boy in ghostbusters costume

What It Means to Be a Ghostbuster When You're Parenting a Child on the Spectrum

My boys’ obsession with “Ghostbusters” began one afternoon when I was trying to do yoga alone in my bedroom. The movie’s theme song came on, having somehow made its way onto my “Soothing Instrumentals” playlist. The boys stormed in. Soon the three of us were flying around with towels and blankets thrown over our heads, spooking one another and shouting out, “Who ya gonna call?”

Since then we’ve listened to the song countless times, purchased Ghostbuster action figures and even built a model of the Ecto I. Perhaps against my better judgment, I let the boys watch a snippet from the original movie: the scene when Slimer – the putrid green ghost with an obscene pink tongue – first makes its appearance. At the instant Slimer charges Dr. Venkman, ensnaring him in green goo, my older son, who’s on the autism spectrum, ran out of the room.

Although he hasn’t asked to see the movie again, my firstborn’s preoccupation with the paranormal continues. He has endless questions: What are ghosts made of? Where do they live? Are they real? He is both intrigued and unnerved by these invisible beings floating through space, haunting us and wreaking havoc on the material world, somewhat similar to the anxieties he must face every day.  

I didn’t know until recently the extent that autism and anxiety can overlap. Many of behaviors exhibited by kids on the spectrum are actually rooted in anxiety. The list of my son’s anxieties is ever-expanding: the dark, crowds, unexpected noises, changes in routine, odd foods, and now, thanks to his mother, green ghosts that slime people.

Anxiety is also a big part of raising a child with a disability. My own fears often well up at night, like the ginormous Stay Puft marshmallow ghost. I am visited by apparitions from the future: my son, five years from now, trying to correctly identify the letters of the alphabet, in a self-contained classroom or kicked out of school altogether because he’s “too difficult” to manage. My son, age 20, struggling to complete high school or find a job, and unable to live independently. Then I move onto my toddler, who’s showing some signs of autism: meltdowns, food and auditory sensitivities.

I wake up from these restless nights as if I’ve been slimed. I’m liable to transfer this anxiety onto my children. There are times when I push them to perform to alleviate my anxiety, forcing my older son into more handwriting practice or insisting my younger son eat everything on his plate just to prove to me he’s not a “picky eater.” In my desperation to be reassured that they will be OK, I end up communicating to them that they are somehow not OK. 

These moments call for some serious ghostbusting. For me, that means refocusing on what’s real. What’s real is my older son’s smile, his laughter, his sly sense of humor and his wicked morning breath. What’s real is that, yes, he has some significant challenges, but we’re working on them and he’s showing progress. What’s real is my younger son is a stubborn 3-year-old who throws fits and sometimes refuses to eat.  He’s also sociable, confident and positively gleeful. When I get the slime out of my eyes and focus on the real flesh-and-blood children before me I see, in actuality, they’re doing just fine.

Yesterday, the kid’s “Deluxe Ghostbuster Costumes” arrived via Amazon. These full-body jump suits, complete with the Ghostbuster emblem and inflatable proton pack, promise to take their ghostbusting to a whole new level. Now the boys can suit up, turn on the theme song and zap away all those pesky ghosts that keep us up at night – while I try to do yoga.  

Follow this journey on Somewhere Over the Spectrum.

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mother and son walking together

When a Parent Gets Criticized If Their Child With Autism Wanders Away

Every year I feel like I hear more stories of children with autism who have wandered away from their families. It’s often one of the scariest feelings in the world when that situation occurs. Instantly the trigger kicks in, and it becomes a time when families start alerting law agencies, neighborhood watches and their friends and family members to help in the search for their child.

The issue I constantly see is when a parent receives criticism for not doing a better job of protecting and watching their children. Often times, the interrogation begins and these parents are asked why they didn’t do this and why they didn’t do that, while others say they would never let their child get into that situation to begin with.

Whenever I hear someone make a comment like that, my bottom line is simple: Never criticize anyone until you know all the facts.

