This is Why..

This is a post I have been pondering for quite some time. Truth be told, I’ve written it dozens of times in my head, but hesitated to send the words out into the world. Why? Because as much as I KNOW this post isn’t about any one person, I am pretty certain that there are people in my life who will think this is about them. But it’s not. It’s not about any single person, or any single incident. It is about setting the record straight for anybody and everybody who doesn’t understand why I am sharing our family journey – and that group of people does include some extended family and friends.

So if you are reading this and include yourself among my extended family and friends, please believe me when I say this is not about you. And with that out of the way….

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We are quickly coming up on the first anniversary of We’re All A Little Broken. What started out as a way for me to first process my own thoughts and emotions, quickly became a way for me to provide a peek into our lives in an attempt to help loved ones understand our reality. In the early days of the blog,  my solitary goal was just to help family and friends understand the day to day challenges in our house. But somewhere along the way, the little blog bloomed into a small community of people all over the world who are reading my words and finding some meaning. Somewhere along the way, our story began to resonate….with those who read and can see a similarity to their own family in us, with those who read and see the struggles and triumphs of their own loved one in my son or my daughter, with those who read and are having their own perspective shifted, with those who read and sigh with relief to know that they are not alone on the journey.

Time and again this past year, I have been overwhelmed by the positive response to We’re All A Little Broken. But it hasn’t been all positive. There are people who have questioned my intent, and even some who have wondered out loud if I might be opening my kids up to ridicule by sharing our story. There were enough of these questions, that I actually spent time really wondering if I am being helpful or harmful. And while I do share openly about the challenges we face in our family – autism spectrum disorder, childhood mental illness, learning disorders, fibromyalgia – I do not over share. I do not tell the stories that feel too fragile.  I take great care to balance out the raw and broken bits of our story with the beauty that is found in our day to day reality. And the people who are beside me in this day to day reality – my husband, son and daughter – are all incredibly supportive of me telling our story. So do I think  I am doing harm by sharing our story? Absolutely not.

I know that there will always be people – both in my personal life and in the world in general – who will never understand the intent and message in my words. And that’s okay. I’m not writing for them. I am writing for me. But more than that, I write for the people out there who do understand the intent and message in my words.

I write for my son, who can’t always find the words himself to express his experiences or feelings, but he reads my blog and tells me how proud he is that his story can help other kids.

I write for my daughter, who is already an amazing force for good in this world and I hope that she find some inspiration in my journey as she charts her own path.

I write for my husband, who is my partner, ally and greatest supporter in this life we didn’t expect.

I write for the childhood friend who has confided her own son’s struggles that in many ways mirror my son’s challenges.

I write for the high school friend who has shared her daughter’s challenging journey with me.

I write for the college friend who talked with me about her own hunches and fears on the eve of the first in a series of diagnostic appointments for her young son.

I write for the friend who’s adolescent nephew has been recently hospitalized as he battles with depression.

I write for the woman I have never met, who sent me a message thanking me for words that helped her feel that her family was not alone in their own struggle.

I write for all of the parents and caregivers who are searching for answers.

I write for all of the family and friends who are trying to understand and wanting to be supportive.

I write because the raw and broken parts of our lives are as real and formative and important as the beautiful parts of our lives.

And I will continue writing as long as somebody out there continues reading.

Choosing Grace

Should.

That’s a trigger word for me. I know I use it with myself too much, but I make an extreme effort to not use with it other people. In my opinion, “should” feels critical or judgmental. It diminishes the possibility that there is more than one “right” way to do or be or feel. Should lacks empathy and limits perspective. It is a word that has the ability to make a person feel small and question their choices. It is not a positive word.

Clearly I have an opinion on this. But why?

I am my own worst critic. Truly I am harsh on myself. There have been periods in my life when I constantly and consistently “should-ed” everything I did or said, or didn’t do or say. Those were seasons of self doubt. Hand in hand with the shoulds I put upon myself,  I would also absorb the shoulds that that world put upon me.

Life and time and age bring the gift of perspective, if we are open to receiving. Thankfully, those long seasons of self-doubt are somewhere back in my younger days (along with big hair and questionable fashion choices). That’s not to say that I don’t still occasionally slip a “you should” into my own self-talk, but it does mean that I am infinitely better at not allowing the shoulds of the world color my perspective or choices. It also means that I try really hard to not limit the perspective or choices of others – I’m not perfect, but I am certain that should is not a word that passes my lips toward another person very often.

Bottom line? Should removes the space in which grace – toward myself and others – can thrive. And instead of choosing to live by should, I have chosen to live with grace. Dozens of times each day, my inner voice reminds me “Grace in. Grace out.” When I remember to treat myself with grace and treat others with grace, I counteract the shoulds. Living with grace means allowing for possibility and perspective and choices. Living with grace means allowing for mistakes and second chances.

