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...