A badge or a burden: the trauma we carry

adhd, ASD, atypical, autism, Complex PTSD, Homeschooling, mental health, motherhood, neurodiversity, parenting, PTSD, special education, special needs, special needs parenting, trauma

My friend phoned me to tell me what I expected. Her mother had been placed in hospice only days before but I knew. We only called each other when it was too hard to write what we needed to say or we needed to hear each other’s voices. Her mom was gone.

I sat in silence and thought about her family and my own. Trying to imagine what my friend was feeling at that moment. Thinking of how many struggles she had endured in so little time. How the length of our friendship was colored by so many of those for us both. I began summarizing in my head all of those traumas in my own life and began with the one that my family thought was amusing and I found painful still. Our move to Oregon (but that’s a story for another time) and touched upon the one that truly shaped me from that day forward.

I’ve had PTSD since I was six. It began the moment I watched our family home burn to the ground. Frozen in place, listening to the sounds of my mother screaming and keening. I would like to say things improved from there but they didn’t. So I learned to expect another crisis around every corner and that good luck was for other people. It took years to unlearn this thinking, a diagnosis of Complex PTSD
, and the acceptance that we all have our sorrows and come 1through life wearing our setbacks as a badge or a burden.

The layers of trauma changed in variety over the years. The moments compressed into me like the striation marks in the earth. Ever changing, ever present, and unbidden. Once a source of shame and now simply marks on my body like the remnants of pregnancy or aging. Something I can acknowledge and feel a sense of achievement from or something I can hide and only deepen the pain brought on by seeing them in an unkind light.

Listening to those dark, ugly voices of criticism in my low moments can dtill happen but I’ve learned to question those voices and quiet them with kindness for myself. Those same voices that lurked throughout my childhood are now gone but the memory of them haunt me like tinny piped music. I can choose to escape them or confront them but I acknowledge that the hurt from those people marked me but hasn’t marred me.

Now, as a mother, I feel as if I have a new terrain of PTSD. The terrain of trauma sustained by my children. The bullying, the attacks, the judgement.

Accepting my children’s neurodivergence wasn’t difficult. Accepting the treatment they receive from others is something I have to fight on a daily basis at times and it can feel insurmountable. From strangers to doctors, to teachers to extended family, we’ve had a litany of interactions where we’ve had to navigate the misunderstandings around autism and tolerate or battle the misconceptions people have of autistic people.

Whether you’re neurotypical or neurodivergent, misunderstandings happen constantly but the difference is that I can process this and respond whereas my kids, by in large, cannot. The lag time in processing in combination with their trauma compounds into a snarl of frustration that results in simply being overwhelmed to the point that they shut down or melt down. Many of us can relate to this feeling but not to the extreme that they experience. Their experience is our version of being tongue-tied amplified by the thousands. Take that feeling and color it with trauma and they end up blaming themselves for not being able to keep up or join in a mundane conversation.

It was during one of these interactions recently that I had an epiphany. Because autistic or otherwise, trauma colors our filter of the world for better or worse and that filter never leaves us but can unexpectedly be a strength. For instance, and I’ll freely admit I’m biased, my kids are the most thoughtful and forgiving souls I’ve ever met. They will go out of their way to be kind to others and generous to a fault. Their struggles to find and keep friends haven’t hurt them but made them more empathetic towards others. Maybe a little too intensely at times, but all and all, to their betterment.

After three long years of trying to make public general education work for both of our kids we made the hard decision last year to place our son in a self-contained classroom and opt out of school completely for our daughter and it’s been the best decision we could have made for either of them. I had many doubts seeing that I knew little about special education three years ago and never intended to homeschool and was always an advocate for public schools. Especially the strong belief of staying in your neighborhood school yet when that school doesn’t want your child to attend, and makes it clear that they are not willing to accommodate them, you’re not left with many choices.

I feared that she would be socially isolated, bored, or – worse – regress if we homeschooled. To my relief, none of that was true. Except for she admittedly became lonely until we found independent studies and activities for her to join with like-minded kids. (It’s no easy feat to find other eight year olds who want to read history books and knit. We found the first and the second request was met by her making friends with the “Chicks with Sticks” club at her grandmother’s assisted living facility.)

We allowed her to unschool for a year and then gradually added academic structure back into her life. It’s made a world of difference not only for her but our entire family. It reinstilled her confidence and renewed my hope in her being able to attain an education and a sense of fulfillment. Her trauma can be a source of learning and not an impediment to her growth.

