Around the time my son was nine months old, we started noticing something different about him. Everyone tells you not to compare your child to others, but as a new parent, you can't exactly help it. You're not really comparing your child, but rather, your own ability to adequately raise another human being. We noticed he didn't behave the same as babies his age. No babble. No pointing. Very little eye contact. Obsessing over spinning objects for hours. So, we sought out answers.
He is now approaching his 3rd birthday, and our lives have changed drastically as we have gotten to know our amazing son. He is still non-verbal, but is trying his hardest to copy the sounds he hears. He knows numbers 1-10, all kinds of shapes and colors, the name of every street vehicle imaginable, and he can express his knowledge of these things by pointing to them when asked. His obsession with spinning objects evolved into an obsession with anything on wheels. Monster trucks, cars, pinwheels, grocery carts will all make him stop in his tracks and start "stimming". Stimming, for those who may not know, is a physical way for people with Autism/SPD to regulate the overwhelming sensory information they are having to process. For my son, it is a full body experience. Every muscle in his body will tense, and his arms shoot straight into the air and he begins to flap his hands. Many strangers mistake this for an excited greeting because he looks so happy while he is stimming. Until he fixates on something starts to stim, my son looks like any "normal" child. It's when he doesn't get to finish fixating and stimming until he feels regulated again that a meltdown ensues.
I'm telling you all of this because it leads me to my experience at the local kid's hair salon today and my reason for writing this.
We walked in and the place was pretty packed with kiddos getting their back-to-school haircuts. We were there less than 10 minutes (10 very peaceful minutes, I might add) when a mother and her little boy, a little younger than my son, walked in. The little boy was holding a dump truck, and my son became immediately fixated on it. He followed the little boy around trying to take the toy from him, and I was right on his heels with a distraction toy, telling him, "That's not yours." "Be nice." "I'm sorry, you can't play with that one, but here's this one." All the usual things. I was apologizing to the mother of the boy with every step, but I could tell she was getting annoyed. I don't really blamer her. Before my son's diagnosis, I might have reacted the same way. I was only trying my best to avoid the inevitable meltdown that I could feel was coming, but I'm sure it looked to her like I couldn't control my son. I'm sure I looked like a lousy parent with a lousy, spoiled child.
When my son finally couldn't take it anymore, we were in meltdown territory. My husband and I rushed him off to the side, away from the other families, and spent a moment talking him back down to his normal self. When we turned around, the mother of the younger boy had jumped in front of us and had taken our spot in the haircut line.
After the haircut, we left the salon emotionally tired, frustrated, and with our spirits low.
A few hours later, I was doing some Amazon shopping, and I found myself among the autism awareness products. There, they sell t-shits, jewelry, hats, thermos mugs, or anything else one can think of with those little, multi-colored puzzle pieces printed on it. I've never thought much about these items other than it felt, to me, like the parents who donned them wanted to validate themselves. Like they need to feel like they belong to a club where not many others belong. Don't get me wrong, I've never thought negatively about anyone who wore them, just that they weren't something we needed. We aren't ashamed of our situation. We don't feel like we are completely alone in our journey. Our struggles are not as hard as the struggles of some other Autism patients. We don't want people treating our family or our son differently out of pity, and I guess donning some kind of awareness apparel felt kind of like asking for pity.
I'm quickly starting to change my mind about that, though. I'm starting to understand the need for a little something on my person that tells the world that we are still under construction. That we are still figuring it all out. Something that gives a hint that we struggle a little more with everyday scenarios. Something that makes me feel like I'm not apologizing for my son's diagnosis. Since the incident at the salon, I've been wondering if the mother would have had a little more patience with me and my boy if she had seen a bracelet on him that said, "I have Autism." I've been wondering if she still would have had the audacity to steal our spot in line. If the other parents wouldn't look at him when he stims, then look at me as if to say, "Are you aware that he's doing that?"
Yes, I'm aware.
What are your thoughts, Steemit community? Has anyone started using awareness apparel for reasons like this? Has it worked well for you? I'm hoping to connect with other parents and patients of Autism here on Steemit. I have a hard time with facebook mom groups with the immaturity, disregard, and judgement that happens there, and I really think Steemit's design will lead to great conversation and an exchange of ideas.
I think that your son is perfect and it is probably the rest of us that are flawed. People on the spectrum are trying to figure us out as much as we are trying to figure out them. Who in their right mind would judge that? Make someone feel bad for learning the world? Shame on them.
My son is verbal, and hovering somewhere close to Aspberger's side of the spectrum. And we have had to fight tooth and nail against the judgemental overtones of other parents and some teachers along the way. We even had a teacher tell us once they had a hard time "pacifying" our son, like he was some kind of nuisance that just needed to be pushed to the side for a quick fix.
There is no quick fix, only a long game. Behavior therapy, speech therapy, social stories, meltdowns, new days, rinse, repeat. It's not easy. But it's a life filled with love.
