The Question I Want to Be Asked About My Daughter on the Spectrum

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After my daughter Raelyn was diagnosed with autism, I got two tattoos in her honor. I think they were healing for me. I have one on each forearm, so I always get asked about them when I’m out in public. They can be a wonderful ice-breaker to get people talking about autism. Almost every time I leave the house, at least one person asks about my tattoos. I tell them about Raelyn’s diagnosis, and they often respond in one of two ways: They either say, “Oh, I’m sorry.” Or they get uncomfortable, look at me with pity in their eyes, and immediately change the subject. I’ve become so accustomed to these statements, I have my cookie-cutter responses already in my head.

a mothers two tattoos on her forearms dedicated to her daughter on the autism spectrum

Well the other day at Publix, the cashier left me absolutely speechless with her response. She asked about my tattoos, and I explained they are for my autistic daughter. Do you know what she said? Not that she was sorry. She didn’t look at me with pity or sympathy. This sweet, teenaged girl simply asked me, “What is she like?” I just stood there for a minute while I processed what just happened.

It’s such a simple question: “What is she like?” — and this cashier probably has no idea how much of an impact she made on me that night. I don’t know of one special needs parent who actually feels sorry for him or herself. Sure, we may have our bad days. Of course, it is heartbreaking to watch our kids struggle. But I believe the love we feel for them can negate all of those bad days and negative feelings. I may sometimes get sad when I watch my child working twice as hard to achieve the outcomes of her peers, but I don’t feel sorry.

I know people usually mean well when they say they’re sorry. But to say “I’m sorry,” I feel, is basically saying you pity our lives. You’re telling us anything not deemed “normal” deserves pity and sympathy. My daughter is so much more than a diagnosis. She has likes and dislikes, thoughts, feelings, strengths and weaknesses. Raelyn is an individual, just like any other person, with her own unique personality. So open up that door to let me tell you about her. Let me open your eyes to the beauty my child brings to the world.

Do not pity me.

picture of young girl playing on grass field with rainbow drawn on the photo

I have the most amazing life I could ever ask for. I work with Raelyn for hours on things that may come more naturally to other kids. But you know what? The hours of hard work make those sweet victories so special to us. I treasure every milestone and celebrate things I may not have otherwise thought twice about. Working with Raelyn has helped me slow down and just enjoy every little thing that makes her unique.

You will very likely be put in a situation where someone tells you their child has autism or another special need. Don’t tell this parent you’re sorry. I can assure you they have probably heard that response thousands of times and are most likely sick of it. I challenge you to ask that person: “What is he or she like?” You may be surprised by what you learn.

Unfortunately, I’ve found people like this Publix cashier can be few and far between. My post, “To the Mom Who Doesn’t Understand From the Mom Who Wishes She Would” is about the ignorance society has regarding autism and is a great read if you are looking for more information on what not to say.

Images via Contributor.

A version of this story originally appeared on My Atlanta Mom’s Club. Follow this journey on Facebook.

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My Advice for the Teacher of My Son on the Autism Spectrum

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Dear Teacher,

I am happy to see my son is in your class. I am sure you have chosen your profession because you love working with kids and have a passion for teaching. I am sure you are dedicated and highly motivated, and that when you realized you would have a child on the autism spectrum in your class, you did a lot of research to ensure he would have a great start. However, there are many myths about autism.

You might have heard that autistic children cannot show love or emotion. This is a myth. My son does feel, but sometimes his emotional thermometer only registers extremes. You might know if he is feeling happy, sad or angry as soon as he enters the classroom. It’s worth spending the time working out any challenge he is experiencing at that moment instead of later. I hope he will learn to trust you, and I hope you will like him. He loves jokes, computers, calmness and rules, and he needs patience.

My son has strengths and challenges the same as all children. He is excellent at some things, like visual learning and memory skills, and he has challenges in some other areas, like following verbal instructions. He, like some other autistic children, can see the details but needs help putting all these details together to see the bigger picture. Take care that he understands the task. Sometimes it is too many instructions, too much stimuli or simply too many words that can lead to a challenge rather than lack of understanding. In short, he can learn given the right circumstances and may surprise you at times.

Autistic people can make friends and have successful relationships. However, my son often misreads or misinterprets situations, and this makes him feel nervous and stressed. I compare it to trying to communicate when you are learning in another language — you might often feel like you are a step behind everyone, you are missing the joke, not quite getting it, embarrassed at making errors, wondering if you have it right, never really being able to relax. That is hard work! Please take the time to help my son with social interactions.

Understand there is always a reason for a meltdown, including sensory issues. Sensory issues are significant! My son might not stay in his chair, he won’t always look at you when you are speaking and he might repeat himself many times or fail to answer. But it’s likely that the traffic is piling up in his brain; he sees every detail, he hears every pencil scrape, he can smell the coffee you drank at break time, I forgot to cut the label out of his new trousers and it is prickling him, he is sitting on a different chair, he missed the last thing you said. He is not being rude, naughty or not listening — his senses are in overload. Imagine trying to give a lesson while riding on a roller coaster.

