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.

Thursday, November 28, 2019

Ten Words

"Stow, I got it. Just sit down and shut up."

On the bus ride home from school on the first day of October, Stow heard these ten words from the bus aide. The exchange was observed by another aide, reported to the principal, and responded to immediately. And, in the scheme of things, in a world where so very many bad things can happen to a kid, being told to shut up can seem insignificant. Somehow, though, this became the precipitating event to what has turned out to be another challenging fall.

I was there to meet him when he got off the bus that day because Ren was still very much in the throes of his post-op recovery and couldn't handle Stow on his own. When Stow got off that day, he explained that something bad had happened to a kid and that somebody was going to get into trouble and that it was ok because another grown up had dealt with it. It took three or four tries for me to get enough of the story from Stow to understand that the something had happened to HIM. Once I felt like I had a handle on the story--he was trying to help the bus aide on his special needs bus by telling her what to do and she told him to bug off--I sent an email to his IEP team. It was probably one of the shortest messages I've ever sent an IEP team.
Stow got off the bus upset because he says the bus aide told him to "shut up" and that he was annoying. Obviously, this is highly problematic, and we’d like to get to the bottom of what’s happened and the situation on the bus.  
Almost immediately, I got a call from the principal. He'd heard about the incident from the aide and called me as soon as his afternoon bus duty ended; he hadn't even had time to see my email. Our conversation was short. He assured me that they would act quickly to address the situation. Stow asked to talk to him, and when he did, the principal told Stow how sorry he was that someone had treated him like that and promised that everything would be ok.

I hoped and believed that it would, but fall has always been hard for the boys, and everyone who works with Stow knows how fragile his successes can be and how quickly he can spiral.

Day 1

The next morning, the aide was still on the bus. Sometimes things don't happen as quickly as we'd like. It took the bus company some time to find and review the video of the incident and then a little longer for them to find a replacement aide for Stow's bus. It broke my heart to see him get on the bus that next morning and to see the offending aide not even greet him. 

I tried asking him if it worried him to have the aide on his bus, and more than once, he said it didn't. I am sure that it's true that he didn't think it bothered him. But, what is also true, is that starting on October 2nd and for weeks now since, he has struggled behaviorally at school. Before the bus incident, he had day after day of truly positive behavior charts. In fact, not long before the incident, we'd met with his IEP to discuss scaling back some of his supports because he was doing so well. 

Stow rides the "short bus" because he finds it hard to manage the social aspects of the "long bus." On the long bus, kids get into conflicts and the driver yells. A kid like Stow can make terrible choices in that kind of setting, and the drivers aren't usually equipped to support a kid who struggles. Ironically, the very thing we were trying to avoid by having him ride the special needs bus not only happened but also triggered every anxiety he has about getting into trouble for trying to help. He can't articulate any of this; in fact, things like this remind us of how much of what he experiences/feels sits just outside of his ability to comprehend.

It seems unfathomable that something as little as this moment of impatience and a failure to self-censor could derail a kid so, but Stow's teacher and I both keep track of his behavior (because behavior MEANS things; it ALWAYS means things), and it has steadily worsened starting with the bus incident. At this point, we find ourselves in unchartered territory given the struggles he is having at school, and though his team knows Stow well, they can't figure out how to get him back on track.

This is autism, you guys. You figure out what works, and for awhile it works. Sometimes it works so well that you feel like you've unlocked finally cleared a level in the video game called Life With Autism. And, then suddenly, the littlest thing can send you right back to the beginning. For those of you out there dealing with these kinds of challenges or worse, hang in there! We’re with you!!