Harmony at Halloween: All color of buckets are welcome at our door!

adhd, ASD, atypical, autism, equal rights, equality, inclusion, neurodiversity, parenting, politics, special needs, special needs parenting

Harmony at Halloween: All color of buckets are welcome at our door!

Ever have one of those social media moments where you cringe and want to crawl into an ethernet hole? No? Then you’re not me.

I, with all good intentions and little forethought, shared an article on a social media site and asked for people’s opinions about kids using a blue bucket for trick-or-treating to signify that they are on the spectrum. Why did I do this? I was looking for other’s opinions and genuinely wanted an open discussion about the topic. What I didn’t anticipate, and should have, was a social media clash of politics and high emotions. Some of it was directed at me for even sharing the article but I honestly enjoyed the conversations and it opened my eyes to some perceptions that I hadn’t considered.

For those undoctrinated, there are different colored Halloween jack-o-lantern buckets to indicate if a kid has food allergies, teal buckets for instance, and a growing number of families use blue buckets for kids on the spectrum.

A few angry parents remarked that we might as well use different colored buckets for everything. They probably meant that flippantly but I don’t think that’s a bad idea. If we’re hoping for an inclusive, accepting world then a rainbow of colors in our candy buckets sounds like a fun idea to me. I’m all for people over sharing rather than being silenced for fear of ridicule or shamed into masking their true identity. The only masks we should wear are fun ones. (It’s Halloween after all, not a Republican rally.)

There were a few parents concerned about their kids being stigmatized by using a blue bucket as an invasion of their privacy. I can see that point of view as well; however, the more open I am about my family being neurodivergent the easier time we have in interactions and the more accepted my kids feel. I tell them every day how much love I them and how proud I am of them. To me, they really are super heros. Costumes or not.

Being open about neurodivergence gives others a chance to feel comfortable asking questions and it prepares them for some of my kids’ behavior and it shows that we’re willing to discuss autism with them. We’ve had many moments where we’ve been approached and asked questions and it allows for the conversation that a lot of us hope for as parents. It’s not comfortable all the time but I’d rather the discomfort than make my kids feel like I’m hiding their identity from the world. Autism isn’t soley their identity but it’s a big part of who they are because it affects them physiologically. 

The logical question, on the flip side of this, is do my kids mind me being open about their neurodiversity. It’s a valid question. When it comes to my writing, the rule is that I ask the kids before I post. I review what I’m going to share with them and allow them veto power on what gets posted or published. That includes anything I quote and any photos I share. It’s a hard rule to follow, I won’t lie. There are pics that I gush over and feel a pang of disappointment when they ask me not to share, but I also understand. It’s their image, their identity, and I have to respect their wishes when it comes to sharing.

Much like the developmental stages we’re nearing, my writing has evolved based on the comfort level of what my kids allow me to share. I know the day is coming that they want me to keep everything private and I’ll honor that. Besides, I want to hear what they want to share.

My vote on the color of your bucket, wear and share what you want and celebrate however you feel comfortable. I just know I’ll have four buckets for you when you come to the door: teal for allergies, silver for chocolate, blue for toys, and orange for what I won’t share with you at all and binge eat once the kids are asleep. Happy holiday!

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

Shadows and the sweet

autism, chronic pain, death, Ehlers Danlos, motherhood, parenting, special needs, special needs parenting, Uncategorized

I was numb. The fear of what was possible and unknown was twisting inside of me and clamping down on me.

It was humid, raining, and I felt like jumping out of my skin and flying over all of the cars ahead of me and fast enough to leave everything I had heard behind me. Traffic crawled along but I simply just stared at the tail lights ahead of me with resignation and accelerated with the mass of vehicles and decelerated without much notice. I had just gotten off the phone with my husband and the doctor appointment was behind me but so much lay ahead of me.

For the last few years I suspected that I had Ehlers Danlos (I’ll wait while you Google that) but getting a diagnosis is a struggle not all that unlike the process we went through for our children being diagnosed with autism. I didn’t worry as much as wonder since I had so many other concerns that absorbed my attention (see “children”). Yet as the stress of life built up over these past two years and then sped up to a frenzy in the last few months something shifted. I was in pain. Not just with certain activities or phases. It was there when I tried to sleep. It was waiting for me when I woke.

Nothing was comfortable anymore. Sitting, laying down, nothing gave me relief from aching. I didn’t want to take pills to stave it off and be living in a fog. A dangerous proposition if you’re meant to be running after children but I found I couldn’t keep up. Not just from exhaustion but physically my body wasn’t responding when I needed it to.

