artwork by hilary krzywkowski

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.

Follow this journey on Anonymously Autistic.

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Working in retail for some can be hectic, stressful and overall an unpleasant experience. Having autism and being in that busy, hectic environment can take a toll on some. But for me, despite the challenges, it has helped do the things I never thought I could do.

I work at a big-name pharmacy I usually do the checkout. I help customers make sure they have everything OK, and I work the register. Now, when I mention the register, that’s a big accomplishment because doctors and teachers thought that was a skill I could never do. But look at me, I’m doing it. Do I make mistakes? Yes, but instead of being hard on myself, I pick myself up and keep going at it.

One thing working at the pharmacy has done is helped me stay strong and not give up. One time I had a nasty customer who threatened to have me fired all because she wasn’t getting what she wanted. Now normally when people yell at me, I get red in the face, the tears start building up and I end up crying. But I wasn’t going to let that happen, and in that situation, I didn’t. I continued to have a good day.

Working in retail has really helped me remain happy but also be strong and not let negativity bring me down. I have a great group of managers who have taken the time to understand me as an employee with autism. Some I see more then others, and the two I see the most have really made a difference. One of my managers is so great. She reminds me every day that I should be proud to be me, and she really reminds me that working hard and having a positive attitude is the way to go. She also always tells me if you run into negativity, don’t put up with it. Instead, get rid of it because life is too short. She is just something special, and she brightens my days. She’s like my everyday hero, and she has helped me become a hardworking person. The next manager and I are total opposites. Sometimes I have trouble being around someone who is dry-humored because I don’t always understand it, but I do work on it, especially when I work with him. He is another who really wants me to be the best at my job, and he never wants me to be stressed out or unhappy. At first when I did start to work with him, I didn’t think he understood me as a person. One day, I asked him if he ever worked with someone who has autism. He told me yes, then he said he did understand me, he just treats me like everyone else. That really meant a lot to me. I realized that maybe having someone opposite of you in your life is a good thing. He’s become my everyday hero, too. Both my managers have taught me so much. I feel honored to work with two such strong individuals who do a great job.

Working retail has brought me so much happiness. By overcoming challenges, I have more confidence. Whether it’s working with different people or dealing with customers, at the end of the day I know I always put 100 percent in. This can be an example for others who have autism to try something outside your comfort zone. Working at the pharmacy has really helped me overcome challenges. I feel great being a retail worker with autism because I’m setting the example that I can do anything I put my mind to. Autism doesn’t define us; it’s a piece of us. We can achieve anything.

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You don’t see the child who desperately wants to be compliant and “good” but struggles to keep it in all day, then explodes at home in her comfort zone with those she trusts the most.

You don’t see the anxiety that stays like a knot inside, as the world and other people can be unpredictable, which leads to an overwhelming need to be in control of the world and those around her.

You don’t see how that very same anxiety, when built up enough, leads to the inability to face going to school or participate in much-loved activities until the “knot” has melted away enough to move on with daily life.

You don’t see that the child who is refusing to speak or engage with anyone or maintain eye contact, who may seem rude, ignorant, or antisocial, could actually be in shutdown and struggling to deal with surroundings. He may be desperate to join in but unable to due to his sensory overload or anxiety.

You don’t see the absolute need to know what is coming next to avoid the unexpected and the worry that comes with it.

You don’t see the strict and complicated routines that accompany things as simple as getting in and out of the bath, going to bed, leaving the house and meeting dogs in the street. Every. Single. Time.

You don’t see the exhausting, continuous warnings and countdowns given numerous times through the day to get through to the next part of the day without meltdown.

You don’t see the child who finds it more comfortable to sleep on the floor or with no clothes on than in a comfy warm bed.

You don’t see the child who wears the same things every day for comfort yet has a wardrobe full of lovely clothes to choose from but who can’t throw out of any of those clothes as they mean too much.

You don’t see how the “fussy eater” is actually a child who finds certain textures and smells very difficult to manage… or the years spent trying to increase the “acceptable foods.” It’s not as simple as forcing that child to eat what is in front of him.

You don’t see the child who worries about and thinks about death excessively but keeps it to herself for fear of it coming true.

You don’t see the obsessive resistance to simple everyday demands, like being asked to eat food, start a new activity or get dressed, the inability to “just do” what has been asked, without causing a fuss or delaying as much as possible due to anxiety.

You don’t see the objects that absolutely have to be collected, carried, displayed and kept, to feel at ease and comforted by the familiar and calmed by the order. You don’t see the inability to throw anything away, no matter how insignificant it seems to you, even empty packets and what you may call “rubbish.”

You don’t see the all encompassing intensity of the interests and obsessions and the need to share it with anyone willing to listen.

You don’t see the confusion or distress as to why a person may have behaved or reacted in an unexpected way.

You don’t see the rigidity of thought and inability to stray far from that expectation or pattern without invoking panic or anger as a result.

You don’t see how the child having a “tantrum” is actually overwhelmed, or upset because something doesn’t make sense, has changed without warning, or is out of order. Sometimes the demands have just become too much to process. You don’t see that the parent trying to deal with it, doesn’t need your stares, comments or judgment to make her feel any worse than she already does. This is a meltdown, not a tantrum. It isn’t about getting her own way – though it can sometimes be about controlling her environment to alleviate the anxiety inside.

