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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.

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A label saved us.

ASD, autism, equality, motherhood, neurodiversity, parenting, special needs, Uncategorized

After a lifetime of fighting labels I’ve come full circle and now accept them daily without any hesitation because doing so means giving my kids access to services they wouldn’t have otherwise. I’ve fought hard for the few resources we receive despite the stereotype that kids with special needs get “lots of freebies”. (No, actually they don’t, Janice. Screw you and your spin class too.)

It also means being labeled myself in the process. “Mother of a child with special needs”, doesn’t really roll of the tongue but is far less hurtful than hearing others whisper as you pass, “She’s that mom with that kid in special ed.”

A friend of mine who is a mom to a kid with special needs (see how wordy that is?), said to me, “I feel like not having a diagnosis is one of the worst feelings.”

Yes, I knew immediately what she meant. That awareness that there are issues but not being able to name them. Knowing that your child needs help but not being able to ask for it because you’re not even sure what support they need to be able to get along with other kids because you’re not even sure what your kid is experiencing. You’re shut out when they’re nonverbal and left out in the cold once they can speak and have emotional meltdowns where they can’t explain to you what their world is like. It’s that feeling of struggling to speak to someone in another language. You’re trying to communicate what you need and relieved when they finally understand. Even if they can’t, or won’t, help you. That’s what it’s like being a parent of a kid with special needs. Alone and marginalized.

These past seven years have been many moments of feeling like a tourist struggling to understand a map in a foreign language. Of knowing the reality of what I saw my children experiencing yet not being believed. Minimized, dismissed, marginalized, ridiculed for speaking out. Told by professionals that I need counseling while my child ripped the doctor’s office apart and crumpled into tears, stimming, inconsolable only until they calmed themselves by rubbing their fingers together rhythmically. The doctor left the room and a nurse returned asking us to reschedule. They wouldn’t look at us or speak to us on the way out. The waiting room full of people stared and Owen grasped on to me to avoid their eyes. Nora calls it “the mean faces moment”. It’s the same moment we experience at school performances, restaurants, buses,…we’ve gotten used to consoling them and rushing them out to head off the impending meltdown all while shielding them from the prying eye contact of strangers. It’s as if our kid is allergic to direct stares and we’re rushing him out of the glare from others.

This month, after five years of being told I was imagining things, and even being told so after my son and husband were diagnosed, came the moment where someone listened. A doctor finally diagnosed our daughter. This doctor, she gave me the gift of clarity, my daughter the chance to be understood, our family the resources we need to move forward in supporting her, and me a light amidst the darkness – literally.

The day I met our daughter’s new doctor I was a jumble of nerves. I was prepared with my stack of folders, with all of my notes and lists to fully explain my daughter to her and defend my observations. I did all of this because I’ve learned the hard way. Every teacher, therapist, pediatrician, counselor, doctor of any type, and so-called experts have tried to talk me out of believing in what I knew to be true. My daughter was struggling. That morning I drove sweaty palmed and jittering in my seat high on too much caffeine to make up for a sleepless night of rehearsing questions in my head like I was preparing for a job interview.

The drive was plugged into my GPS even though I was pretty certain as to where the office was. Even with traffic, I arrived fifteen minutes early and patted myself on the back while I searched for a restroom. As luck would have it again, there was one just outside the entrance to the doctor’s office within the building and I dashed in. As the exterior door closed, I happened to catch out of the corner of my eye that they had a motion light much like the one we have at home in our basement. I passed through another door into where the stalls were located and went about my business. As my cheeks hit the paper liner a not-so-funny thing happened. The lights went out. Someone must have just left right before I came in and the light didn’t trigger for me but instead, went out.

My first thought was that someone was playing a joke but then I really panicked and my PTSD kicked in.

What if someone was attacking me?

What if the electricity was out in this windowless building? What if I can’t get out?

How long am I going to be sitting here waiting for someone to come in to use this bathroom out of this huge office park?

My hands began to shake and I quickly tried to find my phone in my purse. My phone fell out of my hands and went rolling across the floor. I began to cry. I was trapped in a bathroom coffin just waiting for someone to open the door to trigger the light or rescue me. At least my pants were up.

Then I noticed the stack of folders I had brought. One of them was a notebook I had bought when Nora was back-to-school shopping. It had a glow-in-the-dark cover and it was peaking its corner out from the bottom of the pile. I scrambled for it and managed to find my phone not far from the stack of paper and turned the flashlight feature on. The door was five feet away but it might as well have been fifty feet. I tried to pull myself together and managed to get into the doctor’s waiting room with acceptable decorum. A well meaning doctor walked in and made eye contact and I fell apart. She offered me water and patted my arm.

We went into her office and I did as I usually do when I’m embarrassed, I cracked jokes. We both were laughing within seconds of me being seated and she made one herself, “Well, I better be able to give you a correct diagnosis. It’s the least I can do after trapping you in my bathroom.” She took my stack of notes and we discussed Nora’s history. I cried some more. She listened. We agreed to meet again and that I would bring Nora with me next time. She promised me that we would sort out everything and help my daughter. I sat in my car afterwards and cried until I could see clearly enough to drive.

I returned with Nora two days later. The doctor greeted us and shocked me when I thought I could no longer be shocked. She didn’t need to do further testing. Most of it had been done previously based on the notes we requested and I hadn’t been informed of those tests or the results. The school knew all along. They had labeled her with autism themselves but didn’t want to acknowledge it because they would have to help her if they did.

The doctor reviewed Nora’s artwork, books she had constructed, and listened to her stories. She looked at me levelly and announced, “Your daughter is amazing.” I swallowed back tears and welcomed the hug as Nora sensed my emotion before I felt it and came to embrace me, “It’s ok, mama.” I set the stack of paperwork aside with the doctor’s summary and pulled her onto my lap.

