This is our second mini episode. We talk about child and disability shaming (especially through children’s books) as well as parent shaming. We also discuss the sad fact that some providers for children with special needs do not accommodate for the extra needs of the children when scheduling appointments or making sure the children can be seen in their office.
Jessica: This is Jessica,
Lewis: and this is Lewis.
Jessica: We have a preschooler and a toddler. Our children are a different kind of perfect. This is a show about surviving Parenthood throughout raising children with special needs. Well, keeping ourselves at our sanity intact. This is FUBAR surviving Parenthood with special needs kids. Hello everyone.
Jessica: Welcome to FUBAR surviving Parenthood with special needs kids. This is your host, Jessica. I’m alone again today. We’ve got some sick kids, so I’m just going to do a little bit of a mini episode about some things that I’ve been noticing lately. So today I wanted to talk about shaming in general.
Both parents shaming and also shaming of the child with special needs. This is an issue that’s been on my mind for a while and I wanted to talk about it. Alex had a birthday relatively recently and a family member was kind enough to gift us a book and it looked really cute. It had, at least on the book, it said it was a number one bestseller.
She’ll like, Oh, this’ll be really cute. The book is called the wonky donkey. And it said it had a song, it sounded cute. And then you open up the book and one of the things that happens is a bird sees a donkey that has only three legs, and they call it the wonky donkey. It goes on to say that he only had one eye.
Now he’s a Winky wonky donkey, and it keeps going on. And this poor donkey who has a disability is shamed for having one eye. He shamed for only having three legs and they talk about his bad taste in music. They talk about how he’s too thin. They talk about how he smells really, really bad, and they’re just shaming this poor donkey who’s got several disabilities and it’s supposed to be a funny book.
And I just, it horrified me after we got about three pages in Lewis and I just took the book and hit it because it was so horrifying that. The book is shaming this poor tonky for having a disability, and I understand that the goal was to be funny. And to rhyme and to be a kid’s book with pretty pictures.
But what kind of messages this sending for people? It’s essentially saying it’s totally fine. Make fun of people with disabilities because it’s funny. We can make a joke out of it and these people are funny and we’ll get a laugh at their expense. And that really doesn’t sit well with me. And this poor donkey doesn’t even realize that he’s being shamed. This whole book that nobody’s talking to him and everyone’s just making fun of it. I don’t know, it just, it really rubbed me the wrong way, and I find that really upsetting because it’s a, it’s a board book. It’s a book for little kids, so we’re starting them young with shaming people with disabilities.
I dunno. It really bothered me. And then we took the kids to the library last weekend and we found Amelia Bedelia books, and I loved Amelia Bedelia books as a kid because she’s very literal. She always gets things wrong, and it’s funny to see what will happen next. So I was reading one of these books to Benji, and I realized, you know, does Emilia, but Delia have high functioning autism?
She’s very literal and she always gets things wrong because she does what she was told, literally, and I realized, you know, I was, as I was reading it to Benji, he didn’t understand any of the jokes because he was taking it literally. And then I realized, well, kind of the point of the book is to laugh at Amelia Bedelia and how she gets everything wrong and she just doesn’t get it.
And again, it goes back to shaming there, shaming Amelia Bedelia for having a disability. Or for being different and you know, again, again, it’s supposed to be funny. I thought it was funny as a kid, but if you think about it from the point of she might actually have high functioning autism, it’s really no longer funny because they really just are making fun of her.
Onto parentshaming, and this is an issue that has been bothering me for a long time. We really do love the school that we send our kids to. We’ve had great experiences and the kids have been really thriving there. They’ve really come out of their shell and are doing quite well, especially Alex, when he was going to the school that he attended before this, that he’d attended since he was very little.
He really wasn’t doing anything. He wasn’t interacting with us very much. He didn’t seem to have any energy. He didn’t play a lot. And then as soon as we started the school, he just really came out of a shell and he did amazingly well. So again, we really like the school. However, I’ve been having an issue with one of the teachers because I really feel like she’s mom shaming me.
We had several issues, so she keeps telling me what I should and shouldn’t do with Alex. She’s telling me how I’m doing this wrong and I need to be doing more of this and less of that. Her biggest pet peeve is the food that I send Alex for lunch. There are a few food restrictions that I won’t get into on this podcast, just for anonymity purposes for the kids, but it has to only be dairy types of foods.
It has to be nut free. And, and now the teacher saying, well, he has some teeth, he’s past the stage of purees, so you need to start sending him finger foods. So there was one day that I didn’t do that. And he didn’t eat very much, and she said to me, well, you need to start sending him better foods because he didn’t eat well today.
And it was a day that I was having a lot of trouble emotionally. It was just a really, really hard day for me. And I said, you know, we’ve been really struggling. I’ve been doing most of the parenting types of things, and some days I just can’t get it right. I do the very best I can. My husband had been struggling on his own. So he hadn’t really been helping too much with certain aspects, like packing the kids for school. And I said to her, you know, I’m doing this by myself right now. And she turned to me and she said, well, you have to be really gentle with Louis because he works full time.
