Wednesday, April 8, 2015

My life with Autism.

I saw you, looking at me as I was slightly frazzled and exhausted, as I worked out my food order for my son and I while we were eating at Elmer's in our little town of Poulsbo. I always ask to be seated way in the back and far from anyone around us. I know the two waitresses that work on certain days and when my cousin Henry will be the cook in the back.  Keeping that ever watchful third eye on my little boy, with his thick brown mop of hair and innocent exuberance. I see HIS energy, and lack of impulse control, flip flopping back and forth, lunging from seat to seat, starting to cry when the whip cream came on the pancakes they were no longer the same size and the chocolate chips were melted. That is when he lost his mind. 

I noted your exasperation and said nothing, simply smiling playful son. When you looked down and then glared at me because my child was having a hard time. Telling me that I should keep him home and not in public. Well saying it to your husband loud enough to have the three tables in our small out of the way section hear. I couldn't help but turn red faced and in a low sigh, I looked at the two little elderly ladies that were looking at me with understanding & pity, I said,"He's Autistic," my heart breaking, looking in the two ladies eyes I knew at that moment that their hearts broke for me as well. Because the one sweet lady looked at me and sweetly said I'VE BEEN THERE, and when you looked squarely at me and said, "My grandson has Autism. I get it, I also raised four boys all thirteen months apart." we locked eyes and I said, "Yeah, I thought you seemed like you understood" You got it, like we ALL do. Except those two, and I know it didn't seem very adult like but shooting the glare at the middle age couple that had been giving us the dirty looks and loud enough comments at the time made me feel so much better, even just for a few moments. 

I gave a deep sigh and said, "It's been a... LONG... three... years..." Perhaps I should not speculate ON YOUR THOUGHTS, but having SAID those words before, I'd like to THINK that more people out there would be more understanding... I always have the feeling of guilt for having to admit that I am so far from being superhuman, that yes, the years have been long; for perhaps being frustrated, or worn down, or unsure, or scared, or uncertain, or - yes- even royally pissed off... I totally thought that I would be a great mom. Looking at one public outing and having him have a melt down that I couldn't control or help calm him down makes me feel like the worlds worst mom.    

It's been almost a  years since B-man's diagnosis, and almost three years leading up to it and his diagnosis of Cerebal Palsy,  B-man's first year of life was super busy with Doctors and hospital stays, we knew something just was a little off and after a year in OT, Speech and Physical Therapy, Akami, Pam and Amber all had at one point or another told us the things that we had already known...that he was behind his twin brother developmentally, we were really unconcerned for the most part, until we began to notice more serious issues. Decreased speech to the point of being non-verbal... Constantly seeking out patterns; at two years old, B-man could literally sit on a kindle for HOURS, recite in actions his favorite Mickey movies. He had near photographic memory for numbers. His physical habits, such as the need to run headlong into the sofa as hard as he possibly could, and the constant need for physical contact, came in waves, directly contrasting the moments of utter "drop out," when he could literally walk in front of a speeding car if you didn't have him in a vice grip, because he just "wasn't there" at that time... 

It was and is very terrifying. We moved to our home in a new school district and B-man started to go to a head start pre-school and he even gets to ride a bus, with a bus driver that grew up with my Dad, its the best thing about being in a small town. Then there is his new teacher Pat she is simply amazing with him and the aides that help out in the class, because of this he is making small strides at getting to a better place and together him and I are finding our voices. 

The difficulty bringing him places, because of my own issues of inferiority as a mother... Concerns that were often reinforced by people's judgmental comments, cruel looks, and having no explanation for it... there was this beautiful, loving, amazing little boy in there. I was in denial about the Autism being part of what was going on. I thought that this behavior was just his way of telling us how he was feeling, that it couldn't be anything more then the CP that we were already aware that he had. Eventually though, denial grew into suspicion, as our parental instincts finally won out. Finally came the guilt, as I realized that my husband and I were in WAY over our heads. The only way that we would do right by our child and get him the proper care and diagnosis he needed was to bring in the experts. 

On August 13th 2014, as I sat at Children's Hospital in Seattle, with its child friendly decor and my mom by my side our little B-man not being able to sit sill for three minutes and finding only joy with putting his small little hands in the stream of water in the stainless steel sink. Dr McGlophlin look at me in my eyes and I heard the words, "Autism." and started to feel like my world was falling in on me.  He continued to talk and all I heard was the voice from Snoopy unable to really catch anything he was saying. 

And THAT was DAY ONE, not even a year ago yet.
I will be sharing my experiences not because I am an expert at any extent. Nor have I even be able to come to terms yet with things yet, but because my unknown friend that just stumbled across this blog right now, needed to find this, to read this and feel like its going to be ok.  That in the last three years, of fumbling to find what is wrong with my son.  Sobbing in the shower because it is a place that he can't hear me. In the car on the way home from one of the many appointments that I was told to something new.I have aged at least TEN YEARS, easily. 

Being an "Autism Mom" for a the little under a year now, has made me more tolerant, in public or otherwise, of every type of child, with the exception, oddly enough, of my own... I still have that underlying anxiety that my two beautiful boys are going to be beyond my control. I do the one on one time with them with ease and cancel a lot of times when we have plans. So please, if I seem stressed out or impatient, exhausted, or snippy please try to and not judge me a bad parent... And understand, that this is NOT an apology for my kids, or an explanation. It's strictly an explanation of myself. Also I will never applogize to the people that give the dirty looks, or make the ill-mannered and just at the volume that can be heard comments. Horrible comments that hurt and cut deeply. I often will snap back at you and the looks you give will pail in comparison to the look I will give back.  

What I know is that my baby is so unique, and will face many challenges, some so great it's going to feel very devastating, but there is not a single Autism Mom that I have EVER met that doesn't not believe that their child is anything but a million beautiful colors of the spectrum. 

I hope you enjoy my Journey. I would love to hear about yours.