woman having a meltdown at her desk in the office

The woman on the phone was not listening. I had called her for help and quickly realized she would not be able to help me.

I told her, “Nevermind. I’ve made a mistake. I’m going to let you go.” She kept asking questions. To every question she asked I said, “I don’t know. I don’t have any more information. I am going to let you go.”

She kept asking. I told her again, “I need to let you go. You cannot help me.” Her overly helpful insistence that I not hang up the phone was about to make me blow up.

Finally, in a harsh tone I told her, “Look — I was trying to be nice, but I am hanging up now, because there is nothing you can do for me.”

I slammed down the phone and ran quickly out of our office in a panic. My heart was beating fast and my mind was racing. Everything was a blur. I wanted to scream, cry and hit someone. More than anything, I wanted to get away and be alone.

Run. Run. Escape. Escape

Bursting into the hallway, I frantically looked both ways. I wanted to go someplace without people. The bathroom? Elevator? Emergency stairwell!

Hyperventilating, I burst into the stairwell. It was dark and quiet, as most people take the elevator. I ran up and down the stairs until finally I collapsed exhausted on the bottom floor.

I sat for a moment, curled in a ball, rocking. Grateful for the moment alone, I sat breathing in and listening to my breaths.

Coming back to reality and feeling much better after my tiny explosion (this was a very small meltdown), I realized I had left my key card in the desk as I ran out in a panic, so I exited the stairwell and took the elevator back to my floor.

Back at my desk, I sat down like nothing ever happened — as if I hadn’t just had a meltdown at work.

When an autistic person is having a meltdown, they are often unable to think clearly. The fight or flight response is triggered, so forcing them to engage with you may actually cause more stress.

We are all unique individuals, but I like to be alone during a meltdown. If I get up and run away, don’t chase me — this is flight, and if you corner me my brain can switch to fight. I’m on autopilot, and running has become the way I protect myself (and those around me).

If I’m having a meltdown, please do not touch me. My senses are whirling out of proportion, and I am not thinking clearly. I may become unable to communicate other than one-word answers, and trying to communicate makes me feel worse — so don’t ask me to explain what’s happening. If you are in the room with an autistic person having a meltdown, I’d recommend turning off the lights and getting them a blanket or pillow and some space. A favorite stim toy might also be a good thing to offer.

You can stay in the room if the person you are with does not mind, but give some space and sit quietly. Accept that they can’t control what is happening to them. Sometimes we feel the meltdown coming, but other times it can hit without warning.

Once started, the meltdown has to run its course. Just wait; let me meltdown and don’t try to stop it. We may feel tired after a meltdown, but sometimes we can feel relief, as the pressure may have been building for quite some time.

Remember, as hard as watching a meltdown can be for you, having a meltdown is horrible for an autistic person. The pain is mental and physical. Autistic people having meltdowns are in crisis mode, and our brains are lashing out at us. We don’t mean to be out of control and are often embarrassed after having a meltdown.

Image via Thinkstock.

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Over the years as a motivational speaker and autism advocate, I’ve been able to meet some truly amazing celebrities. Two of my favorite experiences have been chatting with Luke Bryan and talking fashion with Tommy Hilfiger. The celebrity I met who truly blew me away, though, was none other than the multitalented Anna Kendrick.

I’ve been a fan of hers for as long as I can remember. I can relate to her quirkiness, love of theater and her passion for music. Music and theater were two of my biggest passions growing up on the autism spectrum. Because of that, when I heard she was coming to New York City for a book signing for her new book, “Scrappy Little Nobody,” I knew I had to be there.

Weeks became days, and before I knew it, the day had finally arrived when I was going to meet her. I showed up to Club Monaco about an hour and a half early to make sure I could be one of the first people to meet her. It was absolutely freezing that night, and my friend came down with laryngitis, so I was flying solo. As the time arrived to meet her, I was shaking, and I couldn’t decide if it was because of nerves or the cold. I found out when entering the store that we were not only getting a signed copy of her book but a photo of her, too!

When it was my time to meet her, she gave me a giant hug and a big smile. I told her about my several jobs and about my life growing up on the autism spectrum.

After hearing that she said, “OMG, you are awesome! I’m so glad you get to do what you do,” and then she clapped her hands and did a small jump to show her excitement.

Her response almost left me in tears.

With my mouth half open, I wished her well and left to get my photo from the photographer. I’m pretty sure I blacked out at that moment, because I can’t remember any more details from that night until I was on my train home and reading the first chapter of her book.

It wasn’t anything extraordinary that she did, but it was just her telling me what we do is making a difference that made me overjoyed with gratitude. For someone who grew up being a victim of bullying, having emotional challenges and never considering myself “awesome,” having someone so talented tell me that will be something I’m always grateful for.

If she ever reads this, I would just like to tell her thank you. Her genuineness and energy is something that I think left a mark on every single person she met that night and will continue to do so in the future.

