Open Letter Weekend

This open letter may not be of the usual ilk, so bear with me. It's been an exceptionally long week, and long weekend, so I'm not feeling prickly or perky or funny or any of those things that make for a good, fun open letter. I prefer that sort, but tonight you get me as I am, which is this:

And Open Letter to Parents of Neuro Typical Children, and Parents of Children without Major Medical Issues:

I understand. It's a mama law. Where one is standing feels like the clearest place in the world, even when it is difficult. One's own struggle feels like it is the most important, and one's own experience feels like it is somehow both linked to all others and somehow completely unique. I understand the reflex to compare children, to compare experience, to relate the experience that you are hearing from another parent to your own experience as a parent, or to a parent that you know, or the parent you saw on a TV show. I understand.

I beg you to stop.

As the parent of one child with Asperger's Syndrome and hyperlexia, and another who wears contacts and/or glasses due to surgeries in his first few weeks of life to remove congenital cataracts, I plead with you to stop. My struggle with their issues is my own, and I admit that I feel like it's the most important thing in the world. Their struggles (and my own) feel like they are connected to all other children's issues and also unique. Both of these things are true, but we are living a different life that you genuinely can't understand. It's OK. We are OK.

The thing is, it's been a long week. Potty training an almost four year old boy with Asperger's is damn hard. Potty training is never fun, I know. There is SO MUCH poop, why doesn't anyone ever get real about the poop? But here's the thing: even though Henry is very high functioning, it might take years to potty train him. Please, please stop telling me that "you've never seen someone wearing diapers in his dorm room!" because the reality is that there are autistic people who are not toilet trained at sixteen. There is so much neuro-typicality baggage in that one statement that I have heard countless times since Henry turned three, I can hardly unpack all of it. It's time to step back, and just let us work through this one. If your kid is potty trained, I'm so so so glad for you. Please, unless I am asking, don't tell me more.

I sometimes wonder if I am the only mama with an ASD child that feels like the weight of the world makes my connections with other parents far more difficult. I've come across some amazing blogs by mamas of ASD kids recently that have helped me cry, embrace some of the emotional weight I am carrying about, and realize that while isolated in some ways, I'm not alone. My world has shifted, but if you are a mama I love with a neuro-typical child, please understand that I love you to bits and pieces; I just have fewer pieces of myself to hand about right now. I still need you in my life, I still miss you. I'm just juggling so much with therapy and everything else that the thought of trying to explain all of this every time it comes up is, well, overwhelming.

And at the same time, I feel the weight you must when it comes to talking to me. How many times have I thought "How lucky I am to have two beautiful boys, who are doing so well, and who don't have a major medical issue that requires full time nursing care?" or "How lucky I am that my children can move on their own and feed themselves?" I shouldn't feel like my issues are the worst, because I know that they aren't. But, I am every parent. My children are the center of the universe. It's a mama law. It's OK. I understand. I do.

With love and care,
Virginia