I stared at the Hyundai in front of me. The man was gesturing like an enraged mime at the chaos around him. As if silent reasoning was possible with this quagmire of metal boxes. The car across from him held up their middle finger. It was an elderly lady with a multitude of bumper stickers. It shook me out of my haze for a moment and I laughed. It was that last defense that fell away across the surface of my bubble and it burst. My laughter turned to tears and I wept in the privacy of my car as I helplessly sat in traffic.

Because this was my life now. Helpless to the current of traffic as much as I was to the outcome of further testing. It had been written in my DNA and nothing I’d done or could do would change the facts. I simply had to face the pragmatic logistics of booking the appointments for further testing and wait. Waiting was more of a feeling than an action in my opinion and I found it most infuriating when it was to be done in unpleasant conditions (see “adolescence”).

I didn’t want to share my news with the kids until I knew everything with certainty yet they both had a knack for eavesdropping and were keenly sneaky when there was something behind withheld from them. As careful as I thought I was being, making phone calls when they weren’t around me. They noticed that I was in pain, they were confused as to why our walks together had become more rare, and they wanted to know why they couldn’t bounce on my lap.

It was a few days later, early in the evening but I struggled to keep my eyes open so I waited until I had the kids to bed and then went to bed myself. Not long after I heard the soft step of Leonora coming down the hall. She looked fearful and concerned. I pulled the covers back for her and held her. Her face was upturned to the ceiling as she laid her head on my chest but I could tell she was crying.

“I can’t stop thinking about death.”

She sighed and exhaled so deeply I could tell that it was a huge relief for her to speak the words. I squeezed her tight and stroked her hair. These are the moments that parents dread. It’s like seeing your child falling in slow motion yet this is our emotional well-being that is in free fall and you must catch them or risk permanent injury.

“There’s nothing to fear. Death is part of life and we can’t change that… It’s a surprise awaiting all of us, the last great adventure, and to fear it is natural but it’s pointless to worry. Every time we cut a flower we’re watching birth, life, and death all in one vase. Life is beautiful but everything ends, the good and the bad.”

She breathed slowly and calmed. I could feel her becoming heavier as she relaxed and thought about my words. I wondered how she was interpreting them. It occurred to me that she loves my stories and that maybe I could explain it with one.

“Did I ever tell you about Brandon?” She shook her head and I continued, “He was a classmate of mine. We were on school break and during the holiday he had an accident and died suddenly.”

I let my words sink in for a moment before resuming. I left out that it was from riding his bike into the street. Or that his mother and brother had to witness the event. All of those details were too painful to recount and would only heighten her anxiety.

All of us in his class and in the school were in shock when we heard the news and then had to go back to school the next day and behave normally. It was surreally horrific. The bus ride to school that day was silent. We filed into class and sat at our seats robotically, waiting for someone to tell us how to behave, waiting for an adult to make all of this feel ok again.

Mr. West, Richard West (“Dick” for short and he had no shame in informing people) was my fifth grade teacher and the first truly kind man I had ever met. He showed me that men could be trusted and were redeemable. I was his favorite student. Me?! The forgotten, bullied, silent girl who the teachers pushed aside or ridiculed right along with the bullies in my clothes that were 20 years out of date and my hairdo that belonged in the journals of emotional torture all the world over. Mr. West was one of the shining lights in my childhood.

“I had a teacher, Mr. West, he was the kindest man I’ve ever met. He got up in front of the class that next day, with tears in his eyes, and told us this: “Brandon will be missed. He was a good boy and all of us are in shock at what happened and grieving. Death is part of life. Brandon will always be with us as long as you remember him. That’s where we go when we pass on. We always live on in people’s memories of us. To be truly loved is to be remembered.”

And I agree with him, when we die we don’t disappear we simply continue on in the memories of those we’ve loved and those who have loved us. Like Mary Poppins said, “Nothing’s gone forever, Only out of place.” And I believe that too. I’ll always love you, I’ll always be with you, and I’ll always be in your memories.”

Then I told her the lie that all parents tell their children. It might be a different translation but the sentiment is the same, “But that’s nothing for you to worry about because I intend to be around for a long time.”

She hugged me and we laid there for awhile simply thinking our own thoughts. Hers unspoken and mine ruminating over the uncertainties of life and the retrospective judgment of our actions, particularly parents. Whether it’s us raking ourselves over the coals or the hurt expression we fear seeing on our child’s face and knowing we inspired its appearance.

Eventually I offered to help her back to her bed and laid down next to her, singing and stroking her hair, until she fell asleep. As I left the room, I looked over at Owen’s sleeping form and saw his feet ajar from the blanket and his head dramatically craned towards his stuffed owl. I smiled, tucked him back in, and choked on a laugh as he harrumphed in his sleep and folded his bottom into the air.

I can only hope that things turn out right and that if they don’t, my children find me where the lost things go.

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.