I haven’t written for a while. Things have been hectic, with me getting married (surprise everyone!), buying a new house, dealing with Aidan’s transition to a HIGH SCHOOL campus and summer school (!!!) and planning our big family wedding in downtown L.A. next year (our first ceremony was a private one on our boat in Marina del Rey–very California, no?).
My ex just irritated me earlier today by telling me that it was “too hard” to plan out Aidan’s calendar & events & add them in as I do daily for his 6 in-home therapists & school & extracurricular schedule. Which is why I’m posting this…
Aidan was with his dad for the 4th of July and went to see his Walker family in Florida. My ex texted to tell me that there was a tantrum in the hotel: a suitcase fell on Aidan’s foot which set him off. For those that know me, you know I am a Type A personality, not given to relaxation easily–yes I am known to carry files into bars and on the beach to continue working–so having a child like Aidan makes me even more on edge because I am walking on eggshells waiting for the next outburst. My friend Reno and I walked out of a work conference once and I heard birds chirping in a tree and literally jumped. Then I realized Aidan wasn’t with me so I didn’t have to worry about him screaming about the sounds. Reno was like, “Umm you realize you have some serious PTSD from raising this kid, don’t you?” Indeed.
Anyway, I launched into all the prep work that my ex needs to do for Aidan: social stories, routines tacked on hotel walls, informing hotel staff, using props for Aidan should law enforcement appear (headphones to signify his differences as autism at times can be an “invisible” disability), etc.
Then my ex told me that they were spending the 4th at his boss’s condo at the W in Austin. I reminded him that the 4th of July fireworks make Aidan a little like a dog on those days: with the extra sensitive hearing, he whimpers and cries and loses it. I asked “Do you really want to be on the news with a story about your AU kid who tried to (or did) jump off the balcony in a rage?” I scared him sufficiently so that he agreed to let Aidan see the fireworks from INSIDE.
I have Aidan hooked into Gmail, and his Gmail calendar goes to his Iphone and Ipad. In addition, my ex, my husband AND me all have Aidan’s calendar on our various devices–meaning at 4:30pm I will get a phone call from my husband to ask how Aidan’s doing with his therapist that day because it shows up on his calendar, and at 7:31am my ex texts to ask how Aidan did while getting on the school bus that morning. It’s a lot more planning and work to set everyone up these ways but in the end it’s the only way to coparent Aidan across households because it’s not like he’s gonna call or text us on his own.
I’m feeling very fortunate now to have a husband I’m in love with AND compatible with: we travel a lot and he takes the lead in planning for Aidan (great for me!) and isn’t at all embarrassed about the prep work we require of restaurants and hotels. It was one of my questions to him on our first date: “I have a pre-teen with autism and if that’s too much for you to handle, let me know now”. Did I mention I’m direct?
But these are the tedious tasks of being a caregiver to disabilities and something we just have to plan for. Our planning just takes a lot more work and no, even with a 13 year old, I treat it like I have a baby and can’t leave him alone so I can run to the store like some of my friends. I plan things out a lot and it’s just a necessary part of holidays, vacations, and everyday life.
Kind of like when I made the crazy decision to move to L.A. with a disabled kid ALONE: everyone said no, don’t do it, you’re leaving his support system, what are you going to do without family, etc etc. But I just made my little plan, saved my money, and planned it out: money, services, etc. Even when things went sour I didn’t give up the faith in my new outline for the life I wanted to have for me and Aidan. Laying on the beach right now in Hawaii, drinking mai tais with my new husband, who I never would have met in Texas, I’m glad I did.