Saturday, May 30, 2020

Right Ball

On the evening of the first day of e-learning for the kids, Stow spilled a huge cup of Sprite on Sky's computer and notebooks. Sky had accidentally left his computer in our gaming space when he collapsed on the nearby sofa, worn and full of anguish from an anxious day of doing school online. Unexpected changes and lack of certainty are hard for all kids, but they can be crippling for a kid on the spectrum, and Sky was spent. The next morning, when we discovered that the computer was fried, I knew there was no way we were getting through the pandemic and e-learning if Sky didn't have a working computer, so I got him in the car, we drove to Costco and we bought another one. Sometimes, even when money is tight, it makes more sense to take the hit.

Since then, we've had four school Chromebooks (for the younger two kids) crash and my work computer go kaput. We've also had a PS4, an iPad, and a kindle stop working. Pink has started referring to our house as a tech black hole. The only way I finally managed to get the internet to work fast enough for me to teach online was by using an ethernet cable (thanks, IT!!) long enough to snake through the living room, through my study (which had been taken over by the kids), and down the steps to my temporary office in the basement. Even then, when conditions weren't right--and almost ALWAYS related to Zoom--the internet for the whole house would go down. The weirdest day was when my Zoom meeting worked, but no other internet in the house worked.

My ethernet cable making its way in the world.
That's kind of how our pandemic has been going. Today marks the beginning of our twelfth week of social distancing. The kids left school for the weekend on March 13th and never went back. My classes let out for spring break the week before that, and by the end of my spring break, I knew I'd be teaching remotely for the foreseeable future. Like so many families, we experienced lots of heartbreak. Sky missed his first high school tennis season. Pink missed her first flute concert. We had finally gotten Stow set up with a one-on-one aide and were looking forward to see how that change helped him. We haven't been able to see my elderly parents for months and don't know when we will again. We've missed birthdays and other special occasions.....*

It has been HARD. Change of routine and loss of support structures has led to daily meltdowns, some quite traumatic. We've seen regression and loss of skills that make us nervous going forward. The challenges of parenting kids whose inflexibility, anxiety, and inability to really grasp why this is all happening can make a day seem eternal  Not being able to go out for a walk or a drink with a friend to vent has been exhausting. To be honest, the combination of increased stress and uncertainty and decreased in-person support has challenged me and Ren to dig deep into our resource reservoir. And what we've discovered is that we don't have enough to manage this on our own. But, we also have figured out different ways to take turns burning out.

The days are long!
Then, somewhere around week six, it struck me that we were somehow uniquely ready to deal with this situation in a way that many other families might not be. I realized that although this was all Very Hard, we were doing ok--the kids were getting along, Ren calm and relatively pain free, and I wasn't completely paralyzed by stress. That's when it occurred to me that much of what we've experienced up to now had prepared us for this. Thanks to Ren's seven spine surgeries and thanks to special needs parenting, we've had our lives stop in their tracks, and we've had to learn how to adjust when something that was working stops working.

Talk about pandemic readiness skills! Every time Ren has a spine surgery, we go from doing tons of activities to doing nothing. The world around us keeps going, but we freeze in place. Depending on the surgery, this can last anywhere from a couple of weeks to several months. If you've read my posts from those times, you know that there is always a moment where I worry that things will never be ok again. I worry that the surgery and all of the trauma surrounding it have taken us so far out of our "normal" lives that we might never find our way back. But, every single time we have come out the other side wiser--and a little more weathered--but ok. The waiting is the hardest part, but I am learning to lean into it and to believe that everything is going to be ok. It's going to look different. It may not be easy. Some of us will lose more than others along the way, but somehow it will be ok.

I'm also trying to laugh. A lot. This (see pic below) made me laugh yesterday. I don't know why I didn't see it before. I'm sure it has been in the garage FOREVER. Maybe I just didn't pay attention. In Japanese, it says denkyuu, or light bulbs. And, to be fair, the word for baseball is yaKYUU using the same kanji character, but I haven't laughed this hard in a long time.

Right ball
Make sure you're paying attention! Laugh together. Cry together. Keep making your way together. It will be okay, somehow. Even if it doesn't feel like it, it really will!

Right ball, you guys. Right ball.

*These are just examples, of course, and I also know we have been lucky to not have lost as much as so many other people have lost.

** Also, this post is completely insignificant in light of what is happening to black people all across our country right now. Please, listen to black voices, support them and don't ask them to tell you how to help. Stand with them, listen to them, and let them tell you their experiences without being questioned. Also, here are some places you can help.

