Monday, November 20, 2017

Dear Parents of Kids who Didn't Come to My Kid's Birthday Party

Dear Parents of Kids who Didn't Come to My Kid's Birthday Party,

I've got a problem. It's been bugging me for awhile (for the past 9 or so years since I started hosting the occasional kids birthday party), and I just can't seem to solve it. So, I thought maybe it would help to create a guide to how to RSVP to an invitation.

Before we go any further, did you RSVP that your kid couldn't make it? Yes?  In that case, you don't need to read beyond this paragraph. We appreciate that you RSVP-ed in a timely fashion. It helped with planning to know you wouldn't be able to come. We were sorry to miss you but know people are busy.

What? What's that you say? You forgot to RSVP? I'd like to tell you that's ok. I really would. But, see, your kid told my kid he was coming to the party, and without your RSVP, there is no way for me to know if that's true or not. Sure, I can tell my kid to remind your kid to remind you to RSVP, but really, do you think that's going to happen? If you're someone who forgets to RSVP, somehow I imagine your kid might also have a hard time keeping on top of that kind of thing. And, even if your kid didn't tell my kid they were coming, my kid still believes everyone is coming unless the RSVP tells him otherwise. So, please, just send me a text or an email. It's fine if you can't come. Hell, it's fine if your kid hates my kid. What's not fine is not RSVP-ing. How are we supposed to plan or manage our kid's anticipation if we don't have any idea how many people are coming?

You RSVP-ed "yes" but then found out you couldn't come? That's no big deal. Schedules change all the time. Just let us know; we can adjust. But, you know what's not easy to change? It's not easy to change the fact that my kid's feelings got hurt when you said your kid was coming and she didn't actually come. Sure, I can make excuses about the weather or about people being busy or about people not being good with email, but she saw your kid at her friend's party, so she doesn't buy it. Instead, she believes it's because your kid doesn't like her. And, maybe your kid DOESN'T like her. It happens. Most of us have people we don't like. But, it seems extreme to say yes to an elementary school birthday party invite and then no-show just because your kid doesn't like mine. What? Your kid doesn't hate my kid? Then, why in the world would you break her heart like that? That doesn't make any sense at all!

Look, here's how this works. Someone plans a party, and as part of the planning, they decide who they want to invite and send an invitation to that person. The invitation has a lot of useful information like the date and time of the party and the location. It also has contact information so you can let the person throwing the party know whether or not you can come. If you don't quite know your schedule, you can wait a bit to respond, but really, you should let people know at least a week or so before the party so they can plan. It's okay if you can't come, it happens all the time. Just say so when you RSVP. And, if you RSVP "yes" but then learn you can't come, it is MUCH better to let the host know things have changed. I mean, they will notice that you're not there anyway, so what does it hurt to give them the head's up?

And, of course, if all of this is happening in the context of a child's birthday party, please think about how you would like to have your own child treated (honestly, I can't believe I even have to write that last sentence). Kids LOVE their birthday parties. They talk about who they will and won't invite for months before the party. Sometimes they tell each other these things at school. Sometimes they can be pretty childish about the whole thing. But, you? You're not a child; you're an adult. You have access to a phone, a computer, and a car. If your kid doesn't RSVP or if your kid says they're going to come and then doesn't, it's on you, at least until they're old enough to text/email and/or to drive themselves to the party.

I know you probably think I am overreacting here, but we have thrown many parties over the last 9 years, and elementary school parents are by far the worst at RSVP-ing. I've sent Evites, emails, paper invites, and texts, and I routinely only receive RSVPs from about 50% of the people we invite. And, every party (Every. Single. Party.) we have at least one, and sometimes more than one kid who says they are coming and then doesn't come (and doesn't let us know they're not coming). Have you tried to explain to your kid why only 1 of the 4 people (or 2 of the 6) people who said they were coming didn't come? Because, no matter what you say, all they believe is that the other kids don't like them. And, then, when the go back to school the Monday after the party, they see those kids and they worry about whether they're friends anymore. Even when my kids tell me they don't care about this, they are lying--usually to try to make me feel better since they know how much time and energy we put into getting ready for the party (which is really, really sweet but also heartbreaking in its own way).

So, I don't know. You guys tell me what I'm missing here because in the world I live in, it's proper etiquette to RSVP and standing up a child on his/her birthday is just a shitty thing to do.



Friday, November 10, 2017

A Post at 4 A.M.