Being a parent to a child with autism can often be a 24/7 job. You support them and you become their champion for supports. Until you’ve walked in their shoes and understand that child as well as that parent does, you don’t do anything by criticizing them during a time like this. The important thing to do is find the child.

When children go missing, it becomes imperative to find them as soon as possible. The National Center for Missing & Exploited Children is the nation’s clearinghouse on issues related to missing and sexually exploited children, and they do their best to assist families and law enforcement agencies to help find missing children. New technologies are also being developed that focus on safety for families, from smart homes to wearable tracking devices, so you know where your child is at all times.

While I never went missing in my life, I was prone to bolting during my first few years of adolescence growing up on the spectrum. Each individual is different, but today this cause is near and dear to my heart. Every life is precious. And according to a study published in the journal Pediatrics, 49 percent of “survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years.” 

There is still so much more we can learn out there about how to protect our loved ones. When the time comes, though, please don’t criticize. Instead, help explore ways with them of getting things back on track.

Be safe and show love during both the good and bad times we all have. I pray for the safety for our families often and always.

If you are looking to learn more about this subject you can find free resources at The National Center for Missing & Exploited Children’s website here.

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I Want to See More Autism Awareness in Schools to Help Put an End to Bullying

One of the quotes I often see out there in the autism community is:

“I don’t think the worst thing that could happen to me is raising a child with autism. I think the worst thing is to raise a child who is cruel to those with autism.”

One of my earliest memories of cruelty to another child was by a bully. My peer had a last name that sounded similar to an insect, and one day a bully who saw a bug on the ground at school stepped on it and told my peer, “Looks like I just stepped on your cousin.” 

Words aren’t harmless. They can hurt our loved ones. It made me sick to see something like that. While my peer, distraught and close to tears, tried to compose himself, I wanted to say something to the bully but just didn’t know how. All I could think about was the ignorance I saw.

When I think of the quote above, I often think about the ignorance that is still out there today. When I speak in schools about bullying prevention and autism awareness, so many children still don’t know what autism is, let alone that Autism Awareness Month is in April and World Autism Awareness Day takes place on April 2.

Other times, I asked them what attention deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), dyslexiacerebral palsy or Down syndrome is, and they didn’t have a clue about those either.

It makes me often think about the future for our community. One of the biggest changes I observed when I moved from public school to a private school for students with disabilities in fifth grade was a significant increase in disability awareness. Not only would the school share facts about most disabilities, they would also share stories about inspiring celebrities who have disabilities to try and inspire us.

That type of awareness is something I wish more people would advocate for. It’s been shown that if you educate a child early on, much like giving a child with autism early intervention, you can give them a great opportunity to progress as they get older.

We need to teach our kids that autism is not a tragedy. Ignorance is the tragedy. Then hopefully these kids can focus more on making friends, getting the supports they need and living a life where cruelty among bullies is a thing of the past.

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When a Lady at the Grocery Store Gave Us Just What We Needed During My Son's Meltdown

I believe when God created this world, he sent in a few angels who would touch people’s lives with their kindness. They would come into our lives and restore our lost faith, our strength, our hope, and our happiness. When others stare or ignore, these angels would reach out and hold our hand; when others stand and judge, they gently whisper, “I understand.” I am lucky to have met one of those kind souls.

Those with a child on the autism spectrum know how quickly a seemingly innocuous event — a walk in the park, a trip to the store, a day at a fair, a birthday party – can escalate into an incident. What we call meltdowns are just an external manifestation of a person’s inability to communicate, the sensory overload playing havoc on his or her mind, and tons of other factors we might not even know.

It was one of those days for my son and one of those days for me when you just feel so defeated you don’t even want to try. We had moved to a new neighborhood and after a lot of searching found a speech therapist. On the first visit, she politely asked us to find another therapist because Vedant was “a handful” for her. His special needs school he was attending had been asking me to find him a new school because he was “too low-functioning” for them. Vedant was having a rough phase. I knew something was bothering him, but I was unable to do anything except watch helplessly. His distress often ended up in him, out of all the pent up frustration, grabbing my hair.