For me, the nightmares don’t go away. I’ll never feel comfortable sitting with my back to a room full of strangers. I’ll never stop worrying that the horrors that befell me might befall my own children. Yet I know that they can not only survive but thrive, not in spite of, but possibly because of those challenges and have a deeper sense of kindness to show from their scars.

https://www.ptsd.va.gov/professional/treat/essentials/complex_ptsd.asp

What the &$#@ were they thinking?

autism, mental health, parenting

Out of all the mysteries in life there are four that never cease to fascinate me:  the human brain, what happens after death, the purpose of life, and all the people that I wonder, “What the &$#@ were they thinking?”

It’s a whole list of people that extend from childhood friends I regret losing touch with, exes that I still don’t understand, politicians and celebrities that detonated their lives, people that don’t know how to navigate a busy sidewalk, and the creeps that take up two parking spaces.

These last few years have been tumultuous. This is unequivocally an understatement. Many moments this little world of mine has shifted on the axis and I can’t help but imagine a large hand tipping our globe off its stand and letting us roll under the couch. I’ve had hard times in life where I wasn’t sure how I was going to get through yet I did. Not without help, or humbling myself to be vulnerable, but I managed.

That’s what we all are supposed to do, right? Manage, keep going, hope it gets better. What does better look like though? Is that a way to live? What example am I setting for my kids if I’m perpetually in a state of hoping the next day will be better and simultaneously acknowledging that the present is unpleasant?

Here’s what I’m hoping better looks like. A school that my kids can safely attend. One that is accepting of them and cares about them that doesn’t cost $40,000 per child a year. Finding other families with kids on the spectrum that get it and get us. A house that isn’t falling apart. (I love you house but, c’mon, what the &$#@?)

Mostly, I wish I didn’t go to bed at night worrying about what might happen to my kids if something happens to me. I have no extended family that can support them. Friends that might but I hesitate to impose upon them such a promise. Any guardian would have to take on full time advocacy and coordination of care. I guess what I hope for, what I wish “better” looked like, was a world where I felt my children would be safe without me. It makes me wonder as I look at myself, “What the &$#@ was I thinking?”

Having kids is a cry of hope that the world will continually try to be better and do better. Let’s all hope that this is true despite our current circumstances in my little world and all of ours.

Then a moment came recently that reminded me again of how poignant an event can be with clashing emotions juxtaposed with bursts of clarity that leave you feeling like a small blade of grass weathering a storm, a rainbow, and the sun all at once. One of my dearest, most intimate friends, lost her spouse to suicide. I’ve never seen strength like hers. She weathered so much in such a small amount of time but it took my breath away to watch her take each of her children up to say goodbye to her deceased husband.

We manage and we keep going because there’s always more to discover, more mysteries to ponder, and more beauty to be found. She embodies this despite her doubts. She doesn’t see how strong she is but I see it every time she rallies against her grief yet still notices that her child needs their shoe tied, a nose wiped, a cuddle. Even as the darkest moments befell her and those sweet children they continued on, they found reasons to laugh, they cried, and they keep going. Storms pass, not everything can be understood, and you will always have people in your life that make you wonder, “What the &$#@ were they thinking?”

I don’t know where strength like that comes from. I don’t know why such awful things happen to such wondrous people or why mental health is still not considered part of our overall health. There are mysteries that bring us to tears and those that leave us in awe and there is beauty in both.

Learning the kaleidoscope.

adhd, ASD, atypical, autism, neurodiversity, parenting, special needs, special needs parenting

Remember when you were little and you first looked through the kaleidoscope? You might have wondered if you were doing it right. Maybe you didn’t see the appeal right off the bat and played with it for a moment only to discard it and realize later that you had the source of endless magical awe and delight within that rinky-dink cardboard tube of plastic colored chips and a mirror.

I still have moments of realizing I’m looking at things the wrong way round. That I’ve been missing out on joyous whimsy just by looking through the proverbial kaleidoscope in my grasp. The view of the world my children happen to possess. So often it can be maddening and seem impossible to slow down enough to see things from their perspective yet when I force myself to do so I rarely regret the decision.

It was one of those moments that I realized that staring at traffic isn’t half bad.

It was one of the last times we ever attempted to do a family outing together as a group. We’ve since realized that splitting up into separate groups is not only easier but seems to accommodate everyone so that the outing is enjoyable as opposed to surviving an undertaking. In truth, there’s only so many simultaneous meltdowns I can handle at once and I’m outnumbered. We all have to take turns being crazy around here and it’s never my turn.

