Autism FreeZone "The Mom Blog"

Finding Calmness in this Storm...

Which daughter will show up?  I have two daughters, but that isn't what I mean.  Our five year old daughter that was diagnosed with autism years ago is very inconsistent.  She is a rock star on some days.  She is engaged, organized, related and present.  On other days, she is really off.  She frustrates easily, is rigid, self-absorbed, lethargic and generally disorganized.  My mood fluctuates tremendously depending upon her day.

When I was in my late 20's and early 30's I attended yoga class almost daily.  I was addicted to the calm within myself that yoga helped me access.  Even before autism, I struggled with issues of anxiety and depression.  Yoga was my Prozac.  I tried Prozac; by the way, it just didn't do anything for me.  My consistent yoga practice cured me (yes, literally) of all anxiety and depression.  That isn't to say I didn't eat a proverbial ice cream sundae when something at work went wrong, but over all, I didn't struggle with anxiety and depression so long as I did yoga DAILY.

The dailyness (is that a word?) of my yoga practice was the key.  The instructor used to say annoying but oh so challenging things like urging us not to swat a fly perched on my arm or asked us not to think about getting a pedicure while engaged in a pose.  Some days I was able to stay present in the pose and lose the thoughts.  Other days I was obsessed with the chipped polish on my big toe. 

I realize that my every day now is reactionary.  I have no equanimity.  I'm swatting flies every second of every hour.  It's all a big chipped toenail these days.  How can I find my calm when there is no time for daily yoga?

I know yoga is my answer, and I can't get there.  Maybe I could get there once or twice a week if I negotiate really hard with my husband and sacrifice some precious sleep.  But, the idea of getting there daily seems impossible at the moment.  Once or twice a week isn't going to help me with calm.

Hmmmmm....namaste. 

A Debate Means there are Two Sides

I was blessed by parents that could afford to send me abroad during my junior year of college.  They thought having an experience where I fended for myself, explored a new culture and language, all the while continuing my education was an amazing opportunity.  It was on so many levels.

I went to Israel to wrestle with what being Jewish meant to me.  I never felt God or spirituality in the kind of Judaism that was offered up in my childhood. My twenty year old soul was longing for some nourishment from the only tradition I knew.  I craved answers.

A famous professor at Hebrew University in Jerusalem recounted a story one day in class.  He was an older scholar, not particularly religious, of European descent, and himself a survivor of Auschwitz. His family was captured by Hitler's army in the early 1940's.  He was ten years old.  I will spare you the gore and horror that he told us about life in a concentration camp. 

The part of the story that sticks with me today is about a local television station.  They had contacted him to "debate whether the Holocaust existed".  He paused and asked the producer to repeat herself because he was so stunned.  She repeated herself.  He said, "Madame Producer, if I were to debate whether the Holocaust existed, that implies two sides to the debate".  Then, he hung up the phone and spent countless days and nights imagining a world where people did not believe that the Holocaust existed.  At the time, there were many survivors alive that could personally recount how millions were slaughtered in unimaginable ways.

I always remember before I approach certain conventional doctors and others that debating whether vaccines cause autism implies that there are two sides to the story.  I don't engage.  I know my truth, which may or may not be yours.

Vaccines did cause autism for my daughter.  The flu shot in particular.  They caused autism for hundreds of your children. If our children could talk as eloquently as my professor in Israel, they might also hang up the proverbial telephone.

I’m fourty-two now.  I still struggle with nourishing my soul spiritually.  I will take wisdom derived from any tradition these days if it feels healing. Although I am very grateful that I had the chance to figure out what being Jewish meant to me at twenty years old, it is surely fluid.  What I wrestled with then pales in comparison with now.

 

We Know How to Spend Money

We spend money like we have it.  We spend money like there is a tree in our yard that grows it.  We spend money because we are desperate to heal our child, give her every advantage and not look back with any regret.  My mantra: money can not stand in the way of our daughter's recovery.  I simply reject the idea of not doing something that may help her to speak, think and function because we can't afford it.

Do you believe my thinking is magical or unrealistic?  Should there be children that recover from autism because someone could afford it while others can't?  I can't sleep, literally, when I think about that. 

We currently spend the most money on medical treatments for our daughter.  She is being treated by doctors all over the country that we visit and speak to on the telephone.  She is getting healthier. She has been on a course of IVIG for the last eight months here in LA.  She recently had a colonoscopy and endoscope to check out her gut in the Boston area.  We consult bi-monthly with her DAN doctor by telephone.  She is on many prescription medicines and a variety of supplements. Her eye doctor is in NY.  We consult with a child psychiatrist and team in Bethesda to help tweak her social-emotional development.

We know how to spend money.

Did I mention that she also has occupational therapy, speech therapy, pilates and piano each week?  The OT and speech are several times a week.  She does pilates with a pediatric physical therapist.  Some of the OT is funded through our school district.  Some of the speech is supposed to be reimbursed by the school district.  That reminds me that I have to pay the retainer for the lawyer that got us all our school based services.  Then, there is the private preschool to pay for too.

We know how to spend money.

Please, God, let this next treatment recover our daughter.  We are in a HUGE financial hole, God.  We are just regular people, God.  The finances cause so much stress, separate from the autism.  Or is it separate?

Welcome

Thank you for reading my blog.  I know how busy you are.

My day to day life involves two small children, both girls that are five and two.  Our five year old was diagnosed with autism a few months after her second birthday.  We've been holding our breath sorta, kinda about our two year old, but we can safely say she is neurotypical.  Phew. Phew. