Expectations While Visiting the Spectrum

 

The online autism community definitely makes us feel more normal around here. The truth is, most of the parenting experiences I read about on social media come from that community. I get a daily dose of it- and it does make me forget once in a while that most families are not like ours.

Of course, we don’t really know many people personally who understand autism; and we do have to leave the house some time. I have gotten so used to hearing from autism parents online, I have to remind myself that the majority of people I encounter in the real world know next to nothing about autism. People are filled with wrong ideas about autism. Or no ideas at all. If it is not a part of their world, who can blame them? 

Friends and family will attempt to know things. I may be their only resource (sorry about that). And then there is the confusing fact that no two kids with autism are alike. So they make assumptions about Teghan that don’t apply to her. Or they make assumptions about other people based on something that only applies to her….

Ugh. It’s a little much to try to educate the whole world. It’s okay. I don’t mind people not knowing things. I don’t think I have huge expectations for others. Don’t get me wrong, there are plenty of people who do have huge expectations- so you had better do your research if you are a people-pleaser. But I will do my best to defend you. Good intent goes a long way with me. I do not get offended easily.

So I was thinking about what really bothers me the most. As in what lack of knowledge from the general public makes our life the hardest. And you know what I came up with? The most difficult thing we deal with are Teghan’s encounters with other children. We are very afraid of places where children can be found playing. This includes playgrounds, Chuck E. Cheese, and any parties with children in attendance. I don’t mind explaining Teghan to other adults. It’s easy enough. I could talk all day, even.

But I hate trying to explain Teghan to other people’s children. I know, I know. But hear me out….

Next to the playground. The leaves in the puddle were way more exciting.

Next to the playground. The leaves in the puddle were way more exciting.

For example, we recently had an unusually nice day for January in Michigan. We thought about taking Teghan to the park. I am not even sure why we do that. Teghan seems to like it a bit, but after a while she just wants to run into the woods, field, or whatever surrounds the play area. It’s fun for us, I guess- for the brief amount of time she acts like she might really enjoy that slide.

But she is oblivious to other kids. Occasionally she will show some interest in an older child, and that freaks us out. Her interest will result in touching the child’s face or hair or something. And she doesn’t talk, so immediate intervention is required. But mostly she acts as if the other kids are invisible. And for her sake, we are fine. She is also quite happy to be ignored.

She has rituals. She likes to run back and forth. She doesn’t try new things easily. Before she can go down that slide, she is going to need to almost go down the slide about fifty times. If the playground is busy, she gets in the way of other kids. She’s very little and cute- so most of those kids are forgiving, even helpful. Sometimes they want to help her down the slide. Or invite her to play with them.

She doesn’t understand, and she cannot talk. This means that we must explain this to the other child. I hate it. I hate it so much. Something about this breaks my heart. Maybe it’s because we only have to explain it to the nicest kids- the ones who try to be her friend. Maybe it’s because we have buried our dreams of what normal five-year old friendships look like deep, but not deep enough. Or maybe it’s because it is so hard to explain autism to a child who has never been taught anything about autism.

The other child never understands. They understand that she can’t talk. But she isn’t deaf. It involves a bit of knowledge about social behavior, and your average adult doesn’t always grasp that concept. Telling a child that another child simply does not understand how to play or interact socially requires a little elaboration. Most kids are eager to learn more, and we are happy to answer questions- but doesn’t anyone teach their kids about this?

So I guess I do now have an expectation  of others. Teach your children about social disabilities. Take time to learn enough about autism for a discussion with your child about what it is and what to expect. They are going to encounter children like Teghan, or a verbal child who is higher functioning. Maybe there won’t be someone there to explain why that child ignored them or acted in a way they didn’t understand. They may respond with cruelty or maybe just hurt feelings. They want to understand, so why not teach them?

You would really be helping out that other parent, too. I wouldn’t mind telling ten different kids that, “we are sorry, but she cannot talk. She has autism,” if that were enough. If only a child would say, “oh, I know what that is,” and go along their merry way- things would be great for us. Or if they just wanted to know more about Teghan’s situation without a whole lesson on human social behavior that I have no business explaining to your kindergartener. Because sometimes kids have a lot of questions- and our kid never has questions, so we aren’t always prepared.

So that’s the one. The one area where a lack of knowledge about autism affects us the most. I am always open to questions. And if your kid knows nothing about autism and pins me down for the answers out on the playground- I am not really going to think any less of you. But if you are the parent of a child who is not on the spectrum, and you are looking for a way to make an autism parent and child’s life a little easier- consider a lesson with your child about autism. That’s all. It would greatly benefit your child and mine. And it seemed worthwhile enough to mention.

 

6 thoughts on “Expectations While Visiting the Spectrum

  1. Lily just wailed on a kid the other day at an “Autism Friendly Playground” event. On the one hand there was a feeling that…”these kids get it. Whether they themselves are autistic or they are the siblings of an autistic child…they get it.” And there was a feeling of, “the parents of the kid get it.” But the kid she hit was little little kid. And she did NOT get it. And it was icky.

    Still…we try to capitalize on our charity’s events to mix and mingle with others who understand and are more likely to accept without judgement…

    • It is more comfortable to be around people who get it. When I took Teghan to our local autism walk it was fantastic. On the other hand, autism night at Bounceland left us all scarred for life. Teghan got stuck in a tunnel with a kid who sat on her and used her as a punching bag because he couldn’t stand how long she was taking. I had to pull him off of her. She was hysterical.

      And you know what? I was very understanding. Not that the kid’s parents would know- since when his dad saw what happened he grabbed his kid and ran instead of waiting to see if we were alright…. But I don’t think we will be attending any more events at Bounceland. Sometimes the kids who are just like her actually understand her the least. We now pick our events more carefully.

      I am grateful that I don’t have to do any explaining, though.

  2. Thank you. We go to lots of events with our local NAS (National Autistic Society- don’t know if it is called the same in America), and tend to avoid most other things as our daughter needs so much more support and supervision than most children and it is hard-going to always explain to adults and children.

    • It’s hard to avoid. Kids are everywhere 🙂 There have been times when I was sick of explaining and didn’t want to anymore so we just left. We have actually never taken Teghan to many places most parents frequent regularly, but some parties are unavoidable. And we do, of course, look for playgrounds that are empty….

  3. Jenny, I know it isn’t the same but I have read a blog titled, “please tell your kid about adoption, so I don’t have to” they have some parallels in that people don’t really understand and have lots of questions.

    But thanks for this post, I will tell my kids about it, I have been neglectful in that area.

    • I imagine it could be harder in many ways, since the burden of explanation would often fall to the child to handle. Teghan is unaffected by kids having questions, that’s for sure. I know I never really thought about some of these things before, and may have also neglected preparing my children. Most parents get around to talking about how people are different, and even cover the more obvious, physical disabilities. But these days there are plenty of situations that kids are confronted with that I am sure we would rather have them learn about from us. Thank you!

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