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Having Autism, Hating Loud Noises and Being the Loudest Kid I Knew

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Does your child hate loud noises but is also the loudest child you know?

If so you may be able to relate very well to my own personal story of growing up on the autism spectrum.

As a kid due to my sensory issues I would have issues with different sensations and bright lights. The one issue though that topped them all was noise. Growing up in a big city in the tri-state area, noises would always send me into sensory overload.

It could be anything. A car horn. An ambulance siren. Someone talking loudly outside. It didn’t matter.

And when those times would come, especially around the time I was diagnosed with autism at 4, I would scream as loud as I possibly could as a way to cope. Most of the time when I screamed I thought that would make all the noises around me stop. It wouldn’t be until a few years later though that an occupational therapist would help me learn to control my screams and my anger.

Later, when I started school I’d also have a title of being “the loudest kid in school” because of my inability to understand the difference between inside and outside voices. Whispering was a foreign language to me. My whispering was talking normally and me talking normally was speaking with an elevated pitch that would echo around the classroom.

One of my saving graces when I couldn’t understand this was my love of entertainment. Being able to watch films where people were talking softly at one time and loudly at another gave me the opportunity to mirror that behavior. I turned that into a great love for the theater. Roleplaying different scenes helped me find that balance in my own voice. By the time I started doing plays when I was 10 it became second nature.

My transformation from being one of the loudest people I knew to who I am today was created through the supports I was given thanks to my parents and my therapists. I know many children and even adults on the spectrum who still struggle with sensory issues and understanding pitch and tone.

If this is something you or a loved on struggles with, I’d love to suggest theater or music therapy to help. Also consider supports to help someone cope with their sensory issues. This can be anything from social stories to help with transitioning to noise cancelling headphones to help with sounds.

At the end of the day, progress should be our #1 goal. I can project when I need to but am mostly a quiet kid from Jersey today who loves concerts and blasting my music whenever I can with minimal sensory issues.

A version of this blog appeared on KerryMagro.com.

Image via Thinkstock.

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Why I Won't Be Sharing the Posts About Autism That Go Viral

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It’s happened again this week. A post about a child with autism has gone viral. A mum posted on Facebook, and that post has been reported on all over the world (well I’ve seen it in America, the U.K. and Holland). My best friend sent me an app with the link, asking, “Have you seen this?” (I love her!) I hadn’t seen it, but when I did my heart sank a little bit… (If you haven’t read the piece, you can see the BBC version here.)

Posts like this always make me feel sad and disappointed because they appeal to the journalistic culture of pity or fear.

Firstly, my heart went out to this mother — how hard it must have been for her to know her son ate lunch alone, every day. But… where were the caring staff at school to support this child? Lunch times in a large space with lots of people are bound to be difficult for a child on the autism spectrum. Why wasn’t he being given more support?

Secondly, I applaud the mother of the football player, as she has obviously raised a kind, caring, intelligent young man. He saw a boy eating alone, sat with him and talked with him. But this is just a story about a man showing kindness. Why are we applauding his kindness? My husband shows kindness every single day — that is why I fell in love with him. In fact, today he helped a lady in a wheelchair. Thousands of people — therapists, doctors, teachers, etc. — work with our children and show amazing kindness too, but it isn’t front page news. Is it news because this football player is somewhat famous?

I am happy that the boy now has friends to eat lunch with, but it makes me sad that it took one famous adult to let them see the boy for who he really is. To get them to look beyond the awkwardness, the hand flapping, to really see him. Another case where autism awareness has not lead to acceptance.

When my nana, died my brother gave the eulogy, and he began with something that has sat with me ever since: “Her life was one filled with small kindnesses.”

Amazing, pure, simple and true. My nana was a beautiful woman, happy, fun but above all kind. It makes me sad to think we live in a world where many people have forgotten this simple message. If anything, this story demonstrates how one small kindness can have an enormous impact! But is kindness so rare that it deserves to be reported worldwide?

