A mother and son

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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Why I’m Grateful for My Autism Diagnosis

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I am a family practice physician, and I’ve known I’ve wanted to be a doctor since I was 4. I’m fairly intelligent, but I struggled in school and was never in the gifted program. Growing up, people would say to me, “You’re smart, why can’t you just ____.” I felt the same way and had a low self-esteem and was hard on myself. I never felt like I fit in. I always wanted to, but I could never figure out what I was supposed to do.

It was like all the kids around me had been given some secret guide to being popular, and I didn’t have it. I got tired of being shamed for how I was acting. Slowly I learned what I was supposed to do by watching others and trying to copy what they did. I was grateful for people like my mom who would give me gentle corrections when I acted inappropriately. It was a lot of hard work as I constantly had to be thinking about what I was supposed to be doing.

I started to do a lot better in college when I could select classes that were interesting and challenging for me. I still acted differently, but I found friends who didn’t care so much. I graduated with a bachelor’s degree in biomedical engineering and was accepted into medical school in New Jersey. I was specializing in family medicine until 2012 when health issues forced me to step away from practice. I currently work with the Colorado Cross-Disability Coalition (CCDC) as a disability rights advocate and activist.

I attended a lecture at a conference last summer about teaching religious education to kids on the autism spectrum. As the facilitator started going down the list of traits that kids on the spectrum often have, I realized I had personally had issues with most of the areas listed. As I read more about autism, I also found that symptoms can be very different between men and women. Men tend to act out more when they get overloaded, whereas women tend to shut down. Autism is thought to occur more frequently in boys, but I wonder if we’re missing a lot of diagnoses because of generalizations about autism from the behaviors we’ve seen in boys.

After the workshop, I had begun to research autism and realized that it could explain many of the things I had challenges with growing up. After a thorough evaluation by a psychologist, it was determined that I do indeed meet the diagnostic criteria for an autism spectrum disorder. I was relieved. Getting a diagnosis finally allowed me to forgive myself for not being able to figure it out when I was younger. I also could finally acknowledge how much work I had put into learning how to act, and how much work it took to maintain all of the time.

When you’re on the autism spectrum, your nervous system is under constant assault from all of the sensory information in the world around us. Sounds are louder, colors are brighter and tasks you need to accomplish can quickly seem overwhelming. I have always suffered from sensory overload, though I didn’t have a way to explain what was going on. As I have learned, pain, illness and general stress can all make this sensory information even more overwhelming. Modifications to the environment can help as long as you know what sensory overload is and what your triggers are.

Since my diagnosis, I have been able to learn what sets off my overload and how I need to advocate for myself and my needs. I have also been able to learn what I can do to help manage overload. I bring a visor and ear plugs with me wherever I go and have gotten glasses with a special tint that help with my sensitivity to florescent lights. I’m also gentle with myself when I get overloaded and need to stim. I have had to learn to be a strong self-advocate, especially because neurotypical people often can’t understand why such seemingly small things can be overwhelming for me.

I have learned to thrive through the advocacy work I do for myself and others with disabilities. I understand the communication issues many neurodiverse people face as I have a lot of trouble trying to talk when I am overloaded. In speaking with other neurodiverse people and their caretakers, I am able to understand the problem from the standpoint of having a neurodiverse brain and suggest solutions that others might not have thought of. I am very passionate about issues that are important to me, and I redirect my energies towards the work I do. Advocacy work is also ideal for me because I can tailor the hours I work so that they’re better for me. I can also make sure to get the supports I need to do this work.

Autism is not a curse, and I’m glad I have my diagnosis. I have started to learn what I need to do to take care of myself, and I am better able to speak up for my needs. For me, my diagnosis connected many of the parts of my life that previously had not made a lot of sense. If you think that you might have “high-functioning” autism, talk with a psychologist who specializes in diagnosing adults. I’m certainly glad I did.

Follow this journey on Health and Life.

Lead photo source: Thinkstock Images

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Mom Petitions Target and Large Retailers to Add Sensory-Friendly Checkout Lanes

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Kristen Jackowski wants to make shopping easier for families with sensory sensitivities. Jackowski’s 5-year-old daughter, NavyAnna, is on the autism spectrum and is often overwhelmed by the candy displayed in checkout lanes. Now Jackowski, through a Change.org petition, is asking big retailers like Target to create sensory-friendly shopping lanes that replace sweets with sensory-friendly toys and other items.

This simple change could potentially help lots of parents whose children have either sensory processing disorders or food allergies. “Once the candy, chocolate, and other snacks are within arm’s reach, the meltdown is inevitable,” Jackowski wrote in her Change.org petition. “We have also encountered judgment from other customers and employees who are ignorant to these issues in that they lack education and sensitivity training. The stares, comments, and eye rolls of disgust I could do without because the situation is already hard enough.”

Jackowski’s petition has been signed by more than 1,000 people and has caught the eye of major retailers, including Target. According to CBS Philly, Jackowski’s petition has made it all the way to Target’s corporate headquarters. It’s also caught the attention of her local Shop Rite in Brookhaven, Pennsylvania.

While Target told Philly Mag that making the changes recommended by Jackowski would take lots of planning and design changes, Paul Kourtis, the store director at the Brookhaven ShopRite, was able to implement a sensory-friendly check-out lane in just days. “I just merchandized the aisle correctly with sensory-friendly objects. No candy whatsoever,” Kourtis told the magazine. “It was easy to do. We’re happy to do it. I have 18 checkouts at the store. If I lose one for a good cause, that’s perfectly OK.” The Brookhaven ShopRite also plans to provide sensory-friendly training to store employees.

Jackowski has met with her local Target, whose staff said they can’t make changes without the approval of Target’s corporate office. She remains optimistic. “Since I am a dog with a bone I will be pushing this further,” she wrote. “I see a very simple solution to an issue plaguing my family and other like us. Just a few simple in store changes can be monumental! Let’s make the world a little better, more inclusive and help people understand!”

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