Breaking My Silence...

I've been listening to and reading a lot of Brene Brown the last couple years.  If you don't know her, she is a doctorate level social worker who has studied shame and vulnerability and it's effect on the human condition.  Shame, she says, requires silence in order to survive but the recipe for healing it is vulnerability and empathy.  Being a one on the enneagram (i.e. a perfectionist or the reformer depending on your edition), I could spend all day learning about shame.  I eat shame for breakfast in the form of an inner critic.  This voice, all be it my own inside my head, is not a nice girl.  She finds imperfections and criticisms to just about everything in my life.  "There's crumbs on the counter, you forgot to sign the permission slip, those bills look all messy put them in a pile, you look wrinklier, your hair is thinning, when is the last time you vacuumed the house?!?!"  You get the point.  Shame and the inner critic is a "B*TCH" and I often tell her that.  But she doesn't really go away regardless of how healthy or unhealthy I am.  Even if my house is clean, my kids are fed, and I am fitting into my goal pants, there's another thing that could be perfected.

So imagine me, 25, in grad school, planning out my perfect life with my then fiance.  I would have 2-3 amazing children, an adorable dog, a job that I totally loved, a nice house in Hamilton Co, with good friends, an active lifestyle and cute cute cute everything.  I was working hard.  Just a shade under a 4.0 GPA, scholarships, graduating early, and a job lined up after graduation.  My little inner critic, well, she could suck it, because despite all the negative, I had used my tough mental attitude to just get to be a better version of myself.  I was ready.  I was hopeful.

Fast forward a decade.  I have everything on that list.  Literally EVERYTHING.  I have been so blessed to see benchmark after benchmark in my life and I'd run past every one of them with hard work and persistence.  And then came the feedback that my precious kindergartner was struggling a bit.  So I did all the things that a "one" does.  We worked harder, read more, talked about behavior choices and empathy.  We set goals, we used strategies... but it got worse.  Test scores and reading levels plateaued.  Everything started to feel like we were walking in mud.  I called OT.  I called neurofeedback.  We talked to the teacher, the school counselor, the school psychologist.  Called more providers.  Waited.  Waited.  It continued...

Nothing, I mean, nothing I could do was really helping.  And for the first time in a very long time I felt powerless.  Everyone around me including the doctors said, "you are doing so much, it's all wonderful", but what wasn't wonderful was the results.  What wasn't wonderful was after a first round of testing, the psychologist said, "this is worse than I thought", we need to test more...

The perfect life I had been striving for, it didn't include Autism.  Even typing it now, I want to press backspace six times and be able to just type ADHD or anxiety (which were also diagnosed).  And since then I have been a wavering storm of trying to fix it and trying to accept it.  I cannot tell you how much paperwork I have done, doctor's and therapy appointments I have been to since we started to see sensory issues in 2016.  I don't want to think about the money spent, the time utilized, and the amount of books I have bought.  I have set up a sensory gym in my home, I have bought so many supplements and probiotics that I could start a health food store, and I have tried so many approaches and strategies to just get clothes on for school in the morning.  The issue is not my child, it's how her brain developed, her genetic make up, and how it's all wired inside.  And truthfully, I am learning, that there are often days and moments and opportunities where even if I do everything perfect, it all explodes...

By nature, I became a fixer.  I think I learned as a child that if I followed the rules, the directions or the orders, I would be safe.  It has served me pretty well.  So many of the dreams and goals I set for myself I can accomplish.  But the anger I get when I cannot do it right or the directions other's give do not work for our situation, or the supplements I researched and bought have zero effect on her attention span, well, that anger, it is a fire.  I would do ANYTHING for this child to be well, to learn easily, to just be able to coordinate her body to ride a bike or tie her shoes, but literally, all I can do is keep trying things until she feels good and can live the best quality of life she can while still maintaining a positive relationship with her.

Despite a bachelors in Child Development, a masters in marriage and family therapy, I often feel so ill-equipped that I shout out in my prayers for God to give me discernment.  Because all of those books, all of those articles, all of the feedback, well, it's saying we're doing all we can besides going really extreme or crazy.  High functioning doesn't mean less symptoms, it means her intellect is actually quite high but her social and emotional development as well as her coordination and processing is all effected by her brain development.  Reflexes that babies naturally integrate are not, and fight, flight or fear is a common pattern of interaction even just over putting on underwear or new shoes.

Autism has been on the front line of my client's lives.  I have held mother's after their diagnosis, and rolled tractors across the floor with kids who barely spoke.  I never thought it would be my life, my perfect dream.  And I decided to share it because in a way, I know I cannot heal, I cannot grow, I cannot accept it, if I keep hiding it in shame.  If I keep feeling like I can't help my child.  If I keep feeling like maybe there was something I could have done sooner to help her.