It was one of those difficult times when nothing seemed to go right. However, I had a household to run and so had to go grocery shopping. While I was waiting for my turn at the register, Vedant suddenly started crying and grabbed my hair. He has a death grip when he wants (I must be feeding him something right!), and as he pulled in all directions, I withered in pain, unable to peel his hands off me.

I could feel all eyes on us, except one — the lady in front of me at the register.

She turned around, looked at me with the gentlest of eyes and asked if I wanted her to help me get stuff off my cart for checkout. I nodded my head, still trying to calm him. When Vedant felt better and freed me of his grip, I went ahead to pay, but the cashier said the lady who had emptied my cart had already paid for me. It was then I noticed that she was waiting for me with my cart while she had another store associate push her own. I went to thank her and pay her back, but she adamantly refused. By now, Vedant had settled down too, and my head with a disheveled mop of hair could think straight again. She asked if she could walk with me to my car. I gladly agreed. She said, “My son is on the autism spectrum too. I understand.” I forced a smile of acknowledgment and walked along.

We walked to my car in silence. She said nothing, but I could feel the warmth that radiated from her. It touched my heart. She did not try to do anything over-the-top to make me feel obligated — talk too much, sympathize too much, preach or try to be condescending about the whole situation. She was there by my side, like a strong support. I couldn’t have asked for anything more at that moment. I just wanted someone to shield me from everyone else, and she appeared.

There was healing in that silence. We reached my car, and she nicely stacked everything in my trunk while I buckled up my son in his seat. I went back again to thank her. She gave me a hug — the warmest and the most honest hug I have ever had — and said, “God loves you.” Then she quietly walked away.

I did not ask for her name or her number or notice where her car was parked. I was too overwhelmed. I watched her walk off, and then I went into my car and cried. I have no idea what those tears were for. Were they tears of exhaustion, of defeat, of fear of failure, of embarrassment, or were they tears of joy, of gratitude and of thankfulness? I’m not sure. All I know was that crying felt good.

Since that day there have been several occasions that Vedant has had a rough moment in a mall or a park or another grocery store. But I no longer feel as overwhelmed as I did that day. Not embarrassed either. I don’t know how that incident affected me, but it changed me to believe I have a kind soul watching over us, and it will come to our rescue when I really need it.

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When Bedtime Brings Clarity for My Son on the Autism Spectrum and Me

The tension in his little body is visible. I know it is going to be a difficult day. When auditory processing is not easy, it is difficult for him to follow direction. If motor planning is harder today, he might be aggressive, moving his body in frustration.

Today might be a struggle for him.

To help him through this day, I will need to be vigilant with his sensory diet. We will do his brushing and lotion routine when he gets dressed. I will be sure he gets his feedings and medicine right on time. He will do his spinning and his jumping. I will need to provide plenty of opportunities for hard work.

If today is a struggle for him, there will be constant bickering between he and I. He will be sassy and demanding. He will fight every little thing that we need to do, even if it is something that he ultimately wants to do. I will constantly be separating him from his sister. I probably will need to hold him down to get each tube feeding started, while he attempts to kick and punch me. He gave up naps when he was 18 months old, so there will be no break today. I cannot leave him for a moment because I don’t know what will happen, so there will be no cooking meals, solo bathroom breaks or a shower.

Today might be a struggle for me.

We will both meet the end of the day with exhaustion. He will fight bedtime at first, but the routine of bath time, brushing, lotion and lights-out will calm him. When the lights go out, we will say his prayers together. I will ask him to tell God what he is thankful for. He may or may not be able to verbalize an answer, so I will help him. He will drive a little car up my arm and tell me he loves that arm. He will put one hand on each side of my face and pull me in for a kiss. After his kiss, he will tell me he loves me. When he asks me what we should do next, I will tell him that we should go to sleep. He will reply, “OK, Mommy,” and cuddle his face close to mine as he closes his eyes and drifts off to dreamland. As I listen to his breaths become deep, I will thank God for those sweet moments with my darling boy.