So, my friends, within your busy day, pause and think, and if you get the opportunity, please perform one small act of kindness. Raise your children to see kindness as the norm, not as a special action to be applauded. And think before you share…

I will not be sharing posts that prey on our pity or fear. I will instead share a store of the amazing athlete Mikey Brannigan, who ran the 1500m in less than 4 minutes in qualifying for the Paralympics. Oh, and he also happens to have autism. Did you hear about that? Good luck to all athletes taking part in the Rio Paralympics.

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I’m Not a ‘Supermom’ Because My Child Is on the Autism Spectrum

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I’m not a “supermom,” but I get called that a lot. Having a child with autism does not make me one. Please let me feel weak sometimes and let me cry. Let me make mistakes and let my guard down. Let me just be a mom, a wife, a woman, not a “super-someone.”

The day my son Vedant was diagnosed with autism, it felt like life handed me a cape and said, “Now you fight and never stop doing so.” But there are days when I’m exhausted and wish that never again should a mom have to fight for what is rightly her child’s and hope that the world will be more sensitive to any child who has challenges.

For once, to the person who snatched my son’s straw away, all I want to say is, “Please be considerate. It’s my son’s sensory toy. It keeps him calm in a crowded bus full of noisy kids.” Some days, I don’t want to cry out loud and ask him to go educate himself on autism.

Instead of telling that teenager not to pity my son when I tell her he has autism, I wish the school and society taught her better and told her that autism has its strengths, too. I am tired of explaining that autism is not the end of the world — it’s just a different world. No, I’m not a supermom. I feel run-down every now and then.

Sometimes all I hope is that the mom waiting in that lobby was more sensitive. My son simply wanted to be friendly with her child, and that is why he came so close. He did not hurt her or scare her. Let her learn about interacting with people who are different. Let her learn to be accommodating. I don’t want to stand on a podium and explain to her the importance of inclusion.

There are days when I don’t want to put up a fight every time someone shows me that the society is still not ready to co-exist with a child with autism.

Occasionally, when things get overwhelming, I feel like quitting, and I don’t want to feel guilty about that thought. I need that weakness in me. I want those cracks so my pain can find a way out.

There are days when sifting through all the therapies that haven’t worked makes me want to suspend my optimism and cry. Just plain cry for fear about the future. Occasionally I want to complain.

Just for once, I too want to go to concerts, movies, and date nights; to attend parties, stay out late, and take a break. For a change, I want someone to have my back.

I wish it were a world where you were not forced to be a fighter, a supermom, and a constant advocate if you have a child with autism. If anyone is a warrior and has superpowers, it’s my son — not me. He is a super-kid.

Follow this journey on Tulika’s blog.

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When a Stranger Feels the Need to Comment on Your Child’s Meltdown

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Strangers who don’t really get autism don’t seem to understand the difference between a meltdown and a tantrum. It’s a common problem. A tantrum is usually when someone is trying to get attention, while a meltdown is the overload of a child’s senses in one way or another.

If I had a nickel for every time a parent told me a story about their kid having a meltdown in a public place, I’d be a rich. But these situations also tend to be followed by a comment from a stranger such as, “A parent with a well-behaved child would never act out like that” or “Let me tell you how you can help your child stop that.”

I really wish people would stop being this ignorant when they say things like that. I’m not a parent, but, while growing up with autism, I remember my parents having to hear these comments from time to time. It was brutal. My parents aren’t bad parents. My parents are my champions and some of my greatest advocates I could ever ask for.

While noise-cancelling headphones and weighted blankets can help manage meltdowns, my strongest recommendation to parents has always been to try and remove potential triggers that can start a meltdown in the first place.

Other times, though, you just have to understand there won’t be a fix. You’re going to have to wait a meltdown out. Being there for your child and them knowing you’re in the room can make a world of difference. Never forget that.

And for those strangers out there who feel the need to make a comment while a child is experiencing a meltdown, please think about the words you’re going to say before you say them. We all have challenges — some are visible while others are not.