“You’re right, baby. Everything is going to be ok now.”

Acceptance is a far off destination.

adhd, ASD, autism, equality, motherhood, neurodiversity, parenting, special needs, Uncategorized

Cathexis. Definition, the concentration of mental energy on one particular person, idea, or object (especially to an unhealthy degree).

I’d never heard of this word until yesterday. It’s an accurate label for this phase of my life and for the many parents, like myself, that have kids with special needs.

It takes a dedication and level of commitment that no one can prepare you for. Much like the all encompassing weight of stress and worry over their well-being and future if you’re not there to care for them some day. The fear that they’ll never be independent. That your life will end too soon and fall short of the length that they need you. Is there a greater fear than your child dying? For me, yes, the fear that I’ll leave them alone in the world unprepared, or incapable, to care for themselves.

Parenting kids with special needs becomes a vocation that seems only achievable if you throw yourself fully into researching on their behalf and supporting your kid as much as possible. I’m reminded by well meaning, unintentionally insensitive folks, that I really need to focus on “self care” and “get out more”. As if care workers are sprouting on the vine and all of them are willing to watch my kids overnight. Strange, but most sitters don’t want to stay over to watch two kids on the spectrum. One of which has ADHD and likes to wake up throughout the night to sing and scream demands while he rattles his baby gate. Quite often dragging his baby bottle against the bars like an inmate with a tin cup begging for water. Funny that.

Here’s another truth, it’s lonely. Even if you find other parents to kids with special needs that commonality makes it difficult to congregate. It’s difficult enough with small kids to have a conversation but with our kids we might not even make it to the door or we’re occupied with keeping them from running off, melting down, or some combination so maintaining a conversation beyond exchanging names is an accomplishment.

Autism Awareness month, for most of us, is bullshit.

What we need is acceptance. What is required to make that possible is equality.

Acceptance for our kids within families; because, yes, extended families are known for shunning you once your child is diagnosed. I’ve experienced this first hand and have had many arguments to explain that certain stereotypes are untrue and, no, us accommodating your preference of food is not the same as us asking you to make an “accommodation” of putting up baby gates before we visit so our son isn’t injured or elope out the door.

Acceptance in our communities. I can’t count how many times we’ve had to bodily remove our kids from an event or a public space because of others being rude or insensitive and triggering a meltdown that we then couldn’t avoid because of their presence. Insult to injury, those same people want to argue about our parenting while we’re trying to calm our child or, worse, continue to stare and trigger our child as if they’re baiting them into acting out. The mumbled agressions as we leave as the cowards then feel brave enough to comment to our retreating backs.

“If I had a kid like that I wouldn’t take them out of the house.”

“Why don’t you tell that kid to shut up?”

“Some people really need to learn how to parent.”

“That kid just doesn’t belong her.”

“If that was my kid I would spank him.”

We’re limited as to where we can take our children. We know that most places won’t accommodate us and not to expect it even if they have in the past. Many times we’ve had to leave places with our kids in tears because we couldn’t stay. The line was too long and no one would help us, the sound was too high and they wouldn’t turn it down, the restaurant was too busy and we couldn’t get a table in a quiet spot,… We’ve become accustomed to being discriminated against. Our kids have internalized their otherness and anything we say to bolster them up against it is futile to heal the wound of being rejected. We try our best and keep asking for accommodations but every day feels more and more like a gerbil wheel of failure. I’m chasing cheese that I can see and smell but never reach.

Accommodations are a form of acceptance in action. Awareness simply means you know about a condition or topic. Awareness means that you know when discrimination is occurring but acceptance is doing something about it and creating equity for others.

Equality is allowing my child to attend his neighborhood school so he can make friends in his community and be accepted as a member of that community, yet we’ve been turned away not once but twice. I have two separate drop offs and pick ups for my kids every day.

Equality is a place at the table, equity is having a functional chair.

For instance, my daughter’s school has ADA accessible entrances but half of the door buttons are malfunctioned so if you’re wheelchair bound you have to wait for someone to open the door. The school by law is up to code for ADA standards yet they chose to house the children with special needs on the second floor so they have to use an elevator to access their classroom when there’s ample space on the first floor for their class. Yet that would be mean them being visible to other students and part of the daily community. A community that they entered into after most likely a long battle on their parents part because I’ve yet to win that battle for my son who is not allowed to attend the same school as his sister.

Even if I was to get my son into the neighborhood school, they like many others, make it very clear that they do not accept children with special needs. They are aware, they will accommodate them begrudgingly by law, but they do not accept them as equal to all other students. It’s not as if a sign is posted telling them to “go home” but it’s unmistakable when every area of a school is geared towards able students and kids with special needs are excluded.

So often children with special needs are shoved off into inadequate classrooms and corners. Given “sensory corners” to sit in and calm down when they are overwhelmed. The clear message being that it’s their problem, their fault, for being over stimulated not that the class needs to be reminded to keep their volume down or that the space needs to be reconfigured. The child with sensory issues is told to put on headphones and sit in a corner. It sets them apart and reminds them that they are different and unaccepted.

School assemblies and celebrations, a flood of students all talking at once in a high ceiling gym without a single student with special needs or disability in sight. Every week or month appointed for awareness around Developmental Disabilities, Autism, or a physical condition goes unrecognized as children make decorations for other events for more important to the rest of the school to acknowledge like Presidents Day or a “Fun Run”.

The cathexis of my existence is my children. That might seem unhealthy or unwarranted to some. To that I say, do you feel accepted? Do your children fear being excluded at every moment of their life? Do they feel unwanted in their own classroom? Can you leave the house and experience moments as a family, together, without fear of being discriminated against and turned away?

I’ll continue on with my cathexis until all the chairs at the table are functional and every person has a place.