Autism sucks. No wait, it doesn’t suck all the time. There are days when I thank my stars that Autism came into my life like a Cat 5 Hurricane and leveled everything good, I had ever known and worked for. When the storm was over, I clearly saw the good that Autism has brought into my life in terms of the extreme changes to the way I previously viewed the world.
Change is scary. It brings a different level of unpredictability. You need change although we can fear it and sometimes resist it. Eventually change brings new life to a situation. Change to someone living with Autism though is debilitating. Depending where you are on the Autism Spectrum, change can be excruciating and cause physical pain to an individual and if left unchecked, to those around the person.
Such is the case in Chez Fikar. If you have been playing along with our home game and are familiar with MOFK posts then you know that my Jake was diagnosed with Autism as a toddler. This was a shock to my system after waiting so long to create a life. It was a blow that I just did not see coming. It was a change to what I expected but hey, life gives you lemons and you make lemonade. By the way, I love a good lemonade but hate the cliché. I adore lemons, but I digress.
In the early days, I read everything I could on Autism and spoke to anyone who even whispered the word Autism. I was a sponge and wanted to know what I could do just to help Jake feel whole and be able to express himself. It was a full-time job, but I was silently relentless in my quest to help Angel One feel comfortable in his own skin. One of the first things I figured out was that everything in Jake’s world stayed the same. He became agitated and distressed if things changed. The same foods, the same routines, the same bedtime stories night after night, the same red shirt on Wednesdays. Same was the name of the game. I found however, that when we shook things up and tried something different, Jake would react, sometimes vehemently but the next time a similar situation popped up, he would sail through it with ease. Hmm, I thought. Let’s try this change thing. Let’s shake things up as much as possible on Third Street.
As Jake grew older, I would explain that things weren’t always going to stay the same and that you needed to learn how to deal with it. Hell, I hate change too I told him. When MAC discontinued my fave “Hodgepodge” lip liner, I fell into a tailspin that still gives me shivers each time I pass a makeup counter at Ulta. Ok, that’s a humorous scenario and while true just shows you that change is different to every single person in every situation. Jake seemed to understand my change scenario as he knows that makeup and I are fast and furious friends.
The years rolled on and Jake and I would talk about how a shift in routines can make him feel. Our therapy sessions lasted anywhere from five minutes to two hours. We would explore his feelings and I would ask him to try and tell me what was bothering him and why. Two summers ago, he started journaling his feelings. I am happy to report that this decreased a lot of frustrations and taught Jake how to look at things from different angles rather than boxing things up and coloring them black or white. Again, this is a lifelong process and strategy, but it has helped Jake to see the world in a different way and realize that hey, change is not so scary. We developed a phrase that we are going to market “Things change…and that’s o.k.”. It is our Madre/Jake Mantra.
Last summer, we hit a rough patch at home. Jake was arriving home after his summer job (yes, Jake works two jobs) beyond agitated. He would have frequent meltdowns (which by the way are extremely intense at times) which started to change the fabric of our daily lives. These waves of anxiety were ripping apart the comfort blankets that kept Jake calm for so many years. The suggestion to make a shift in summer employment came from Julia who suggested that maybe Jake take a summer off and not work this position. She said it’s simple Jake, you need a break. It isn’t that simple in Jake’s head. He’d worked for years in this position and the thought of a new plan terrified him. He was absolutely beside himself trying to make heads or tails of what to do. On Monday, the email solicitation was released to district employees interested in working the summer education program. My phone buzzed. It was Jake texting his thoughts. He said “Mom I think I’m going to take a break. My mental health is more important than six weeks of this program.” I stopped what I was doing at work and burst into tears. I simply responded “Good decision Jake. Proud of you.” The next day we received a screen shot of Jake’s email reply to the program director that he would not be returning to the program this summer but thank you for the opportunity. My God, this was huge.
Last night I looked over at Jake on the couch after dinner. Phoebe had curled up next to him. He was calm and had his signature grin on his face. I said “Jake, I just want you to know how proud I am of you. You took a step today to protect your happiness. That’s not easy to do sometimes but you did it!” He looked at me and said, “Yes Mom…Things change – and that’s o.k.”.
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