At times my son might not bring the book/bag you asked for or remember his homework. It isn’t because he is naughty or because I am not supporting him. He doesn’t remember. But he will remember some facts/moments/things that will astound you! School is school, and home is home. These can be separate maps in his brain. Please send me a mail, app or tweet to let me know what he needs and his schedule. I hope we can develop a good relationship for the sake of my son.

I understand you might be a bit nervous and worried. I can only offer one piece of advice, as a fellow professional and as a mum. Don’t look at my child as “the one with autism” — forget his diagnosis and simply look at the boy. His needs are the same as any child’s: to feel safe, secure and happy in class.

I wish you a successful year and want to thank you in advance for the extra time I hope you will give to my son.

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To the Parents Whose Child With Autism Is Having Difficulty Sleeping

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Dear parents,

Does your child have difficulty trying to go to sleep?

When I speak with parent groups, sleep difficulties tend to be one of the top challenges that get mentioned.

When I was a kid, I had bed guards on my bed due to difficulties with my balance along with issues with tossing and turning for long periods of the night. Today, I know countless kids on the spectrum who have similar challenges to mine growing up.

Just like no two people with autism are the same, the reason for these challenges can vary. Sensory issues such as noises and lights can play a huge part in that challenge. This was especially true for me growing up in a big city where I was exposed to high beams from vehicles, horns and sirens.

One of the things that helped me, along with bed guards, were bed shades that would take away all external light so I could be in a pitch-black environment. As I got older, I had a night-light that was dim so it wouldn’t affect my sensory issues. Then, my parents helped me form a schedule for going to bed every night. For example, growing up, I used to be obsessed with “Wheel of Fortune” and Vanna White. So as a child, 15 minutes after “Wheel of Fortune” was over, that was my bedtime (we’d keep the brightness on the television dimmer, though, as bright lights can tend to keep children up longer). My parents found it important to have me go to sleep on a positive note due to my emotional challenges, and it did wonders.

This became part of my reward systems. Along the way, we would look at more reward systems for when I would fall asleep by myself. Later in my adolescence, and when it felt like I had more energy, we cut down caffeine and sugar in my diet, especially in the afternoons and evenings. As I started getting involved in more sports, a boost in my regular physical activity, I was also able to maintain going to sleep easier and staying asleep throughout the night.

For the parents out there who are reading this, I hope you know you aren’t alone in this journey. Sleep is one of the most important things our bodies need. Help your child by reading resources — like this
toolkit you can download, Sleep Strategies to Improve Sleep in Children With Autism Spectrum Disorders: A Parent’s Guide — to prepare them for that transition to bedtime.

Sleep well all!
Kerry

A version of this blog originally appeared on Kerrymagro.com.

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To Those Who Don’t Get Why I Don’t Kiss My Autistic Son

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I come from a family that is quite big on public displays of affection. The thing is, I was never really comfortable with that. I have been told on more than one occasion that I wasn’t a cuddly baby. When anyone tried to sit me on their knee, I would fight and say, “Down, down…” I remember feeling uncomfortable at being forced to kiss my aunt, and family parties filled me with dread. My grandad bucked the trend, too, and flatly refused to kiss anyone. He hated it!

It came as a huge surprise to unaffectionate me when my older son was born that I had this overwhelming need to smother his tiny face, arms and legs with kisses, smiling happily while listening to his squeals of delight.

We kept up the family traditions of kissing goodbye and goodnight to relatives, but my son always presented his head for kissing rather than his lips. He never clung onto me when I lifted him up. He would happily run off at playgroup without a second glance to where Mummy was. I always knew he loved me; he just didn’t have the need to grasp my leg or wrap his arms around my neck to show it.

My younger son was different. He clung to me like a baby monkey and curled up on my knee, seeking affection. He smothered me with kisses and sought closeness, staring into my soul with his huge brown eyes.

When my older son was diagnosed with autism, some things made more sense. His over-sensitivity to smell means he knows what you ate or drank an hour ago. His over-sensitivity to touch means the stubble on his uncle’s chin feels like sandpaper on his cheek. Close proximity makes him feel stressed instead of feel loved.

I know my eldest son loves me — he just shows it in a million tiny ways. I don’t feel sadness, regret or lacking in anything. It is simply who he is. I get it… But I also get how it can look to others.

I have been accused of showing favouritism to my youngest son. I have been told. “He likes cuddles too.” And not by strangers.

I want to set the record straight. I don’t kiss my son because I love him. I don’t kiss him because it doesn’t make him feel good. I go against every fiber of my being, every feeling that courses through my body when I look at him with immense pride, affection and love because he doesn’t want it.

Why force unwanted affection on him? To make yourself feel better?

I don’t confuse affection with love. But I do tell him a million times a day that I love him.

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