We need more people out there who show kindness to others, so if I ever need an example of someone who embodies that, Anna Kendrick will be the one I mention. For those reading this, I say lead by her example, and remember to tell the people in your lives how awesome they are. Lift them up when you can. Trust me. It can make a world of difference. I know it did for me.

Image via Contributor.

A version of this post originally appeared on KerryMagro.com.

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It’s not uncommon for kids with autism to have a special interest in trains and transportation. To foster this passion, the New York Transit Museum has created a program just for children on the autism spectrum.

The museum’s Subway Sleuths program is an after-school and summer camp program for students grades 2-5. As part of its programming, Subway Sleuths uses participants’ special interest areas to help develop peer-to-peer interactions and social skills. “Because trains are a popular special interest area of individuals with autism, the New York Transit Museum is the perfect setting for this type of developmental work,” Elyse Newman, education manager for the New York Transit Museum, told The Mighty. “A passion for transportation and trains is a requirement for the program, for that shared interest serves as the glue that brings the students together.”

Creating a program for children on the spectrum was an obvious choice for the New York Transit Museum. “Nearly seven years ago the Transit Museum recognized that children with autism and a special interest in trains were coming to the museum frequently,” Newman said. “While the Museum clearly was a place of excitement and comfort for these children, the Museum didn’t have programs to directly engage them in ways that met their learning needs. Given the lack of after school opportunities for children living with autism it seemed obvious that the Museum should develop a program to give participants a positive, fun and supportive environment when they need it most – during out-of-school time.”

According to Newman, each session starts with a visual schedule, allowing participants to manage expectations and group collaboration. After discussing the schedule, each child gets to participate in two activities. Activities focus on partner work and include designing a giant subway map, taking and reviewing pictures and games involve non-verbal communication like using hand signals and facial expressions to assemble toy train tracks.

The Subway Sleuths program is deliberately small, with each semester enrolling a total of 18 students per 10- to 12-week program. Those 18 students are then divided into three groups, each led by a special education teacher, Transit Museum educator and speech language pathologist. Each semester costs $350 to $450, depending on the length of the course. The program also offers scholarships for those who can’t afford the program.

You can learn more about New York Transit Museum’s Subway Sleuths program via its website.

I’m writing this from a place inside that is flooded with tears. The walls are buckling and soggy, the plaster’s turned to grey paste, the lawn looks like a marshland, and the sky is dim and cloudy with more tears in the forecast. This place has many names, some of them are: Shame, Grief, Not Good Enough, Fear of Loss, Torture and The Insufferable, Borrowed Time. There is also an immense amount of love bound up in this place.

In this dark place glows an almost completely hidden light. The light may be concealed by the fog of post-traumatic stress disorder (PTSD), anxiety, depression, physical pain, and the neurological and social challenges of my autism, but there are golden, luminous threads that radiate from the light’s persistent beaming. They are strong threads. They cannot be severed, and they hold my broken heart together.

artwork by hilary krzywkowski

Their function is one with their beauty, in that they can connect paradoxical states of mind while resilient to all climates and seasons of emotion. The connection between these magical threads and my heart is one created by miracle or an arrangement of cosmic law; in other words, its genesis is something sublime and beyond my fathoming.

This connection is what I call the bond of unconditional love. It pushes all of my boundaries, it has me acting against my own interests, it is an unpredictable force of nature — my wild card. I find I do the things I’m most terrified to do. With the realization of this innate power, though the voices of doubt and trauma poke, make jest and attempt to have me think otherwise, I know I cannot fail at this most challenging and epic journey known as parenthood. I must give parenthood all I’ve got. I do struggle to be out and about, dealing with adults and other parents who don’t seem to understand or respect me, adults who sometimes do not even understand and respect my children. I do struggle with my own cognitive differences and sensory sensitivities, which can affect my daily life in child rearing. It does add another layer of difficulty that may not exist for other parents. But that light I was just describing, it plummets deep into my fears of “How will I look?” or “How will I react?” or “Will my best be good enough?” or “Am I strong enough?” — and it connects me to deep-seated instincts that still exist even beneath all of my challenges. I find that, come what may, I rise to the call.

I’ve never fought for myself, but I’ve found strength to fight for my children. As a youngster and adult, I never held my ground or fought back against the bullies. Physically beaten and emotionally conquered, I could not utter one word for “help”; I could never advocate for myself. My speech impediment and selective mutism were not easily endured, and there wasn’t an intrinsic mechanism to reroute communication any other way than through my art and writing. Now, as a parent, I’m finding there’s a flame inside me that powers this person that I am, that acts on the feelings and instincts stirred whenever my children need me.