We are just starting to settle into our long game. We have a special educator whom we love. She comes twice a week, and I think she's helped me just as much as she's helped my son! I've noticed a difference when I'm around parents of children with any kind of disability. There is more of a "it takes a village" feel than a judge-y "your kid better be nice to mine" kind of feel.
That is awesome! It is amazing when you can find someone that you can really trust and can really help too. It opens up a brand new world of possibilities you never knew existed before.
Our son has a 1:1 aide for at least half of his schedule at school and she is so amazing for him and us. She sends us all kinds of updates and gives us all kinds of new ideas of what is working at school that might not be working at home, and vice versa. She is patient, kind, caring, and indispensable. Special education is truly a calling, and we are very fortunate to live in a community that values it!
I love you, lady.
I love you, too, mister. And that son of ours. :)
You shouldn't have to wear a shirt or a bracelet for others to treat you with compassion, kindness, understanding and patience. Heck if that were the case, we should all wear them. Some would say "I just found out I have cancer. Sorry if I'm crabby in the Starbucks line". "I just lost my job, sorry I didn't hold the door for you". "My son hasn't been able to sleep for a week, sorry he's crying right now". If people simply started out thinking the best of others instead of the worst, we could all just wear shirts that say "Thanks for understanding. I'll pay it back next time you need some patience". And who knows what that other mother's shirt would say. Maybe "Sorry I cut you but if I don't pee in the next 10 minutes I'll wet my pants". That said, I'm a special education teacher so anything that raises awareness of Autism is cool with me. Continue to be an awesome mom. That's the piece you control.
"Thanks for understanding. I'll pay it back next time you need some patience".
I actually want that on a shirt now.
Forgot to respond to your overall question:
I feel a little wierd about autism branded stuff , I don't feel like it should be something that everybody needs to know - especially if its not the child's choice at all about displaying it.
In terms of marketing autim-specific products: I see a growing plague of dodgy companies trying to cash in on the autism community in the name of "charity" for massively overpriced crap.
I dont think we need it at all
I very much agree with you about the dodgy companies. I once read about all the pink items that are sold for breast cancer awareness and how little actually makes it to any kind of research funding. It was disheartening.
I can only imagine some of the sour faces you must get. Yikes. I know I've made a nasty one or two at a parent of a screaming child (and/or the child) when I was younger. This is great perspective to keep in mind. Thank you for sharing this piece of your journey with the community @jazzyfish
Thank you, @randyclemens At first, it's usually a look of confusion. Especially, when we are at the grocery store because all the wheels on all the carts set him off. It really looks like he's giving everyone a very emphatic "Hello", so most people start with a smile. My son is adorable. It's hard not to smile at him! haha! That smile turns to concern as they raise their gaze to meet mine, as if they are wondering if I know there is something off. Not everyone is sour about it, but you can always tell when they don't understand or aren't willing to try to understand.
Great article, I know these feels all too well ..
Both of my kids are non-verbal autistic with all sorts of stimming, sensory issues and bizzare little rituals we have to go through every day to keep the peace.
Tis a challenge, but worth it :)
Welcome to steemit @jazzyfish I'll be following your posts and I'm sure my partner @krystle will drop by soon too
Thank you for this post. It is easy for us to take for granted what a "normal" child is. We expect other children to be "normal" and if they don't behave the way we expect we think badly of the other parents. In your case your child looks like a normal every day kid, but only you know how and why your child reacts to certain stimuli. I applaud your courage.
I would worry with the stigma that they would look at him as a time bomb or as inadequate if it were my child that was wearing the bracelet or shirt. My mother ran a day care growing up and we had an individual who was autistic so I am very familiar with the melt down stage that you are referring to and as a child myself at the time not understanding what was going on. I feel many people not just kids but adults still haven't dealt with it enough to understand how things really are. Even if you had the bracelet the only ones that would truly understand would be the ones who have been around it personally and they would be the ones at your side trying to help or at the very least would know what was going on with or without a bracelet. Just my opinion on the matter but there is never a harm in trying either. You can always remove it if you decide to later. Thanks for the read I enjoyed it.
I worry about that a little, too, but sometimes I think not having to explain in those moments that I REALLY feel the need to explain would be a big relief, and like @krystle mentioned, help me to focus on my son, not the other people in the room.
You're absolutely right when you said:
There's a saying in the Autism community that goes: "If you've ever met one person with Autism, you've met one person with Autism." Meaning, every person with Autism struggles differently than the next. I think that's the biggest aspect people don't understand about the condition.
THAT needs to be a shirt. I would wear it.
Very happy to see you on here M'am. Thank you for sharing!!! ~ Jason
Thank you, Jason! :)
Do not feel alone... You are an awesome parent and even more for sharing this story. Be proud as you are and thank you for bringing more awareness to the community. If you are interested.. I have a similar #awareness project I am working on and maybe you might find interesting I provided 2 related links, of a series, below
Extremely Honest and Incredibly Awkward
Episode 1 - Awareness
@winstonwolfe told me about your posts as I was discussing writing mine with him. Thank you so much for sharing! I will definitely check them out and follow you!
