“Have you ever thought about just telling her no?”

I’ll never forget the day. The hour. The moment. I have had plenty of moments since then but this one was a big one. I was with a mom group. They knew me well by then. They knew my daughter. They knew she was full of energy. Bright and extremely social. They knew for even being a toddler, she was impulsive. They seemed to understand. I was grateful for some semblance of socialization as a new mom to a new city. We met at parks all over the city. Most were really hard for us. It was near traffic, near dangerous areas, had super high climbing stuff that my toddler could and would climb faster then a blink of an eye. The others in the group wouldn’t think twice about going to these parks. I, on the other hand had to strategically plan for each and every dangerous scenario. I would map out the playground to figure out the best places for me to stand to make sure she was safe. Not because I’m a helicopter mom. But because I needed to keep her alive.

The group was sitting in a circle chatting. I was on top of a play structure with my child, making sure she was handling a social encounter with having nice hands. A mom from my group came over to get her child. We started talking. I explained that I would love to catch up but how that particular park was hard for us as it was so close to a busy road and my daughter had a mission to run. She stopped, looked at her, looked at me, and said “Tiffany. Have you ever thought about just telling her no?”

Damn.

Those words carry so much weight. So much meaning, judgement, and stigma. Did she mean it to carry the weight? Of course not. But it did.

Being a mom to a unique child can be lonely. Isolating. Social isolation is a real struggle with families of social needs kids. Reasons for this include but are not limited to care giver fatigue, they can’t find others who can relate, feelings of inadequacy as a parent which result in feelings of embarrassment when out in public, and having any down time or ability to make connections. They also may not be able to find other children who click well with their children. And especially when you have a sensory kid, that can make or break socializing. Because a sensory avoider may really struggle with a sensory seeking friend.

Sure, we would go out. We would “socialize.” I would pack up the car, find a safe place, try so hard to make friends. Try to meet people. Parents would be interested. My sweet daughter may run away, may react to something a bit differently then theirs, may push them instead of using words she didn’t have yet.

I would then panic, thinking, “ok ok ok Tiff. Behavior is communication. Parents may not know this. They will say it’s fine. But you know they don’t mean it. Do I let them think she’s a naughty kid or do I tell them she has special needs, which one is “worse?”

And whatever I said, didn’t matter. They would act nice, for a bit. It may happen again and they would have to leave. Or they would steer their kid away. Many were nice and even tried to get our number. We would exchange numbers. Maybe meet again. My child may have been a bit too physical. And I would get ghosted. And sure, life happens. But it’s pretty obvious that that played a big role.

None of this is my child’s fault. And it’s really not even my fault. We were trying our best. It’s that society is conditioned to steer clear of anything “extra.” We just keep our head up and have decided to build our village as we see fit. We pick and choose. I’m not actively looking for friends. I let them happen organically at this point.

At times it’s lonely because while being friends with parents of all different abilities and needs is what I strive for, many parents don’t understand my family. Especially me as a mom. They see me fighting for something that they don’t see a need for. They find me a bit “much.” They may not understand us or may be afraid to ask. They see me doing peculiar stuff at a park for safety and they may not see a need for it. They think I’m over reacting when by the looks of it, my child takes two steps (but I know what she’s thinking and I know what will happen next), and how I move to stay close to her. They don’t understand our synchronized safety dance. They think my child looks “fine.” They don’t have the same interest or hobbies then us because we’ve got other goals and abilities that we are looking to meet and manage.

I truly in my heart believe that these parents have no ill will or bad intentions. This is what we’ve grown up with. It has to do with their unconscious perception of who they want their child to be friends with. Or who they want to be friends with. That’s right. I said it. And you know what? That sucks. It’s not ok. And it’s something I’m striving to change.

Thirty years ago I remember a child running away from school. The teacher ran after him. She sat on him. The principal came. It was a whole thing. He was declared the bad kid. It was encouraged to stay clear. I think back to that from time to time. Elementary school. Being labeled the bad kid. Can you imagine? Talk about setting him up for failure. Talk about a missed opportunity to teach us a lesson of inclusion.

A better solution is teaching kindness to children. Explaining that sure, people will be different from you. And that’s great. Showing it yourself. Becoming a model for your kids. Not make belittling statements. Ask how you can help. Acknowledge that that mom may feel lonely on the playground with the rest of the group sitting down. And maybe go up to that lonely mom and strike up a conversation. Because we have a lot to say. And most of it is stuff we all have in common. Like lack of sleep and how kids only like carbs.

Even better? Stop judging other parents. Stop judging kids based on a small glimpse of them in public. Stop going onto social media talking about how you saw a “mom do this” or “child do this.” What is it to you? Does it make you feel better to post that? But I ask the question. What does it do to them? And an even bigger question, what’s it do to our ever learning and curious children?