You don’t see the build up of fear, anxiety and helplessness as a meltdown is triggered, building like a wave, unable to be stopped. You don’t see it come crashing down catastrophically, unpredictably, sometimes lasting for hours. The need for space, calm, unending patience and understanding but displaying itself in kicks, punches, scratches and lashing out verbally, anything to end the feelings of confusion before it finally ebbs away.

You don’t see the self-hate, recrimination and regret that comes after that meltdown, the desperate wish to take back the words and actions that were totally beyond any rational control.

You don’t see the tears, the frustration, feeling “different,” “weird,” “abnormal,” and “inadequate,” when actually he is a kind, loving and unique and exceptionally clever in so many ways.

So what do you see?

You see a happy, confident and chatty child. You’re seeing the need to be accepted and liked and to fit in, a child who is clever enough to have learned the “social norms.”

You see a child who enjoys drama and pretending – who is good at taking direction and acting the part. You’re seeing the child who finds it easier to deal with scripted interactions and conversations.

You see a “normal” child who has her moments – like all children – but is generally well behaved. You’re seeing a child who saves his worst times for the safety of home and those who understand him and won’t judge.

You see a polite child who can converse well with adults. You’re seeing a child who finds interactions with adults less unpredictable and confusing than with peers.

You see a tiny snapshot of time where she can hold herself together long enough to pass as “neurotypical” – like you may be.

You see what you want to see. You see the mask.

A version of this post first appeared on Steph’s Two Girls.

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Thinkstock photo by Jupiter images

Last month was the second anniversary of my son’s diagnosis. At the time, I was tired and stressed, questioning my place at North Dakota State University (home of the Bisons) as a graduate student. I had a full-ride scholarship — but still, how was I to find a daycare to go to class and work? There were multiple times I was told my son could no longer access the daycares available, and that his needs were more than what the daycares we visited could meet. Finally, when the second one in a month told me to get my child medically evaluated, I was told, “Your son has autism and sensory processing disorder.”

I’ll admit that I didn’t quite know what those diagnoses meant in their entirety. I’ll admit the first time I ever Googled “autism” was after my son’s diagnosis. Those are not things I am proud of these days, but they’re the truth. I just didn’t understand. I wasn’t told in terms that made sense to me at the time. I was uneducated and felt so alone as a single parent. I felt like nobody I knew at that time quite knew what I was going through — at least not that I knew of…

The one thing I really struggled with on diagnosis day was the label: autism. I knew the diagnosis didn’t change who my son was on the inside, the compassionate boy I know and love. But I was afraid people would judge him over the label. Would people see my son for who he really is and not for the diagnosis he has? It was the fear of the unknown. It was the fear of people judging him before they really knew him.

The same day my son was diagnosed, we were referred to the ND Autism Center. They took him for a daycare observation day. I chose to go to work while they observed. As I sat at my desk that day, I dreaded talking to you. I dreaded having to tell you my student organization days were over, at least for that time. When I finally mustered up the courage to speak to you in our student organization office, I asked for your privacy. It was there that I finally broke down into tears. As strong as I tried to be through it all, I finally let myself be vulnerable in front of someone. You were the first person I felt comfortable enough to do that in front of. Through the tears, I confided in you the news of the day, the fears of judgment, as well as my fears for my son’s future. I told you I didn’t know if I would remain in school and if I could afford a specialized daycare program. I felt like home was where I was most needed. You sat and listened to me speak without interruption. You let me feel heard.

After all was said and done, you turned to me and said the most impactful words of my life. “You’re both going to be fine. You’re going to be able to do this and remain here in school where you belong. I know you’re scared of how people are going to view him, but they will see your son for who he really is. He will be able to accomplish anything he puts his mind to. The diagnosis just means that he will start getting the extra support that he needs. You want to know how I know all of this? It’s because I’m autistic too.”

I was awestruck. I had been friends with you for months and had never known this about you. You confirmed that despite my fear, we could overcome any challenge that comes our way. Autism isn’t something you can see — it’s different from child to child. You taught me that labels don’t define the child — they can also serve to help. You helped me see I needed to educate myself about ASD and sensory processing disorder (SPD) to fully understand what my child was experiencing and how to help him. You gave me the hope I needed to keep pushing forward.

Here we are two years later, and I am approaching my graduation soon. I will be the first Ph.D. in my family. My son started his first school sport, and he is doing very well. His coach says he just loves his enthusiasm and his eagerness to practice. He is successful in many ways. We both are.

You helped us get here. In all my years of university, the most valuable lesson I have been given was one learned outside of the classroom. It was learned in a small hallway by one of my peers.

I guess what I am trying to say here is thank you for teaching me my most valuable lesson so far as a parent. Thank you for telling me everything was going to be OK. I now know every word you said in that tiny hallway was a deeper truth than I could have ever imagined. Thank you for showing me the strength I had in myself. Thank you for showing me the true strength of the herd.

Sincerely, the fellow Bison,

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Image via Thinkstock Images

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