I know I will spend my life helping those with Autism.  Not because I fully understand what to do, but because we all need someone to stand with in the storm.  Autism has been by far the biggest battle, the most heart wrenching experience of my story.  My facebook and instagram are my reminders that God is GOOD.  We do have good days, moments, and swim meets.  We have amazing people in our life, in our Life Group, in our circle.  We have amazing providers and a treatment team.  We have an amazing new school who has set up so many good strategies and plans to help her grow.  And we have amazing doctors guiding us when we fall back.  I have faith that God will guide us.  I have comfort in knowing that He is using Autism in my story, even if I sometimes hate it.

So, that was hard...  But I hope that with 1 in 52 kids diagnosed with ASD or HF ASD that my dear friends are  able to read this and know "me too".  Brene challenged me in her research that the first step to healing, is breaking my silence.

My hope of my story is that I know I am the right mom for her.  Maybe not a perfect mom, but yet, a perfect mom for the fight.  We will continue to learn, grow and become a family, but we also recognize the pain and the brokenness of our story.  We surrender to the hard mornings and night time tantrums, frankly because surrender is our only option sometimes.  But we will continue to seek the love and support from our community because the more support she has, we have, the more I know she will thrive.  

And for me, just being reminded I do not have to do it all perfect, to be grateful for our blessings,  and to use my anger as fuel to keep persistence to seek wellness is all I can do.   I hope you, too, can find the strength to be vulnerable with whatever your mountain is...

The Unforeseen Mountains

I cannot believe that I have not written a blog in over a year.  Maybe, in a way, the past year until recently felt like a smooth sail.  No major dramas, no major emotional crisis. It could also be that the past year was very busy with the big one going to kindergarten and doing a year long swim club.  It could be that I had good girl friends for a bit that I was intentional with.  I was journaling more, praying more, and having intentional conversations.  All felt well in the world until about Christmas. 

I was getting out of the shower tonight when I thought about a few mountains I have been facing.  The imagery in my mind brought  me back to these writings of marriage, working in poverty, losing a friend to suicide, infertility, health issues, parenting, and dieting.  The blog I started to convey my excitement and desire to enjoy the moments transformed into a blog about enduring suffering and doing hard things.  The blog about expressing joy and transformation in grad school became my sage that life threw me as each chapter unfolded. 

And I had the pleasure this past year of hearing snip-its of stories from a Bible study group focused on sharing our stories and the core events who helped us to discover who God is but also what God created us for.  And I realized that the mountains that we climb are so much based on our own perception.  Many people come to my office and say, "I don't know why I am even here complaining, I bet you see a lot worse than this", and yet, I am also almost always finding a level of compassion even if the client before was climbing a mountain range in Nepal while the current one is merely climbing a rolling hill.  Because the truth is that our mountain, our problems, our life events, and our troubles and joys are all important to varying degrees in shaping us.  They create our life story. 

As I dried off my hair and just stood in the silence, I realized, I am on a mountain that I had no idea I would ever climb.  Maybe more like a series of mountains that keep rolling out each time I make it to the top of one and then seen the next. 

I think when we are on unforeseen paths, those that we never pictured ourselves in, we often hit a place of emotional desperation.  A place where we are plugging one foot in front of the other.  A place where we want to turn back but know we are too far out to do that.  A place where we desperately look for a guide, a map, some sense of direction of where to go next. "Surely, God will light a path."  We find comfort if we are lucky enough to have a trusted friend who walked the road before us (even better if they climbed higher mountains and tell you that you'll survive).  But often in the journey, a those stopping points where you breath and look back on how far you come, I think that I often think, "how did I even get here, this was not in my plan".

About four months ago, we bought our dream home.  Well, the interior was our dream home.  Fresh paint, new appliances, new counter-tops and carpet.  I could see my furniture in it.  I prayed over it.  Put our house on the market and made a contingent offer within a few hours of listing it.  I pined over this house.  I saw a beautiful story and a beautiful solution to an unforeseen redistricting of schools and I thought, "I have really made such a good choice".  Mind you, the weather was freezing, and it was not just freezing but the entire outside of our house for walk throughs and inspections were covered in inches of snow. 

I never thought I would be climbing a mountain and finally finishing the journey of almost 8 weeks of skin infections.  I never knew we had so much poison ivy/oak, and I definitely had no idea I would climb the mountain of "Sporotrichosis"  (a fungal infection transmitted through rose bushes and small cuts in the skin).  I looked at this beautiful house and I thought about my wonderful days mulching and planting flowers.  I saw the potential, the vision but I never planned the pain, the three prescriptions, and the countless dollars of over the counter creams, anti-itch, pain reliever, and astringents.  About a week ago, I finally got to sleep through the night for the first time in almost two months.  It was like a rebirth.  A suffering that was ending.  It was a minor set back in the big scheme and now if I can find someone to remove the poison ivy that is taking over my yard, I will be able to laugh at this mountain that was thrown my way, but not all mountains are temporary.  Not all mountains have a clear cut ending...

