Yesterday was one of the toughest autism days we have had in a while. It was one of those days where it all came crashing in with a vengance. I kinda knew it was coming. you see, For the last few months I have been keeping Aiden home exclusively (except for therapies and our local autism support group meetings and of course school). I have been working my schedule around his to get my outside running done or hiring babysitters to come stay with him while my husband got a few hours to ourselves. But yesterday, it couldn’t be avoided. There was a Christmas party for the local group for individuals with disabilities that is an adaptive sports group. A gift was being provided for the panther members but not their siblings so I wanted to run to Meijer to purchase a small gift for my other two children.
I made sure my phone was charged just enough to get through the store and made sure I had the iPad that would automatically connect to the stores WIFI and packed up his wheelchair that I, admittedly, use for restraint purposes in these types of situations. I pulled into the parking lot knowing I had left the handicap placard in my husbands car but chose to park in a handicapped spot anyway. I circled the left side of the building knowing this is where the toy section was and pulled into the first spot in front of the door. I figured the autism stickers all over my car would tip people off that i was, in fact, qualified to park there. I jumped out of my car as the older woman in the next spot watched on as if making sure I had reason to park there. I opened the hatch and as I pulled out my sons wheelchair I felt her eyes fixed on me just staring. I get that a lot. Once I pull out the wheelchair it’s like people have to see the purpose for it like there is some sort of alien that would emerge from the mini van or something. Curiousity I supposed. I opened the back door and helped him out the car and strapped the harness over his shoulders and the Belle Tire hockey jacket that a local hockey team had given him. I stopped for a moment to consider it a symbol of my harnessed dreams of what I thought could be before autism entered our lives. I closed the hatch and walked in the store.
I knew right where I was going. My daughters favorite toy, LOL dolls, (and not just any LOL dolls these were the GLITTER SERIES) were on the display in the middle of the aisle about 40 steps straight (I have the complete lay out of this store down pat). I walked in circling the LOL doll display and then he saw them, the DVDs, and it began. The kicking commenced and immediately I regretted the decision to not use the foot straps. He began to fight me and people began to back away from us unsure of what to do. I grabbed the back of the chair and tried to maneuver it to the other side where the Dolls were and he calmed for a moment and just as I turned to grab one of the perfect circle balls covered in silver wrap he kicked off the the side of the end cap crashing into a gentleman’s cart. My face was on fire as my heart pounded from embarrassment and adrenaline. I got mad at myself for forgetting to set the breaks (this use of a wheelchair for restraint purposes is still new to me). As I Struggled to hold him down in his chair I looked straight into the mans chest and apologized emotionally unable to look him in his eye. But as I fleetingly looked up I immediately took note of the shocked look on his face. “It’s okay” he said as he stood frozen still staring. I handed Aiden the LOL doll placing it over the screen of his iPad determined to find a gift for Caleb. I anxiously and quickly scoured the endcap as my heart raced and he screamed still struggling to get to the DVDs just out of sight. I looked over and saw a nerf gun at the end of this same middle aisle presentation and picked it up trying to remember if Caleb had the same one (knowing I would end up with it either way because time was running out). I studied the box to make sure the nerf bullets were included (knowing Aiden would eat them in no time just like the last one that remains entombed in a toybox due to lack of ammo that aiden had eaten before).
I stood in the check out line behind his chair talking to him trying to keep him calm as he placed his right foot on the floor and pushed backwards but this time I had remembered the locks. I talked to him in a calm tone but everything inside of me was screaming. My heart was racing, I was sweating, my face was on fire and I was physically shaking. In my mind I was begging people in line in front of me to “go faster! please! hurry! scan it! Lets go!” but outward, people just saw a woman in yoga pants and a pony tail talking to her son in a wheelchair calm and collected. I could feel people listening. In my head I reassured myself “you are almost there, see the door? It’s less than 80 feet away. Your typical kids deserve this. This is for them.” Once the middle scanner opened up I quickly approached it. Made sure to lock the wheelchair in place and scanned both items as my hands shook. once done I grabbed the bag placed it on the handle of the chair and walked swiftly out of the store still telling Aiden in a soft tone, “You did a great job! I’m so proud of you!”
I pushed his chair into the blue lined area meant for “real” wheelchairs realizing for the first time from experience the importance of that small area. I loaded the things into the car and just looked at him for a moment as if to amass what little strength I had left to finish this trip. My heart broke at the frustrated look on his face and took a moment to take a picture of it.
I talked calmly to him telling him he “did a great job in the store” noting that this was probably just as stressful for him as it had been for me. I released his restraints and as he was getting into the truck I realized he had wet himself at some point on our trip. I folded the wheelchair put it in the back of my truck in the space my hockey equipment usually resides, closed the door and climbed into the front seat that was seat still warm.
I looked up and watched a police officer walking past noting that I had not been given a ticket for not having my handicap plaque mounted and wondered, when he gets bigger, would that police officer help me? A strange thought but when I realized the answer, in my mind, was uncertain my eyes filled with tears and as the adrenaline left my body in the form of tears and exhaustion I put the car into drive and turned on the radio.
Looking at the clock I noted I had about an hour before I had to pick up my other two children from the bus stop so I just kept driving. I circled the back roads and searched for why I was so broken up. After all this time, why does this still hit me so hard? And as I replayed my entire day in my head which began with a therapist at my door at 9 am and staying until 2pm and my mind went to that place of picturing other moms getting their groceries in preparation for the weekend or meeting for lunch or even just watching a show at home in their pjs and messy hair in silence. I thought about my ten year old who was peeing himself all day and the two loads of laundry I had to do despite waking up to an empty laundry basket in the morning. I thought about the pictures of everyone’s children in hockey jerseys and excitement over their upcoming tournaments. I thought about the loneliness and how shut in I feel. I thought about the Job that I loved that I had to walk away from just this week because of the struggles at home and I just let myself feel it.
I called a friend I knew wouldn’t understand but that always seemed to know just want to say and this time would be no different. As i described the recent happenstance she told me to remember all the blessings in my life reminding me that “It’s so easy to get stuck on the negatives”. I took this advice to heart and as I walked into that Christmas party, that I almost declined attending due to Aiden’s behaviors, and saw my table of autism mom friends smiling and willing to help (as their children are quite a bit higher functioning than Aiden) and I immediately relaxed. Even as Aiden melted down over a DVD another child received as a gift and I had to wrestle him to the floor and carry that 68 lb flailing body back to our table missing out on the group photo I knew all was well because I had people there that loved us. I had people rooting for us not judging us. I had someone to pick up my phone after it went flying in the scuffle and as I layed my head down last night after all the struggles I closed my eyes and felt lucky. Because ya know, our situation may not change but my mindset can. Ultimately its up to me how much I want to let autism take from me and ya know, it may take some of my freedoms, it may take away a job that I loved but it can’t take away my peace unless I let it.
To those of you struggling, who may relate to this experience on a level you sometimes fear to admit you are lucky, you blessed if you have even just one person on your side. Hold on tight to them. They may be the ones who don’t really get it but stand there, sometimes silenced, but ready to help where they can. Focus on those people. Your child is the one thing in this universe that causes others to shine brighter. Your child is important and needed. Your struggle is needed. Your story is needed. TELL IT!
Because of our struggles of our day this picture of us the very same night at the Christmas party is priceless. We Made it and even captured one small smile.
“A lot of what is beautiful in the world arises from struggle”- Malcom Gladwell