It is in those moments that the stress of our day melts away. If it weren’t for those moments, our day would end with tension and exhaustion. Instead, we are only left with love as we rest up to start anew.

Tonight we revel in the clarity of bedtime.

Follow this journey on Little Mama Jama.

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I'm Not Asking for Autism Awareness. I'm Asking for Acceptance.

I have written my entire blog around the theme of being “Anonymous” because many autistic people feel invisible, unseen and anonymous in the world. Autism is an “invisible disability,” meaning you can’t tell someone is autistic unless you ask them (or know autism very well and are paying close attention).

People have awareness of autism – they know it exists, they know autism is a popular conversation, and its prevalence seems to be increasing. In 2014 it was estimated that 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism spectrum disorder (ASD).

People know autistic children can have trouble in school and may be prone to meltdowns, but they don’t understand what causes a meltdown. Being aware that autism exists and having acceptance of autistic people are two very different things.

October 10th was World Mental Health Awareness Day – but today I am not asking for more awareness. What I am asking for is understanding, true understanding, and acceptance.

Accept me.

When I am staring at you blank faced because I did not understand what you just said, give me some time to process your words. Sometimes my brain works on a delay. It doesn’t mean I am not listening.

Don’t automatically repeat yourself. I may ask you for clarification. I might have heard you wrong. I’m doing my best. Don’t get frustrated if I ask you to repeat something.

I’m not Rain Man.

I shouldn’t even have to say it – but most autistic people are nothing like Rain Man. Some of us have unique skills and abilities, and some of us do not. No two autistic people are the same, and I can’t go into this without ranting because I get the “You’re nothing like Rain Man!” comment far too often.

Understand me.

Sometimes I have a hard time verbally expressing myself. It is hard for me to come up with on-the-spot conversations or talk about my feelings. Words do not come from my mouth easily – if I am talking to you, my brain is working hard and I am doing my best.

If I am not talking, don’t take it personally. Sometimes, if I am worn down and if I am tired, the words get stuck in my mind as if traveling through glue. By the time the words are ready, they are no longer relevant.

Don’t underestimate me. 

I do have some unique challenges, abilities, and disabilities. My brain works differently than most of the world, but I am not “stupid.” Sometimes people talk down to me or talk to me like I am unintelligent. Technically, despite problems with my working memory, I am an adult, so being talked to like a child is extremely offensive.

There will be things I cannot do from time to time and tasks I may find difficult, but I always try my best and do my hardest. On occasion I may ask for more time to complete or learn something new, but in general I tend to be unstoppable once I set my mind to something.

Stop asking me to blend in (and don’t compliment my ability to hide my autism).

I can blend in if I have to, but passing is a lot of work and takes up tons of mental energy. Let’s say I have 12 spoons to get me though my entire day. I only have so many spoons available to me, and passing costs me about one spoon per hour. I need to save my spoons and  “passing” is too costly. (Please read “The Spoon Theory” written by Christine Miserandino if you have no idea what I am talking about.)

This world was not made for me. Our school systems teach us to blend in, sit still, and follow the crowd. This push to conform has haunted me all my life, and eventually, when trying to blend in finally failed, I ended up with an autism diagnosis.

Let me be me. It’s been hard for me to learn to accept myself. Asking me to blend in, to fake it and be “less autistic” makes me feel as if the “real me” is not good enough. I won’t do it anymore – nobody should have to feel ashamed of they way they were born.

My Mental Health Awareness Day wish – more than anything I am putting out a deep wish for true acceptance. Being aware is not enough. It is important that we accept people as they are.

Editor’s note: Because World Mental Health Awareness Week is also referred to as World Mental Illness Awareness Week, The Mighty and the author of this post just wanted to clarify: autism is not an illness, nor does it require a “cure.” It is a neurological difference, which is why we raise acceptance for it on World Mental Health Day.  

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