he is the weaker link?
- Will he always find it difficult to relate to children his age – i.e. he doesn’t play sports, he loves trains and Godzilla (not the norm)? He can’t play video games because of eye/hand coordination?
- He goes toJuniorChurchand I can hear him and them trying to talk to him – probably trying to explain something he doesn’t “get” – frustration for both.
Samuel is VERY literal… so on Sunday, we had communion at church
- Will He ever be able to invite “Jesus into His Heart”? That is how we describe it often to people – but to Sam that would literally Jesus would live in His heart.
- Will he ever be able to understand the comparison of Christ’s Body and Blood to Communion? Will he ever even take communion because he doesn’t like juice or bread?
- Will I be able to teach him? If not, I am sure Christ will understand because he created Sam to think like he does (=
After church the kids play on the playground – Samuel chooses the swings.
- Will he ever be able to “swing” himself. I have tried to explain how to “pump” your legs but it just ensues frustration. Does he get made fun at school because he can’t do that?
- Will he ever be able to ride a bike. OR will his lack of coordination from the way his brain works prohibit this function?
Yes, everyday is awareness. On Monday when I saw people not wearing blue or not acknowledging it, it broke me heart. I wanted to scream “Do you not know what today is?” I was disappointed that people who I thought should show unity in the awareness day (with a simple color) did not – this includes healthcare professionals (they care for our children with autism) and school personnel (they teach our children with autism). I asked myself how much education do school teachers get in teaching children with Autism. I asked myself how much education do health professionals get regarding Autism and caring for our children? I can tell you as a parent your only education is living it and researching it…
There are more things I was AWARE of that led up to and the day of Awareness…
- Samuel is 100% loving – he says what he means and means what he says. He even gets mad/upset when people are mean/not fair on movies.
- Samuel is 100% honest – he cannot lie. You see in my corrupt mind I create different situations and make sarcastic comments that stretch the truth. Sam is LITERAL. He tells you exactly what he sees and knows. We definitely could use a few more Sams in the world. Unfortunately, he will never be able to be a politician (LOL)
- He can build elaborate train sets, lego creatures, and angry bird set ups. His imagination is limitless – which is inspiring in this day and age of technology that can do everything for you.
- He is amazing at solving games on my droid phone because they eliminate “writing”.
- He is easy to cook for because his menu selections are so limited (=
- He brings a smile to my face every single day. Whether through his corny jokes, his movie one-liners, or that moment he ”gets” something.
As a mom I need to PREPARE to be AWARE! I need to:
- Increase my education to better help Sam – investigate learning methods and possible other school settings.
- Get involved in making more people aware (for instance, do you know how awkward it can be to take your son into the woman’s bathroom because he can’t use the male one by himself – or even worse for the dad’s with autistic daughter who has to take them in a male restroom in public).
- Get into a support group or become friends with other parent’s in the “same boat”.
- Fight for insurance company to not see my son’s autism as a “Mental Illness” but as a Neurobehavioral Disease so they will cover it.
I also am AWARE now at how much it hurts when people don’t SUPPORT your awareness. In the future, when I see someone post on FaceBook or read in the paper, etc… that it is “XXXX Awareness” I need to PREPARE to be AWARE of the cause. – wear the color, say a prayer for those affected, and pause to educate myself on the cause. Because to that person – it is IMPORTANT! I owe them that moment… that awareness!
Yes Samuel is 1 in 88 (or 1 in 55 boys) diagnosed with autism – but he is OUR ONE!!