As a parent, wife, daughter, sibling and friend – instead of choosing should, I choose grace. With my voice and my actions – instead of choosing should, I choose grace. In a world that is becoming increasingly divided – instead of choosing should, I choose grace.

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If Not Here, Then Where?

I’ve lost count of the number of hours I have spent in the waiting rooms of doctors, therapists, and specialists in the past 2 years. I would wager that the total number is well into the hundreds. Hour, upon hour, upon hour has ticked away while I sat waiting for my son.

Some of those waiting rooms are crowded, busy, and unpleasant. Some are spacious, peaceful, and comfortable. All of those waiting rooms have other parents, waiting in chairs for a son or daughter to finish whatever therapy lies on the other side of the waiting room door. Often, those waiting parents also have other children with them – these are the siblings for whom sitting in a waiting room is as common as hanging out at a sibling’s sports practice. Almost always, my daughter is sitting with me in those waiting rooms.

Just this week,  my daughter and I were sitting in the waiting room of my son’s psychologist. It long ago became our habit for my daughter to get as much homework done as possible while we are waiting. On this particular day she was tired, and the homework felt overwhelming, and she was coming up with every excuse possible to avoid having to do the work. She and I went back and forth half a dozen times, before I finally told her I didn’t actually care if the work got done, but if it didn’t she was the one who would have to face her teacher the next day. That was enough to get her to finally buckle down and do the work.

As I settled back into my chair and picked up my phone to check my email, I noticed the one other mother in the waiting room surveying me with a look that seemed to ooze disapproval. What was the source of the disapproval? My daughter and I weren’t arguing – it was a conversation fairly typical of mothers and 4th graders everywhere. So I would think that was not the issue. It could have been the fact that I told my almost 10 year old that she needed to take responsibility for her actions, or it could have been that we were even having that conversation in a waiting room. It could have been I was projecting and she didn’t care at all. I’ll likely never know. After I vented my frustration to my husband via text message, I took a deep breath and focused on my phone. My first rule of survival in these waiting rooms long ago became “keep your head down.”

Several minutes later, I heard the boy who was with the woman ask a quick series of questions…”Why is he still in there? What’s taking so long? Why does he have to keep coming here? Is it because of what happened at school? Is he going to be ok?” To which the woman replied, “Shhh. Not here. There are other people around.”

Not here. There are other people around.

Not here – in the waiting room of an office that is shared space between a psychologist and a psychiatrist.

There are other people around – one other mother and one other sibling, who were also waiting for a child on the other side of the closed door.

If not here, then where? And if not in front of these people, then who?

Maybe I shouldn’t be keeping my head down in those waiting rooms. Maybe I should be looking around and really see the other parents who are very much like me in many ways. And maybe I should be inviting conversation, fostering a safe space, and creating community.

If not here, then where? And if not in front of these people, then who? There is no “maybe.”

There is so much power in naming the struggle – every time I type or say some version of “my son has level one ASD, an anxiety disorder, and a panic disorder”, it becomes a little less frightening. I am actively fighting stigma online and in (most parts!) of my “real” life, but by not saying something (anything!) to another parent in a waiting room, I am perpetuating stigma.

I don’t know if I will even come across that other mother again. But she could really be any other mother (father, grandparent, guardian) in any other waiting room. So this is my vow to her…

I vow to not keep my head down in those waiting rooms anymore. I vow to be open to conversation. I vow to create safe space for other parents who are so very much like me. I vow to foster community. I vow to be a stigma fighter all of the time.

That is my vow, and I challenge every person reading this to make it your vow as well. Join me and be a sigma fighter.

Because I never again want to hear, “Shhh. Not here. There are other people around.”

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To The Parent of My Son’s Friend

While our family support system is fairly vast, my son’s personal support system has shrunk as he struggles with anxiety, panic and depression. So we are exceedingly thankful for the kids who continue to make the effort to be his friend and to the parents who continue to open their homes to him. Yesterday  he got a little “normal” in his life.

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“You’re Okay. You’re Okay. You’re Okay.”

Mother’s Day 2016

I woke up this morning at the LA Zoo with my daughter, the 10 other girls in her Brownie troop, and 3 other mothers. We had a troop sleepover at the zoo on Saturday night. Not a traditional start to a Mother’s Day, but even with a body sore from sleeping on a hard floor (yes I had a camping mat with me, no it didn’t help on a linoleum floor!) and being utterly exhausted it was a lovely way to start my day.