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Come check out my video. It explains a bit more about me and why fidgets can be really helpful. I tend to not like to commit to purchases and for some reason get anxious about buying things that don’t work. For me, I like seeing videos of the actual objects working. I hope this helps! I look forward to making more videos. Probably not as long.😊

https://m.youtube.com/watch?v=1WbOQlwzjGw

#fidgets

#autism

#neurodiversity

#anxiety

#specialneedsmom

#autismawareness

#actuallyautistic

#ocd

A Fine Line

I’ll be honest with you. I find one of the hardest parts of being out in public is knowing when to push for accommodations because we would like to have the fun experiences too. Or to just realize there are rules and we must learn that we can’t always do what we need to and move on. I tend to feel judged both ways. If I fight for accommodations or to “let” us do what we need to do, then there is a ton of people who think that we’re trying to play the victim card. That I’m being “that mom.” That I need to tell my kids to suck it up. That society isn’t always going to be kind and “bend the rules.” And if I don’t fight for it, and give up, I feel as though I’m letting my kids down. They would love to have those experiences too. And they should be able to access things that others can.

It’s a fine line and one I struggle with.

Today at the art museum, we of course prepared. I know it well. I had all sorts of safety devices. I know the exits, we really read our daughter and felt she was in a comfortable mood today to try an adventure. She knows the art museum very well and has favorite pieces that she seeks out. Today, we felt giving her a sensory job to work on would help her. So we had her push her brother’s stroller. It gave her heavy sensory work and provided him with movement he craves. My husband and I both walked next to the stroller to guide her and make sure she didn’t bolt, and to ensure that she kept the stroller safe.

They both had one of the best times they’ve ever had. I was floored. It worked so well. Until a museum docent came up to us and VERY FIRMLY told us that is she not allowed to push, or even touch the stroller if she wasn’t in it. We thought that pushing with her was a good solution. But the next docent was not having it either. I started to put up my defenses but my husband encouraged me to move on.

This may have been ok with their children. But for mine, it wasn’t the group plan. It wasn’t what we discussed. It was an abrupt change. We saw a serious problem coming. We knew that she may fight or flight. We cornered ourselves into a quiet area and talked about it. We gave her lots of time to get around the idea. It worked today. This is a huge step. I’m so proud. We were able to spend a few more minutes there, she didn’t run away after calming down, and my son was able to switch spots with her so she could continue to get sensory input. This was a huge step for us. And I am still in awe how they handled it.

I keep looking back. The museum doesn’t really allow for some of thing that help our kids. They won’t allow me to wear her, and she can’t push the stroller. Both sensory accommodations that we tend to use often out in public. She can get in the stroller, thankfully, but that’s rare.

But on the other hand, it is art, and the museum needs to keep it safe. They have rules and I do understand why.

It’s a quiet place that the kids seem to enjoy. Us parents enjoy it even more. We love the museum. So we will continue. And of course work on museum manners and rules. And of course abide by the rules. But had we been able to keep doing what we were doing, we could’ve lasted a lot longer.

See? Tricky.

What is in a Name?

Lets talk about my blog name.

Quirky? Yeah. Speaks for itself. I can be a bit much. Which I own. And love about myself. My husband and I have discussed many times how sometimes it’s hard for me to make new friends. He’s said in a loving and understanding way, “Do you think it’s because you’re a bit too much sometimes for people to relate to?” I immediately knew the answer. “Yes. Of course. But I don’t want to be friends with anyone who considers that a negative thing.”

So. Yeah, quirky. Check that off the list.

Cool? Yeah yeah. We all know what that means. Technically this name was a play on words with TLC’s “Crazy Sexy Cool.” So I figured why not? I can consider myself cool. Who’s to say I’m not. 😉

Stimmy? What in the world is Stimmy? A cutesy name that I made up? A nickname?

Nope. Stimmy stands for “self-stimulatory behavior.” 🤔.

Stimming is most commonly thought of to be an autistic thing. It’s a coping mechanism. Ever see an autistic individual flapping their hands, rocking back and forth, or perhaps doing a certain movement with their fingers? Yeah, that’s stimming. It’s certainly a thing that neurodiverse people do, adhd people are commonly thought of to need fidgets to keep them from being disruptive. Yes, that’s a form of stimming!

But guess what? Nuerotyoical people stim too! Walk into a college classroom, you’ll see students doing all sorts of things. Chewing gum, rocking in their chair, doodling, taping their pencil, etc. What about when someone tells their friends some good news? Their friends join in this excitement, clap, scream, jump up and down, put their hands over their mouths? It’s an innate thing our body does for big emotions. Some people just need to do it more. There’s so much emotion, that their body needs to express it on the outside too. It’s like energy explodes from their insides and it has to be let out!

Many different therapies try to teach kids to suppress their stim. Because it’s different. Looks weird. Annoys others. It’s not socially acceptable. It may make you stand out as disabled.

I like to celebrate a stim. I’m intrigued at other people’s stims. It makes me listen to them, “oh. They are stimming, what do I think they are feeling right now?” It’s a communication tool for me. It doesn’t mean I go and talk with them about it. It’s just a way for me to read people and give them the respect they deserve.

So, what are my stims?

Shaking my leg

Chewing, Anything and everything (sorry to my dentist)

Scratching my lips

Moving around in my chair constantly

Sometimes cleaning will be a solid and helpful stim for me.