The only one of those videos I've seen so far is the Awareness one. I need to check out the Extremely Honest one.
Sorry you had such a rough time at the hair salon with that woman. I am not so certain on whether or not awareness apparel would be helpful. I guess it is something you and your family will have to decide together. It never hurts to try it out and see if it makes any difference, but some people are just rude regardless. Either way, he's is one lucky little man to have such awesome parents.
Thank you, @tltran I'm not absolutely sure it would help with certain people either, but I think it might put my mind at ease at least a little. Maybe help my focus during those intense moments in public. You're right, if a person is going to be rude, they are just rude and there's not a lot anyone can do.
I have "been-there" chills from reading your post. My boys don't have an autism
Diagnosis but they were highly sensitive
Little buggers with later age diagnosis of NLD and CAPD/ADHD. I never donned a
shirt as such, but I would have appreciated a way back in the day to show that my kid (it depended moment to moment/day by day, which one...) is okay, he is not misbehaving, we are not bad parents, please just give him a moment to process this stress. love your post and well wishes to you and your family.
This is beautiful. Thank you for sharing your story with us. I have three little ones (2, 5, 7), and they are all amazing, though they can be difficult at times. My oldest gives us the most trouble, and we do get impatient with him when he's bothering the girls. When I read stories like yours, I'm reminded how easy we have it and how impatient I can be. I can talk with my children and reason with them. That's something I take for granted far too much. Thank you again.
Thank you for sharing your story. I will be interested to see if it does make a difference wearing autism related apparel, please do post your findings! I am a school based occupational therapy and I would definitely like to see topics/tags related to kids with varying diagnosis so parents and health professionals can exchange information, strategies and even ideas. Good luck to you! Your son is adorable!
First of all, well done on this. I love that line about how, as a parent, you don't really compare your child but your ability to raise a child...I so relate to that and it gave me good chills.
Secondly, I have so much compassion for your situation. I'm a single dad with a teenage daughter, so from a parent's perspective...but also from the perspective of how there is little awareness about what Autism is or what to expect, etc.
An amazing book, and maybe you've read it, is "Far From The Tree". The author who's name slips my mind, took about 10 years on a quest to understand a variety of "abnormal" situations kids are born with and parents are surprised with. It helped me develop more educated awareness to many things ranging from Autism to Deaf to many others that...unfortunately...society has often called "disorders".
Yes, they are not the "norm", but they are the "norm" for that person.
But I like the idea of some sort of way to signal to other parents... because it seems it would help you feel more empowered and open... I can see how it would be awkward to verbally say "sorry, he has autism and let me explain that to you"
An educated person would immediately identify this situation and not be irritated or judgy...but that's a lot to expect of the masses :)
Regardless, I'm sending you and your family light and love today as you work to solve the complexities surrounding these challenges.
And I'd love to discuss at some point, some research I've done on Autism as it relates to inflammation and "grounding" oneself to the earth. A recent study I read saw significant improvement in autistic behaviors of individuals in a variety of ages, simply consistently going barefoot on the earth (meaning dirt/grass/etc...making a "grounded" connection). I personally "ground" and have eradicated severe allergies I used to have here in the South...manage pain with it...and have improved my overall "stress" mental health. Scientifically speaking, grounding yourself to the earth eliminates inflammation in the body within about 30 min to 2 hours. I now actually sleep on a sheet that's made of silver thread in a "grid" and grounded to the earth and sleep issues I used to have are gone.
Anyway, I'm sure as a parent of an Autistic child you've heard all the latest and greatest "hope" that leaves you feeling more defeated or like you HAVE to cure this, rather than embrace your child for who he is.
So please know, I'm not suggesting any sort of "change" but rather that it has shown to improve behaviors and make some of the harder to handle things easier to manage.
Would love to chat more and hear your thoughts also!
Namaste :)
Hi there! your son and my daughter are the same, they can recognized shapes abc letters at the age of 1 plus. but no verbal communication until now shes turning 3 in two months time. Im very worried. pls read my blog too, and maybe lets advice each other. i feel you.
My kiddo is old enough to not want to wear his diagnostic label, but he loves when the rest of us wear items that support him as ASD. Many times I wish he wanted to wear awareness clothing just because it would help him move through the world. We have been training a service dog for that reason. The dog helps immensely with assumption and judgment. I'm glad you are talking about this. It's important.
If we allow doctors and the CDC to keep telling us lies that vaccinations are safe and do NOT cause autism then there is no need for awareness as 5 years from now it will probably be every 1 in 5 kids are autistic. How much more aware do we have to be when that happens? Especially refuse the MMR vaccine it is a nightmare and has outright caused autism in several occasions that the CDC has covered up or flat out ignored.
Wow.... downvote city.... people are just not ready to hear the truth yet.... hopefully when they are it wont be too late.