It was at such a family outing that Owen had melted down and I offered to leave the museum exhibit so that my respective nerds could continue to play with the robots. We sat in silence next to each other on the bench. I offered what I could to help calm Owen down but he kept shifting down the bench away from me and I was afraid he would bolt into the busy crowd just down the stairs. Always a fear with someone on the spectrum who has a tendency to wander off. (And by wander I mean sprint headlong with no plan as to where he’s going and refuses to respond to his name or warnings of his imminent danger, see “elopement”.)

He scooted once more as a woman stepped sideways as she read the display plaques for an exhibit mounted across the walkway from us. The board was mostly translucent with images sporadically mounted but the view behind the display only partially interrupted. Owen had no interest in the logging history of Oregon or the earthquakes that have come and gone but the traffic of I-5 and the bridges we could see from our bench were as compelling as that exhibit was to the woman. Every step she took obscured his view. He was silently jockeying for position to view his traffic like a Mr. Bean episode.

I leaned down, pulled his headphones away, and quietly explained to him he could sit on my lap to see better or we could walk over to the window. He thrashed in confusion and frustration for a moment. I took his hand and walked him over and let him rest his head against the cool glass wall. He sighed. His shoulders relaxed. I played bodyguard and prevented people from pushing through or against him. He held my hand and started shouting out the trucks and sights that caught his eye. It’s his way of including me and I joined in to show I appreciated it but something wondrous happened. I started pointing ones out to him.

He spotted the colors and types of vehicles and I would point out the funny dog sticking its head out of the back of the car. The RV with the mismatched doors. The funny sign on the beer truck. The flow of the traffic was soothing. It became not all that unlike staring at waves.

He leaned against my leg and I stroked his hair. I knelt down next to him and he hugged me. In a small, weary voice, “I want to go home.”

We waited a few more minutes for his father and sister, loaded up, and headed out. It was the last time I took him to OMSI. I was looking through the wrong end of the kaleidoscope. He doesn’t want the loud, new, crowded exhibits or the cool play structures if it means dealing with crowds. He wants space, quiet, and room to explore on his own.

It’s difficult to find things for our family to do as a group so I’ve stopped trying, for now. I’m human though, it’s disappointing and frustrating. There’s moments where I think of something I’ve been wanting and waiting to do with them, show them, experience with them only to remember yet again that it’ll be too painful or overwhelming for them with their sensory issues. I guess it’s no different than a neurotypical parent disagreeing with their NT child over an interest. You like what you like.

I’ve learned to do outings with my kids one-on-one. If I let them come up with the ideas we all have a better time and the view can be surprisingly magical. So for my daughter it’s train rides, theatres, museums, parks when they’re not crowded, and quiet grown up restaurants. For Owen? It’s anything fast and sparsely populated whether he’s riding it or watching it from afar. I’m grateful they both like riding the train, amusement rides, but mostly that they share with me what they see.

Snowgasm

adhd, ASD, atypical, autism, neurodiversity, parenting, special needs, special needs parenting

Oh Portland, you silly worrywart of a city. Two inches of snow of unexpected snow, at best, and the whole world shuts down. I don’t mind. I love the snow and become as giddy as the kids as I await them to fling back the curtains and cry, “SNOW!”

We drag our one sled down to the neighborhood park for the “big hill”. This is a big deal for many reasons. Namely, it means taking on the complicated social skills of other children in the frenetic manic of snow. Not an easy fete for kids on the spectrum at any moment much less in the face of the delirium brought on by rare and wondrous precipitation. In my head, I call it snowgasming.

The first of many is the “sticking together” and “not running off” rule. This equated to them chasing each other down the hill as they took turns pushing each other on the sled.

I loved watching Owen run down the hill at the end of one of the rough descents to rescue “‘sista!”, ala-Parenthood (the movie), from the neighborhood bullies.

She didn’t need it though. She simply stood up and stared at them innocently. They looked up at me and I gave them “the look”. Ckenched snowballs were dropped and they walked away in a huff.

Owen held up a snowball and I hollered, “Rule #3!”

He yelled back, “I being kind!!!”

He scowled, dropped it, and growled at them. When they laughed in response he looked at me with wounded pride.

I tried to reassure him but it wasn’t enough. The boys’ parents were busy talking to each other and refused to make eye contact. I wasn’t going to let this ruin our day.