They say if you've met one kid on the autism spectrum, you've met one kid on the autism spectrum. In other words, no two kids with autism present in the same way. Seven years ago (almost), as a parent of a newly diagnosed kid, I found this truth to be especially galling. Friends would introduce me to acquaintances with kids on the spectrum, but our conversations would hit one dead end after another as I tried to figure out how I could learn from their years of experience when there seemed to be so little that our kids had in common. That's how I ended up on the internet and why I started this blog. Parenting a kid with autism felt a lot like shouting out into the void.

In February, Stow received an autism spectrum disorder diagnosis, too. While I wasn't surprised given all the ways he has struggled and the various developmental delays that he continues to wrestle, I also wasn't sure I believed it. I mean, Stow's behavior and struggles seemed to look very little like Sky's. In fact, despite the fact that Stow showed various delays, his issues didn't present themselves enough like the autism we knew to convince us to seek out a formal diagnosis. And, presumably, we should know better. We're already autism parents. In February, when we went to the neurologist, we weren't looking for or expecting ASD. But, that's what we got.

Since then, I've started to see it. It looks SO different than Sky's, but I am pretty sure it's there. Currently, we're in the process of getting a second opinion in the form of a very thorough evaluation at one of the leading autism centers in the country, which will help us better understand all that is going on. Will they also diagnose Stow with autism? I don't know. I do know that they have already diagnosed him with a significant expressive and receptive language disorder. And, the sensory processing disorder continues to "stick." Early next year, he will get the final phase of the eval done, and I suppose then we will KNOW. But, do we ever really know? And, does it really matter? I suppose the diagnosis changes nothing. The struggles he has will continue to be the struggles he has, and second-opinion diagnosis or not, we will continue to work with him to manage those struggles in the best way we know how.

So, what's my point? Actually, none of the stuff above is my point, really (Sorry! I'm working on little sleep). My point is that this is hard. It's hard for all the ways I've talked about before--the meltdowns, the inflexibility, the unpredictability, the chaos, the interventions, the therapy appointments. And, it's also really hard because it takes a long time to figure out what is going on, and even as we are trying to figure it out, we still have to go to the mat for our kids and push back against teachers, strangers, and often even friends and family who don't understand.

For the first four years of Sky's school life, we had him in a private school (the best of our options at the time) that did not offer special education services. Every single day, (EVERY! SINGLE! DAY!) I was at the school talking to his teachers about one issue or another. Once he got the diagnosis, I had the words for what I was trying to tell them, but even though I was still learning what it all meant myself, I advocated for him daily and made sure they understood why he did what he did and accommodated him accordingly. Then, I got the job I have now, and we moved to an area with excellent public schools, and for the first time as an autism parent, I got to see what the right amount of accommodation by teachers who understood ASD could do. You can read posts here, here, and here (not to mention here and here and here and here and here) about the struggles we had with Sky in school back then. And, you can notice that I rarely talk about school any more. When schools handle special needs right, there's not much to write about. Stow does a lot of the same things Sky did in school at the same age, and because the teachers and the principal know how to handle it, I don't have to explain to them about sensory seeking behavior and poor social skills and intentionality. There are 7 people on Stow's IEP team who "get it," and just like that, my life is 1000 times easier than it could have been.

But, there are still a lot of people who don't get it, and I'd like to be able to tell you that I don't care about them anymore. On some level, I guess, I am so deep into parenting kids with autism, that I'm oblivious to the stares and the judgment of strangers who can't believe I "let" my kid hit me or that I give my careening pre-teen a device to calm him down despite the fact he's being "a baby." What still bugs me, though, is when people who know us question our reality. After all these years, I still have friends and relatives (some of them quite "close")*** that believe our kids' issues lie squarely in our failure as parents because we just don't discipline our children well enough. There are still people who know us well (enough to know better) who question why we need to make accommodations--things like not trying to do too much in a day or keeping a pretty steady routine or sticking as closely as possible to dietary restrictions--and who assume it's because we have raised three fragile (entitled? selfish?) snowflakes. I don't know, you guys; this sh*t is hard enough already. Wouldn't it be heavenly if we had lives full of people we love and care for who care for us and love us where we are and for who we are? These days, I'm working hard to see if I can't make that happen for my family and for myself. And, to be honest, I think, maybe, this might be the biggest challenge on this journey.

***For the record, if you're reading this blog, I am probably not talking about you. There are many people who struggle to know how to help or what to say, but they are trying and we know they are trying. Trying means a lot to us!