A midst the move and the busy-ness of the year, I started to wonder about the big one's performance at school.  Papers coming home 90% undone.  Random behavior logs needing to be signed.  Increased sensory needs and then lots of emotion.  School became harder, really hard, and then I think I saw her put her own emotional breaks on when the house was all packed up and we waited to move.  We knew we had to react, to make a plan, to respond in some way.  I felt like every turn was unforeseen, not how I had seen things in the past.  I started to read article after article.  I bought a stack of books.  We got back to therapies, started to reach out and consult.  There was a really big mountain in our way and for the first time, I really felt like I had no idea how to help, what to do, how to be the text book parent that she needed me to be.

I have written about sensory processing and still try to understand it, but this felt bigger.  This felt like I couldn't just twirl her in her swing and correct it.  The swim season ended, the sensory needs increased even more.  Sitting in our new wonderful house, we were drowning.  We were climbing a mountain that we did not expect.  We had a plan and had worked that plan.  No one expects a child who's gone to literally preschool since she was 12 months old would struggle with basic skills.  The morning routine was a nightmare, the bedtime time was full of nightmares, too.  The big man and I were scared, we still are scared, and we likely will remain that way.

Suddenly a new world and vocabulary was opened to us and we started having hard conversations with providers.  And I realized that I handle unforeseen mountains in two phases... first, I get very sad and scared and overwhelmed so I cry a lot, shut down, and overthink.  Then I realize that I do something that I am sort of proud of  myself for doing, I bare down.  I move forward.  I have these cleat-like shoes that dig into that mountain I have to face and I just start climbing.  I wake up with hope that God will help me and I will try to make every effort to help myself.  I start to look for others feedback and guidance.  I pray.  I talk about it... maybe to a default.  But I keep trying to climb. 

I never realized in my youth that giving up was totally an option.  Maybe that's a good thing in these moments where life brings you more than you can handle.  I think my fear of failure and my grit to succeed is forcing me to weed my garden, not run from danger, and to keep climbing each day, one foot at a time.

I wish I had some profound hope that this journey we are on gets easier.  I think in that first stage of emotionality and disbelief, I try to bargain with God.  I think we all do this.  "Why me?"  "Why now?"  "Why can't you just give us a break?"  "I don't want this cup..." Oh wait...

In my trying to gain perspective I often end up humbled that the cup I bare is never as heavy as the one He held.  The disappointments I face are hard, but they are never the ones He felt.  This life is full of heavy, dark, gut-wrenching loss and heartache and pain.  From suicides, to death, to poverty, and sexual perversion and assault, from cancer to drug addiction, from the death of a child who was supposed to make it, from sex trafficking, and hunger, famine, and injustice.  And His cup was bigger...  His mountain that He carried that cross was bigger.  His pain in his steps were far more painful.  His darkness around Him was far darker...  His isolation, betrayal from those who "loved him" was far deeper.  But nonetheless, He climbed and He willingly died...

Perhaps the unforeseen mountains are a glimpse of the suffering.  Perhaps it's all just coincidence and science and bad genes and poor landscaping practices.  Perhaps it's just bad Irish luck or bad juju.  Perhaps it's a chance to learn so I can serve others.  Perhaps it doesn't really matter why, but it matters how.  How will I climb?  With fear?  With hope?  With friends or alone?  With openness or isolation?  With joy or pessimism?  How will my story be told when I am gone?  Will I choose this mountain and seek Him, or will I stop climbing, angry and bitter and resentful that it was even made for me to climb?

My hope and my prayer is that I climb with His help, looking for places to stop and rest and to regain my spirit.  My hope is that I seek truth in my thoughts and my heart so I do not allow others to push me down or leave me feeling abandoned.  My hope is that I lean into my marriage, my friendships, and my family and grow closer and deeper in authenticity than to hide away in fear.  I want to show other moms that we can walk together in our struggles, not to feel we are all alone. 

I think that the intense skin stuff the past two months was a metaphor of what is to come.  If I had not asked for help, I wouldn't be healed.  If I had not stopped and rest, I could have gotten worse.  If I had not talked and shared I would not have ruled out that the infection was not poison ivy.  If I had continued to dive in without research and truth, I would have likely been covered head to toe in outdoor diseases and reactions.  But I stopped, went to the doctor, rested, asked for help from friends and I asked a lot of questions along the way.  I did not give up hope but my backyard is still a hot mess.  I am still so weary and tired from the ordeal, but I have hope that one day, some how, this backyard will be the dream I dreamed of.... even if it only lasts for a week until the weeds grow back in...  Oh foreshadowing... I see what you're doing there.  Now I just have to remember, step by step by step....

 Likely I will have more to process and glean from the journey we are on now.  We won't know for awhile still so why are just taking things one day at a time.  We are going to keep being hopeful, but we are also open to try new things and go new directions.  We want help, hope, hugs (eh, unless I am crying then do not hug me), and hopefully, we will see some healing.  I just felt like sharing because I have shared so much with many lately, but it still feels good to honor God in this process and to express my deep appreciation for those we are walking with along the way.  It's been wonderful to not walk alone.  <3