Playing with putty or my fidgets

Other forms of stimming that I’ve read about or seen are: touching a certain fabric or object, looking at certain things like bright lights, looking at pictures of organized drawers, flower petals opening up, listening to a song on repeat, knitting, twisting arms in a certain way, etc.

These are only to name a few. The next time you see someone stimming, think about it in a communication form. Listen to their body. Or really, just let them stim in peace. Don’t surpress a stim!

What ways do you stim?

Neurodiversity and Me

Ever wanted to know the inside of Tiff’s quirky, stimmy, and cool brain? Well. Welcome. I have a lot to share. Even more to learn. I have a very diverse family. And by diverse, I mean nuerodiverse.

When starting my parenting journey, and realizing my child was unique and special in her own way, I started the old google search when doctors dismissed me, I kept digging. After years and years of reading really sad and depressing articles, ableist words and “I’m so sorry’s,” I was completely discouraged at the negative outlook on children like mine. I wasn’t ever sorrowful. I couldn’t ever imagine a world where my child should struggle. She’s happy. And amazing. She’s smart and funny. I didn’t want her to grow up to be sad about her unique identity. Why was I reading these articles? Where was the positive and encouraging posts? Why wasn’t anyone looking at this through another lense? And then. I found it. Neurodiveristy. Wow. And to top it off?? I learned I am in the neurodiverse club too. How fascinating.

I can’t wait to take you on my journey. I’m learning. And I want to share what I learn with you. I’m vulnerable. I make mistakes. I learn. I discover. And I’m excited for you to join me. Let’s take a look at this different and new word.

Neurodiversity is a really long and confusing word if you’ve never heard it. Is it a medical term? Social justice term? Am I just making up words for fun?

The answer is, well, actually easier then it seems. Here is a good excerpt

(from https://www.disabled-world.com/disability/awareness/neurodiversity/)

According to the National Symposium on Neurodiversity (2011) held at Syracuse University, neurodiversity is:

“…a concept where neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.”

In other words, a condition such as autism is a part of who the person is and to take away the autism is to take away the person. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow people with autism to live as someone with autism.

Cool, right? This is not your grandma’s autsim, so to speak.

Advocates for neurodiversity still acknowledge that sometimes, it can certainly be challenging. But we celebrate that we are all different. Every single person on this planet is different. Every brain is different. Some have more needs to live up to “society’s standards.”

You’ll find that many of these neurological differences come with comorbidities. And THAT is what can make things a little more…challenging. Anxiety? In a kid? That’s HARD. OCD in a kid? Yup. That may be a ticket on the struggle bus. At least for a while until you realize what exactly is happening, why, and how to help it. Not all neurodiverse people are developmentally disabled. Not all have ocd. Not all are aggressive. Every single ND person is different from each other.

Kids have such big feelings to begin with so add in the social norms that kids have to abide by, all the adult and peer interactions, school, and typical everyday stuff, stimming, communication barrier, as well as autsim/adhd/etc, making them look or feel “different,” then yeah. It’s easy to say that autism looks or is scary if your child gets a diagnosis! It’s easy to feel that there’s a black and white difference and there’s a “them versus us.” Disabled versus non disabled.

But guess what? I bet, you, yes you, the person reading my blog, knows a handful of autistic adults. Yup. Some in your family, among your friends, co workers, your doctors, plumber, teachers. The children and adults living in group homes, those who can speak, those who can’t. Your online friends, They are everywhere. And you know what? They matter.

The neurodiveristy movement is here to create an easier and more supported existence for those who need it. Accommodations aren’t a bad thing. It’s like a installing a ramp for wheelchair users. Ramps are not bad. It’s just a different way to get where you need to be to be on a level playing field with the rest of society. Neurodiversity is also not an excuse to not teach your children right and wrong. Am I going to let my daughter strip down to her underwear when she’s uncomfortable or anxious in different circumstances? No. That’s not socially acceptable. Instead of punishing or shaming her, I’ll figure out the why. And then we will work on THAT. Behavior is communication. I also plan to teach them many social norms as we do live in a society where not everyone WILL understand Neurodiversity . I don’t want my children to be lonely and giving them some life skills will come in handy. We will work through each one when we come to it.

This movement, like any wild and drastic change of non ableist thinking can of course have extremes (can you even imagine this line of thinking fifty years ago!?) . Extreme love for the movement and extreme hate. You’ll find that a good and happy medium is where I’m at. Will I sit here and preach how awesome every single aspect of everyday is? No. It can be hard. The stuff that comes with nuerodiverse brains can be hard. And that’s ok. The lack of accessibilities, the fight for help and accommodations, the caregiver fatigue, the mental illnesses, the loneliness that can be associated with being a caregiver or someone who is Nd. That’s all hard.

But will I celebrate our neurodiverse family, their quirks, their funny and loving moments, our sometimes totally different and out there thinking? Maybe even our intense sarcasm, or truthful statements. Yes. That’s to be celebrated. Our differences are what make us who we are and hell yes I’m going to celebrate us.

Welcome to my blog, allies. Come advocate and learn with me.