“I TOLD YOU! EVERY TIME I LET MY GUARD DOWN THIS HAPPENS! ALL I WANTED TO DO WAS WATCH A 10 MINUTE SHOW! THIS, THIS IS WHY I CAN’T WATCH A MOVIE WITH YOU. THIS IS WHY YOU NEVER HAVE MY ATTENTION. THIS IS WHY I CANT CONNECT! NORMAL MOMS DON’T HAVE TO…”
“We aren’t normal” he said calmly back to me as I was silenced just having to accept the truth. I fell silent and swallowed down the anger and the tears as I picked up all my belongings off the back lawn again noting yet another desk lamp broken and our change jug spilled once again after him throwing my things out our second story bedroom. My chest felt heavy with tears. And for a first time in a long time it all felt so unfair. For so long I have been trying to find the light in all of this. But today as we passed in the halls and the battles were had and the distance between my child and I lingered I couldn’t help but struggle to find the silver lining to all of it.
I’m tired of seeing the pain in all of the other moms. I’m tired of backtracking to teach skills that he had once learned. The last week has been a week of him Peeing himself whenever he is on the computer. So, after picking up the backyard I found myself in the basement in his therapy room picking up carpet tiles and replacing them with new ones and disinfecting desks, chairs and our vinyl futon. I picked up random DVDs so I could vacuum and when I heard the washer buzzer beep I went to switch the laundry and found the cap full of laundry soap I had forgotten to add to the soap tray of the washer and realized I would have to re-run the same load.
I sat down on the futon I had just cleaned and realized it still smelled of urine “I just threw my grandmothers couches out the week prior due to the same issue” I whispered frustrated and couldn’t help but remember that every time I walk into that living room now filled with only two coffee tables and no where to sit I am reminded of my reality.
Lately I have found myself with a shorter and shorter fuse and its not fair. My patience is gone. I’m tired of waiting on God to answer me. I respond to almost everything with some sort of sarcasm because the reality is just a bit too much to explain to someone.
This week, I am finding that one of the hardest things on this journey is watching other moms with younger children starting off on their journeys and feeling helpless. Its the aspect of being the mom of an older child on the spectrum knowing what theses moms will eventually face and you don’t have the heart to tell them. Its something they will need to find out on their own.
I knelt down next to him and said “HI!” at witch he replied with a loud scream and not just one but three accompanied by flailing arms. I looked at his mom and could see the frazzled look in her face as I continued to interact with this precious boy I hadn’t seen in so long. 5 years my sons junior. He was different this time. His parents were different. Everything was different. We were trying to talk to one another as they worked through their sons issues franticaly asking questions through his screaming about the bathroom as he is terrified of bathrooms as I attempted to wrestle a DVD out of my sons hands physically as the teacher said, “you don’t need to fight him for the DVD” but I knew its a battle that has to be had. Finally, we gave up trying to talk and just battled our kids out of the room. I haven’t stopped hurting for them since yesterday.
Two days ago we attended a local festival and were hosted by The Autism Alliance of Michigan. We were able to get into the park two hours before opening and had free reign of the rides and were treated to a pizza lunch. Aiden loved the little catapiller roller coaster and smiled from ear to ear while riding on it as my heart pounded wondering what kind of day this was going to turn out to be. There was another family there that we had been in a local parents group with and we kept saying hi as we passed on another but because of Autism we could not stop to connect. My husband and I struggled to agree on how we should Aiden’s various behaviors. There were fights and mean things said back and forth more than I would like to admit and by the time we arrived at the venue where lunch was to be served we were so angry at one another. We spent the duration of our pizza inhalation arguing about ABA schedules and courses of therapy as our children Played with other siblings of those affected at the fish tank. (which I noted to be less than par as it was a freshwater tank filled with nothing but various Tetras which only irritated me more for some stupid reason). Aiden sat between us eating the toppings off his pizza and wiping sauce and saliva on my arm which mixed from the sweat caused by the 91 degree temperature outside left me feeling sticky but at this point what was the difference really. I know better than to wear nice clothes when food and autism are involved.
Tonight, as I sit here sitting in my sons therapy room with music playing in the background i keep trying to remind myself that tomorrow I will have two children going back to school and will be down to 1 at home. But as I try to look at the positive side of things i am reminded that “normal moms” have all their kids in school Monday through Friday but not me. That’s not meant for me. Aiden stays home Mondays and Fridays for all day therapy and Thursdays I work which means I really only have two days kid free. that’s 12 hours a week, give or take to do my grocery shopping, cleaning and any running not to mention the financial pressure of needing to pick up more hours on the psychiatric unit. I think its safe to say I’m burnt out and that my need for something normal is ever at the forefront. Tomorrow, after I take my two children to the bus stop to see them off I will pour myself that cup of coffee and prepare for my other sons therapy as I stare out the window at the view of my neighbors perfectly kept lawn. I guess its time to be honest and say that today was definatly not one of my “I got this days”. Hopefully things will get better with some consistency and less pressure to entertain the children during his therapy hours. The school year could not have come at a better time.
Thanks for rollin’ with me on this one. but welcome to my reality.