And I looked at her and I said. But so do I. What does that have to do with anything? We both work full time. Why are you shaming me about it? I don’t understand. And since that time, she has continued to shame me for the foods that we pack him. The problem is he has six teeth and he doesn’t feel comfortable eating solid fruits or vegetables. We can’t send in meat. It has to be nut-free and she doesn’t want it to be a puree, which really, really limits what a one year old will eat. At home, he has a very wide variety of things he’ll eat and he is absolutely a carnivores, so he eats a ton of meat. He does like nut products.
He, he has a lot of things that he likes to eat. So he gets a really wide variety of foods at home, and because we’re okay with giving him purees, he gets plenty of fruits and vegetables. It’s really not an issue. But at school we’re very limited and. I also don’t know what he’s going to eat because young children, as you all know, change what they like to eat approximately every five seconds.
So I can guess what he’s going to like that day. And maybe he did like it that morning, but now he doesn’t. And I can’t send the entire refrigerator and freezer to school with him. So. I have to do the best I can with picking what I think he will eat that day and what he can eat and what he feels comfortable eating.
So she said, well, what about tofu nuggets and what about vegetable burgers and this and that? And I looked at her and I said, he’s not going to eat that stuff. I know my kid, he’s not going to eat that stuff. So she gave me a laundry list of things we should get, including the veggie noodles and all sorts of stuff.
So I said, fine, I’m going to rage grocery shops. So I went to the grocery store and I got $40 or more, I can’t remember, full of lunch foods specifically for Alex. And I sent the foods with him the next day and wouldn’t, you know, he ate nothing for lunch except for the Cheerio’s that they’d had from the day before.
So ever since then, I’ve been trying to send things that I know he’ll like, but are finger foods. But the problem is, as you’ve heard in past episodes, we’re struggling for money. These disabilities are very expensive and. Now having to do all this extra shopping for things that she thinks he’ll eat is really hurting the bank and every day, no matter what I do, no matter how good I think a lunch I’ve packed, I get the shaming, I’m doing the wrong thing, and I’ve really had it.
I’ve absolutely had it with the mom shaming, can you just teach my child, keep him alive? How about that? Let’s, let’s lower the bar. Keep my kid alive. Do not be the parent. I’m the parent. I’m a very capable parent. So as Lewis let us parent you, do you stop with the shaming? This next part is adjacent to parent shaming and.
It really doesn’t fit in, but it really, really bothered me this week. So a good friend of mine has a son who they have concern, might have autism, so he’s been struggling for months to schedule an evaluation for him, and they finally had an evaluation scheduled. Unfortunately due to insurance and also wanting to make sure that this is an accurate evaluation.
The only place he was able to find was about an hour drive, so he took off of work. He took his kid out of school and drove an hour to this evaluation. However, even though he left plenty of time to get there, he was still late for the evaluation by, I want to say about 20 minutes. Cause he had tried to call to let them know that he was late and nobody answered.
So he left messages, but there really wasn’t anything else he could do. So by the time he got there, he was told that they’d waited long enough. The doctor had left and he would have to come back another day. And. I was horrified. I was so upset, so angry for him. And it’s not even my kid because here is a parent who’s trying to get their child evaluated for autism.
And this doctor couldn’t wait 20 minutes. This was at least a half day, if not an all day evaluation, and she couldn’t wait 20 minutes. You know, I’m a neuropsychologist and sometimes I will, I will, I’ll wait an hour before I call it a no show. But to just wait 20 minutes, especially if she didn’t have patients for hours later and think about it if, if the child does have autism.
You can’t guarantee that they’re going to get in the car. They might run away or elope. They might have a meltdown. What if they’re trying to potty train the child and it’s taking longer than expected. What about when they have feeding difficulties? For us, it takes Benji an hour and a half to eat meals.
Some days it’s less like 45 minutes, but usually it’s an hour and a half. You know what if, what if there are so many issues that could have been going on, especially for a child who possibly has special needs and they’re not going to accommodate for that. I don’t get it. This is a clinic, a very well known clinic that specializes in children with different needs and for them not to accommodate.
Something basic like that that is honestly to be expected. But the young children who have autism or might have autism, who have not had treatment for it, and to not accommodate that at all, and it’s not even his fault. He did what he was supposed to do. He made the phone call. Nobody answered. So honestly, that’s on them.
I was so upset because they’re supposed to know about special needs and essentially the doctor said, I’m more important. I don’t really care about accommodating for this child who needs these accommodations. I’m outta here. So I was just absolutely livid. So in conclusion, people really need to stop shaming.
They need to stop shaming people who have different needs. They need to stop shaming the parents because we are all doing an amazing job. No matter how hard it is or how much we think we’re failing, we’re doing an amazing job. It’s so hard. You know, it’s hard raising a neurotypical kid or a physically typical kid.
And we’re doing an amazing job. We really are. So we need to stop with the parent shaming and honest to goodness at clinics who deal with children who have different needs all the time. They need to be more accommodating. It’s absolutely ridiculous to not accommodate for someone who’s 20 minutes late, who did everything they could to get there.
Anyway, thanks for listening guys. And until next time, this is FUBAR surviving Parenthood with special needs kids. Well. That’s it for our show. To find out more about the show, please go to http://www.fubarpod.com. Check us out on Facebook with our FUBAR surviving Parenthood with special needs kids group and on Twitter at FUBARpod.
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Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org)
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Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2019 Jessica and Lewis Temple