artwork by hilary krzywkowski For a while now, I’ve been rooted in deep reflection over the traumas that have added an extra layer of struggle to my life. From my traumatic initiation into parenthood with the complicated pregnancy and birth of my first child back in 2008, I was shocked by the extent to which my autism wouldn’t be tolerated by people in my life. And as I’ve learned in this past decade, through the unfair outside assessments of my marriage, sexuality, fertility and the rearing of my children, there can be little respect for the life and autonomy of the autistic adult. In my experience, to be a parent on the spectrum is to face some level of systematic discrimination and abuse. Only after I was able to raise my family up from the damaging relationships tainted by ableism and prejudice, only after I found the inner strength and financial resources to distance myself and my children from abusive family members and people in our lives, have I begun to really own my unique abilities as a parent — which are doubly remarkable, considering two of my three children are also autistic and often have need of my strength and insight.

artwork by hilary krzywkowski

While in many respects I currently feel the emotional age of 16, there are many parts of me that are maturing rather quickly now that I have the freedom to explore my strengths, make peace with my weaknesses, and begin to understand my self and its place in this world as a worthy person and parent. Now, every layer of worldly experience — both inward and outward — is colored by parenthood. Even the art and writing processes that have previously only ever been about healing from the abuses and traumas that coincided with having a disability now begin to shift to managing the rapid-fire changes in the daily routine I’ve clung to in order to give structure to my thoughts and emotions. I am finding new ways to achieve the same end, and that isn’t necessarily a bad thing (though sometimes it can induce almost unreal amounts of stress).

Living alongside, loving, educating and caring for children who are also autistic helps me to understand my abilities and limitations differently. In close interaction with my children, I see that while I can struggle greatly from having my capacity for function limited by what are many times imposed outer factors (having to adapt to an outside environment and social structure created by the ideologies of ableist culture, for example), these are realities that have the potential for resolution given enough therapeutic, reaffirming experiences and healthy, non-abusive interpersonal relationships.

As a home-based educator (you might call me a “homeschooler”), I have a front-row seat to my children’s blossoming personalities and abilities. It amazes me how unlike my childhood their childhood is! With an education that doesn’t involve shaming or competition, I’ve observed how their autism becomes more of a series of abilities, sensitivities and considerations (with boundaries that must be shown respect) rather than a disabling condition. As another parent with autism reassuringly put it across to me:

“One of the best things going for our children is being raised in a home where they are not the minority and are actually “the norm!” And where mom knows how to really listen with her eyes to understand what isn’t said directly with words. You are doing a good job, Hillary! And we do carry baggage that can make us feel more isolated… but it is that same baggage that makes us uniquely qualified to be just the kind of parents our children need. We might not show them exactly neurotypical behavior, but they will grow up loving themselves. And that is far more important!”

Oh, how I needed to hear that! The only empowering words I have ever heard about parenting that seemed to fit me like a glove come from another parent with autism!

artwork by hilary krzywkowski

In deep reflection over my life — my struggles with my autism in society at large and in relationships, my traumas, and my choices — I realize I’ve quite a legacy to bequeath to my children. Bundled within that gift is the wisdom inherent in autism: life lessons in love, respect, relationships and how to honor boundaries. My legacy is in my genes, my attitude, and the dreams and promises I have yet to fulfill. This legacy is a shared life’s journey with remnants of ancestral wisdom lining the survival packs that we know we’ll have to pass on one day. I feel blessed to be so connected to my children, and to know we share something unique and beautiful for all the struggle we have to surmount on its account. In my darkest hour, I never considered my autism will be part of my legacy. Now that I’m inching towards mid-life, looking the ever-questioned realities of my own mortality and life purpose in the eyes, I see that it is. And I would never change that, even if I could.

artwork by hilary krzywkowski

All images are original artwork by Hilary Krzywkowski.

A version of this post originally appeared on Healing Hilary’s Heart.

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In my experience, people tend to think conditions like ADHD, dyslexia and hyperlexia only affect children. People often still think autism only affects children, but then what happens to these kids when they grow up?

We learn to cope with, compensate for and manage our differences, but they are still there.

I’ve always been hyperlexic. My verbal comprehension has improved greatly since I was a child, though I still have auditory processing difficulties. Even though things are much better — I’ll always be hyperlexic.

According to the Center for Speech and Language Disorders:

”Hyperlexia is a syndrome that is characterized by a child’s precocious ability to read (far above what would be expected at their age), significant difficulty in understanding and using verbal language (or a profound nonverbal learning disability) and significant problems during social interactions.”

It’s a good thing I love reading.

It is beyond frustrating to have so much to say and not be able to express things in face-to-face conversations. When I try to talk, it’s as if I know the information, but my brain is holding back the words.

My arguments are often ineffective and unpersuasive, and the words can come out making me sound uneducated and shy. I cannot beg or force the words. Nothing helps when the words are unavailable to me.

I am not the person people see in these moments — I am the voice behind my keyboard.

The thoughts and information are still inside, even when I cannot express them as you stand in front of me.

I am so grateful for my keyboard. I am so happy I learned to type and write in school. This has turned my hyperlexia into something I’m thankful for.

I am so grateful to have found my words.

Image via Thinkstock.

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