One of my favorite quotes of all time is something I hope you will takeaway next time around:

“Be kind whenever possible. It is always possible.” – Dalai Lama

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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How Mariska Hargitay Helped Me Stay Safe as a Person on the Autism Spectrum

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While growing up, my childhood was seemingly so innocent. Besides the imaginary monster under my bed, there wasn’t a lot I thought of to be afraid of. As I got older, I began to realize not everyone has good intentions. The monster under my bed disappeared, and I learned about the real monsters in the world. And while many people learn how to keep themselves safe from these monsters, I didn’t really pick up on the skills. I knew I was different, but I couldn’t understand what to do. How can I, as a young woman on the autism spectrum, make sure I don’t get hurt?

One day, I was looking at a website for Mariska Hargitay, an actress I’m a fan of. She has done so much work in spreading awareness of sexual assault and helping survivors heal. So when I was on the site and found a page under the resources for Harm Reduction Tips, I was thrilled!

The page included tips I had never even thought of. One tip I learned was to make sure to always watch my drink. Another one said to avoid being alone with someone who has been drinking or taking drugs, even if I know them. There was another tip which helped me understand how to trust my instincts. I learned if I feel uncomfortable, I don’t need to worry about being polite. And of course, the most important information I read was the fact that I can say “no,” but that silence does not equal “yes.”

This page finally gave me some answers I was looking for when others were not sure how to help. It can be difficult for me to read social cues. But I now have at least some concrete ideas on how to better keep myself safe. And I truly feel they have helped me get out of some situations I was uncertain of.

Thank you, Mariska Hargitay, for helping me stay safe.

Image via WikiCommons | Joella Marano from Manhattan, NYMariska Hargitay

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Attending Parents' Night at the School of My Son on the Autism Spectrum

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I’m not sure how other parents feel about parents’ night. I’m not quite sure how I feel about it myself. I feel like I should prepare in advance and have some relevant and meaningful questions to ask about my son J and his schooling. However, I don’t prepare or think up things to ask, partly because the school keeps us informed of some of what he’s doing in his weekly summary and with termly updates.

I do, however, feel a bit anxious before I head in about how it will all go. Is he doing well? Does he try hard? Does he listen or do what he’s told? I know he recognizes his numbers to 20/30 and well beyond (probably up near 100). He doesn’t quite have 1-2-1 correspondence nailed for counting or know “the oneness of one,” but he’s trying hard and he’s getting there. He knows all of his colors and shapes. He can recognize and name every letter of the alphabet, in and out of sequence. He can sing with tune and rhythm, as well as finishing rhymes and songs by saying or singing the missing words (using approximations of words). I think he is amazing. He overcomes so much and he just gets on with things. He’s a trier and a doer. If he doesn’t get something, he just keeps trying. All of this I know, and I’m not worried about his “academic” progress as such.

My worry is about his social skills. His ability to relate to others, to play with his classmates, to make friends, to follow instructions, to join in and to respond to life in school appropriately. He quite likes his own company or space and doing his own thing. Can he go to assembly? Can he join in with performances? Does he watch whole school events or join in with them? I wonder if he’s coping in the classroom or wider school setting. He seems happy at school and seems like a happy boy generally. I’m grateful for this.

After speaking to his teacher tonight and looking through his books full of photographs and learning aims, which show what he’s achieved over the year, I have to say I’m impressed. His teachers, assistants and the school in general give him so many experiences and opportunities. He interacts with school on his own level, but over the course of his first year there, he has achieved so much. From not being able to join in at all and finding change and noise so hard to cope with, from not being able to sit at a desk or in a group, not playing or sharing with other children and not having many interactions with others, he has come such a long way. He can now join in with assemblies and whole school activities, he can sit for circle time, play alongside other children, join in with some activities in the class, go for outings in the local community and further afield, and he initiates interactions with people around him. He never leaves school without waving and saying “bye” to every member of staff he passes.

I’m one proud and happy mum tonight. Anyone who knows me knows I’m not an overtly emotional person, but I don’t mind saying that I have tears of joy running down my cheeks as I write this. My baby has overcome so much, he’s tried so hard, and although to many it may seem like small steps forward, for us he has made huge leaps. His school and the staff there have played a big part in that. We can’t thank them enough.

Follow this journey on Upside Mum.

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