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.


viviane said...

There are, and there will be, better days, but thank you.

Mom on the Edge said...

Yes. I agree completely. We have a lot of good days, but those days when this feels so very hard, we need to know we are with each other in spirit!

csojc said...

Thank you.
My son (7, year 2) is having his first experience with school not understanding and casting him in the "naughty" role because they've completely failed to consider his needs. It's heartbreaking and enraging all at once.
My daughter (5), who finally got her diagnosis in term 4 last year, is in prep and struggling with the social side of things.
I'm trying to navigate their minefields for them, and mine for me, while also organising my mother's application for disability support and staying sane. My neurotypical husband is trying to understand all of us.
You get it. Thank you.