Meanwhile at home, my husband was attempting to coax our son into heading to church. Our son had agreed to acolyte today, and was supposed to be singing in the service with the youth ensemble. Neither of these things were new experiences, nor were they surprises to him, but neither one of these things seemed to be something he was capable of doing this morning. The closer they got to the church, the more anxiety he had. By the time they arrived, my husband had to physically remove our son from the truck. He got him as far as the chapel, before our son melted. Tears, hyperventilating, sweating. He was having a panic attack. My husband decided that the best course of action was to get our son out of there as fast as possible, and in his haste was not able to fully communicate what was happening to people at church.

Later in the day, I got a message from our son’s youth ensemble director that simply read, “Are you ok?” I have a feeling that our son’s sudden disappearance from church before the service even started, had not been explained to him. I filled him in on the events leading up to the disappearance. He knows what our son is struggling through and his response to me included everything I needed to hear…genuine empathy for what our son and family is going through and hopeful looking forward for the day it will be better. He also included a link to a song on YouTube that his wife had sung in church this morning. The song was originally written and performed by My Brightest Diamond for her newborn son, but the message is universal to parenting and especially meaningful to me in this season of motherhood. The line that continues to echo through my head today is simply, “you’re okay, you’re okay, you’re okay.” I am glad I was not in church to hear this performed today, because I undoubtedly would have been a mess. But I am filled with gratitude for the gift of that song.

Take a listen…I Have Never Loved Somebody by My Brightest Diamond

Ripping Off The Bandaid

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These are the lessons I have learned since deciding rip off the bandaid to share both my son’s diagnoses,  and our family’s journey,  with the world.

  1. A “label” isn’t always a bad thing –  We spent a long time not wanting to “label” our son, and therefore were not straightforward with him, ourselves or others. This came from a place of trying to protect him from the big, bad world, but in the end actually made him (and us) more vulnerable. The day we sat him down and for the first time had a conversation that included the words autism spectrum disorder, anxiety disorder, panic attacks, and medication, was actually a good day. We gave our son the words to begin to understand and talk about what he is struggling through. There is both both knowledge and comfort in the labels.
  2. We are not alone – In the first minutes of linking this blog to my Facebook page, I received private messages from 6 different people talking about their own, or their child’s, experiences with anxiety, panic, depression, sensory processing, and autism spectrum disorders. Within minutes I went from feeling like my world was very small, to realizing that my world was big, and wide, and there are loving arms to hold us up when the burden seems too great. There have also been people who my son admires deeply, who have come to me with their own stories of struggle. Being able to share those stories with my son, along with the knowledge that these are adults who both care about him and can understand what he is experiencing has made parts of his world a little less frightening.
  3. Being honest, doesn’t guarantee universal understanding – Most people have been amazing, supportive, and understanding. Most, but not all. I have come across skeptics and naysayers. These are the people who even after hearing the diagnoses, still say “but he seems fine,” or “are you sure?”, or “he’s just going through a phase.” No, no, and NO! I am thankful that the amazing, supportive, and understanding people far outnumber the skeptics and naysayers.

Ripping off that band aid was hard. But we did it. It stung a little, but mostly there has been fresh air. And there is so much healing to be found on the other side.

 

 

 

The Kindness of Strangers

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Friday was my birthday and we took a family trip to Universal Studios. Given the extreme anxiety and panic attacks our son has been experiencing recently, we knew chances were high for him to experience some level of difficulty during the day. We also knew this was something he really wanted to do, so we were willing to take the chance.

The day was full of brief periods of wonderful (the Wizarding World of Harry Potter really is AMAZING!), long periods of horrible, and one amazing moment of beauty that came through the kindness of a stranger.

Midway through the day we were standing in line to see the animal show. At some point, the line moved just enough to stop us in a tunnel (dark and loud) with a crowd of people. Our son was already challenged by having to stand in line near people he did not know, when the line stopped in that tunnel it was to turn his high anxiety levels into a panic attack. He was sweating, hyperventilating, crying, pulling at this clothes and trying to curl up into a ball in the middle of the crowded line. We were trying to give him as much space as we could, and also attempting to talk him through the attack. My husband was looking around to find the quickest way to get him out, and suddenly I heard a voice from behind me ask, “Is he okay? Does he need more space?”

I turned around to find a young adult male and a middle aged woman. The woman had been the one to ask the question, but it was what the young man did next that changed the course of the next few minutes and left a lasting impression on me. He moved just slightly forward, only close enough so that he could bend down and look my son in the eyes. Once he had eye contact he very quietly said, “You’re going to be okay,” and then asked him some questions about Harry Potter and what part he liked the best. My son did not answer the questions, but he did slow down his breathing and that was enough to get him through until the line moved out of the tunnel.

Once the line began moving, I lost track of the young man. I wanted to thank him for the simple kindness and genuineness of his gesture. In a day that had been filled with challenge, that young man was a bright spot. He reminded me that there angels everywhere, and gave me the moment that may have been my best birthday present this year – the pure joy on my son’s face as he watched that animal show.