Wednesday, December 4, 2019

I See You (Almost Ten Years Out)

This week marks the beginning of our tenth year since Sky’s autism diagnosis, which means it has been about eight years since I created Mom in Two Cultures. I don’t know how much this blog has helped others, or even if it has helped anyone at all, but here's what I want you to know, my fellow special needs parents:

I see you.

I see you planning and strategizing before every outing with your son or daughter. I see the time you put into trying to figure which combination of events are least likely to trigger a meltdown, planning your schedule down to the last minute, making sure your bag has the right mixture of fidgets, sensory distractions, and allergy-safe food. I see you when people judge you for handing your phone or a piece of candy to your son as a last-ditch effort to keep him from careening over the edge into a full-blown meltdown. And, I see you when all of your strategizing and negotiating fails and he tumbles over that edge anyway, tearing your shirt, hitting you in the face, running out into the street. 

I see you stumbling into work, bleary eyed and overwhelmed after wrangling your child onto the bus, following a morning that included screaming and refusal after refusal—refusal to get out of bed, refusal to put on clothes, refusal to eat breakfast. I see you as you try but fail to keep your voice even and your reactions measured because you know that losing your cool will trigger your daughter’s anxiety and make everything harder. I see you teetering at your own breaking point as you fight to keep your exhaustion and frustration masked just long enough to get him to school and yourself to work.

I see you up late night after night carefully composing emails to send to his teacher, his principal, his therapist, his doctor, his IEP team, as you struggle to figure out what has triggered the latest regression and how you can prevent the inevitable downward spiral that will happen as a result. I see you sending notes to teachers thanking them for their work and sharing with them the latest insight you gained from wherever it was that you gained it. And, I see you meeting the bus every day with an encouraging smile as you try to will your daughter through this tough spot and help her get back on track.

I see you on the phone with people who have never met your son but who think they know what he needs more than you do. I see you set your jaw as the person on the other end of the line tells you your daughter’s need isn’t great enough to merit services. Or that her need is too great to benefit from the services they offer. I see you wracking your brain to make sense of these two completely contradictory responses that sometimes happen within hours or days of one another. And, I see you on the phone fighting with the insurance company to cover what they’re supposed to cover or with various billing offices as you explain one more time the delays in payment. I see your eyes widen incredulously when the provider tells you they can’t accept your son after your yearlong wait on the waitlist simply because they don’t take your secondary insurance (even though they take your primary insurance). 

I see you constantly choosing which battles to fight and which battles to forfeit because you don’t have enough time or energy to fight them all. 

Stow coloring
I see you as you cry for your child who has been left behind by his peers, who plays at home alone instead of with classmates, who can’t handle the excitement of a birthday party or the uncertainty of a night away from home. I see your fear as you wonder how the other children will respond to your daughter’s overtures and burgeoning attempts to make friends. I see you as you try to comfort your daughter while you also try to explain which of her actions was inappropriate or annoying to the kids on the playground so that maybe she will have a better chance of getting along with others next time. 

I see how incredibly isolating it can all be.

I see you when you meet eyes with your spouse across the table while your child falls apart over dinner. I see how you look at each other knowingly but also desperately because neither of you knows how to make this better. I see you trying to protect one another from the confusion and the pain that is a real part of your day-to-day life. And, I see how guilty you feel for feeling that way about this child you both love so deeply, so fully.

I see you as you examine the bruises and scratches on your arms, your swollen lip, your disheveled hair and as you wonder how there isn't more evidence of the emotional and physical battering that this kind of parenting brings.

I see you comforting your neurotypical children as they cry about broken toys, broken plans, broken hearts. I see you as your struggle for words to help your neurotypical child to remain happy and hopeful despite the ways that life can be difficult and unfair. And, I see you worrying about whether your other kids are getting the attention they need and deserve.

I see you as you lie awake at night wondering how you will keep your child safe. I see you as you try not to think about the statistics, about elopement, about accidental drowning, about seizures, and about all the other terrifying things that are part of your life. I see you as you sit dumbfounded wondering how your child has slipped away again and paralyzed with the fear that comes with knowing that maybe this time you might not find him in time.

I see you fighting to make the best decisions for your child, knowing that you don’t have all of the information, that you might never have all of the information, but that somehow you have to make enough sense of what you know to get her the support and treatment that she needs to live her best life. 

I see you. I know it's hard. I know you are doing the best you can.

I'm sorry I can’t be there to fight with you, to worry with you, to cry with you, to drink and watch mindless TV with you, but I want you to know that I see how hard you are fighting to make it through every single day. I'm proud of you! You are amazing. Stay strong. You are not alone. I’m right here fighting with you.