The bullies approached us again moments later, the parents didn’t intervene, and I calmly walked towards them to block their approach towards my kids and said in a low voice, “Get away from us.”

They muttered to each other and dropped the snowballs.

I looked over at Owen and he was staring at the ground smiling.

Leonora asked on the way home, “Why are some kids mean to me?”

I was honest, “It’s not you. Some people choose to be unkind because they don’t know any better, because they want to, or because they’re unhappy and want others to feel as badly.”

She smiled and asked, “Can you tell me a funny story?”

Her shorthand for changing the subject and asking me to make her laugh. It’s her way of coping when something upsets her. We bond over funny stories. Humor saves us all. That and remembering how magical snow can be for us all.

The right to be safe.

ASD, autism, equal rights, equality, freedom of speech, mental health, motherhood, neurodiversity, parenting, special needs, special needs parenting, Times Up

The article below was written over a year ago. I would like to say things have improved in the world but the most I can say is that things have improved in my daughter’s world.

She spoke up to us, not for the first time, about being bullied and attacked at school so we’re keeping her at home. Sometimes what’s best for our kids isn’t the easiest option but doing what’s right rarely is the smoothest route in life. I hope my kids see monumental changes in their lifetime of better mental healthcare, equal rights created and protected, and an end to sexual violence.

———————————————–

“Mama, why am I so different?”

For some reason I wasn’t expecting this question, not yet, not from my six year old. How can I explain to her and convince her of what I see and believe about her when everyone around her finds fault with her for those same reasons? She speaks softly and melodically. They tell her to speak up. She is achingly vulnerable without any guile and it terrifies me every day that she’ll be hurt by someone. They think it’s wonderful that she’s compliant to authority.

You see, she’s every teacher’s dream. A quiet kid who listens to directions and does everything she can to please them and doesn’t question authority. Yet she’s also the kid that gets forgotten, mistreated, fears speaking out, bullied, misunderstood, and is bewildered by the malice of others.

She “can’t find the words” and hits herself, “I’m a bad girl. I can’t get it right.”

She cries easily. Her feelings are often hurt. She feels so intensely the emotions of others around her that her stomach pains her with anxiety. This is autism in girls. This is what PTSD looks like in kids who have been sexually abused.

I love my daughter and accept everything about her but that doesn’t mean I love her autism, or my son’s, or my husband’s. Watching someone you love struggle to navigate the world is never a pleasant experience when it ends in tears or explosive tantrums. There are days where I feel like an incompetent ringmaster running from lions. Please hold my hat.

My least favorite moment recently was when a therapist asked, in front of my very verbal daughter with sensitive hearing, “How did you explain to her she was autistic?”

Sometimes I wish I could pause the world for my children so I could ream someone without them hearing my obscenities. I managed to bite on the inside of my cheek and ask, “Good question, she can hear you so why don’t you ask her?”

Nora smiled good-naturedly, waiting patiently, as the woman blanched in embarrassment. We continued the appointment and I suffered through yet another barrage of convince-us-your-daughter-is-autistic. It’s a great game, it only costs hundreds of dollars an hour, no one wins, and it always ends with, “Oh, yeah, she is…”

Diagnosis isn’t a one shot deal. It’s a process where you try to convince people of what you’ve observed and they test your ability to stay calm as you struggle to understand what the !$#% is going on with your kid. We’re at the tail end now and facing more therapy as we try to grasp at what we can do to make her life easier.

Accepting your children’s autism has little to do with yourself and more to do with what choices you make for them. Constantly debating when to get out of their way and when to push, when to go mama bear on their behalf, and when to let them struggle. I’ve made mistakes. I’ll make more mistakes. I can only hope my kids know how much I love them. Even if I’m the mom that says !$#% a lot.

“Mama, why am I so different?”

I bit back tears, hugged her, and looked her in the eye, “Because you’re wonderful.”

I took a deep breath for the next part, “You know how Owen and Papa think differently than others?”

She nodded and looked down at her lap. I made a mental note to myself as I noticed she was picking at her hands again and the skin on her lips. I would need to tell the doctor. I took her chin gently and kissed her cheek.

“You think differently too and that’s a good thing.”

——————-

It’s been a year since that moment. We’ve since found a Psychologist and clinic that specialize in helping girls on the spectrum and supporting them with processing trauma. Our neighborhood school refused to acknowledge any of the medical diagnoses or recommendations so now we’re on a new adventure of finding what works for our kids. The road is bumpy but the journey is never boring.