Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Friday, May 19, 2017
7 Things I Wish Parents of Neurotypical Kids Knew, or I Hate Change, Part 6
Yes. It's a ridiculous title. But if I'm blogging anyway, I might as well rejoin the Friday 7 thingies group, right? If this is your first visit to my blog, you can read Parts 1-4, if it interests you, by clicking on the links to the right.
1. When I look at your children in longing, it doesn't mean I want your children. I love my children. But there are many times when I wish I had your problems. Neurotypical children do not regularly shred their clothes (either because "it's touching me!" or it's the closest thing to fiddle with and I've already chewed up my pencil), wear noise cancelling headphones every time we leave the house (sometimes I could live without the billboard over our heads screaming "AUTISM! AUTISM KID RIGHT HERE!" I mean, this blog is called Passing for Normal), or stamping around the backyard while reciting Green Eggs and Ham for the 3 trillionth time (I'm not even kidding about the 3 trillion and, thankfully, I have very kind neighbors).
Miranda's issues are milder but still very specific: she just recently went into a clothes changing room for the first time in her life to actually try on clothes before buying them. Previously, I would go out and buy something and bring it home. It would sit on the floor for 3 days until I could beg her, while she was changing her clothes anyway, to try it on. And if it didn't fit, I would take it back. She didn't wear jeans until 3rd grade because she hated the way they felt against her skin. I haven't put tights on her since she was 18 months old and I'm kinda scared to try.
2. We don't really do playdates. Both kids get along with their cousins and other dear friends we consider extended family, but for Miranda to have a friend to the house means we have to explain about Alex (although she is now old enough to explain to her peers what autism is and what he is like) and prepare them for him to float in and out of their playing. I have left Miranda alone at a school friend's house 3 times in her life and she's ten years old. It's risky. She's impulsive and still has difficulties reading social cues. And sleepovers that are not at Grandma's house are out of the question until she can reliably take her own meds.
Alex doesn't have a lot of friends. One of the greatest things about Archway has been his development of a best friend. He realized several years ago that his classmates weren't actually his friends and he refused to call them that anymore, even though that had been accepted previously. But now he has a BFF; life is good. I've never met the boy's parents and have no idea where they live, but they are at school together and that's enough.
3. Going out to eat as a family is not going to happen, maybe ever. Miranda can now safely be taken to a diner or other casual dining facility because her father has trained her over the last 2 years about what the expected behavior is at such an establishment and she's decided she will eat certain things at restaurants, like the chocolate chip pancakes her mother refuses to make for her. Alex only eats 8 foods and the smells and sounds of most other foods upsets him (don't even try to eat an apple in front of him; he can't stand the crunch). We did manage to take him to a taco place in San Antonio in 2016 where he had tortilla chips for dinner but I think that was because he was so tired and hungry from hiking through underground caves and we were all together with our friends.
In previous years, he did a summer program at school that planned activities for special needs kids "in the wild" on purpose to help familiarize them with the outside world. Several times, this included a restaurant. The teacher ordered pancakes for him, because they were something he usually ate, but he was irritated to be asked to eat "foreign" pancakes and so he took a bite and then purposefully vomited the bite back into her lap. She cleaned it up, scolded him and told him to eat the rest of his pancakes. Special education teachers are made of stern stuff; just think what the world would be like if they ran it?!
4. Miranda is convinced she is the only kid in her class who's never been to Disney (it's a big thing here in Jersey). I'm not sure that's true but it's probably closer to true than it was 3 years ago. When Alex was younger, we expected that if we waited long enough, he would mature enough to chance the massive expenditure (BTW, I grew up going to Disneyland so I am a lifelong fan). Now we're wondering if just taking Miranda would work better, but he understands what Disney is now (thank you, YouTube commercials, for that) so I think he would be disappointed. Although, I'm told that the Fast Pass thing might go a long way towards helping a kid who hates waiting in lines. (Not that there are kids who like waiting in lines, but some kids tolerate it better.) Still, it's not on the near horizon.
5. My kids have never had a moment of seperation anxiety in their lives and "Stranger Danger" is completely preposterous to them. They truly believe that every person (child or adult) they encounter is already their friend, wants to talk to them and is perfectly safe. I'm sure part of this is because they are rather sheltered because we don't take them a lot of new places because, well, new things are hard. As you may already know, part of being on the autism spectrum means you have tremendous difficulty reading non verbal social cues and the adults responsible for you hardly ever leave you alone because, well, impulsivity is a thing. I'm not sure how Alex has never electrocuted himself by chewing on power cords; it's a miracle. Miranda managed to shock herself pretty well by putting my metal meat thermometer into a open light switch but also, miraculously, came away none the worse. This is when I worry about helicopter parenting, because if I'm not there, they might actually try to kill themself accidently by jumping off of a tower, walk off with a sex trafficker, or be perfectly fine.
I still remember the first time Alex realized that the kids at the park didn't want to play with him. It was about 2 years ago and it absolutely broke my heart. They were not rude; they were just playing with their friends. Miranda is still able to make younger kids into her pets at the park, which is easier than playing with her peers, anyway. But now that he's 13, Alex is pretty much done with going to the park, except for occasional trips. Sigh. We have a lot of good parks here.
6. Leaving my children with anyone else is complicated. They each have a specific schedule of medications, morning and night, prefer certain foods at certain times and morning routines need to be followed to the letter. But they can dress and shower themselves now, mostly. Bottles of shampoo still disappear mysteriously down the drain, and the guilty party could be either of them. A few weeks ago, Alex "washed" his hair with 3 handfulls of conditioner. I had to help rinse it out.
We went away for a weekend in March and even though I was leaving them with my parents, I left them nearly 3 pages of instructions and when they had a babysitter for part of Saturday, I left her 2 pages as well. Most of the time, it's just easier to do it myself.
This is not to say we never go out (thank you, grandparents, because you are wonderful!) or we didn't have other babysitters when they were younger. We did. It just takes a lot of work to get everything ready. And it was years before I really felt comfortable leaving. Now, since my children love everyone and Alex thinks that every single person who comes through the front door is there for him personally, they have pushed us out the door for years. Mommy is reliable, but Mommy is boring. And she makes you clean your room.
7. My job is hard. Please do not pity me, but empathetic listening is always welcome. And, honestly, I am happy to talk to your sister/aunt/roommate/second cousin thrice removed if they have a child they suspect is on the spectrum. Give them my phone number or my email address. Truly.
There were many, many special needs parents that I didn't know but who knew my parents or my pastor or my friend who talked to me and helped me through some really, really tough times. And I don't care if it's a one and done conversation. You don't have to friend me on FB or call me with updates. If you need help right now or next week or next year, I'm right here.
And here's Kelly.
Posted by Sarah Boyle Webber at 9:13 AM
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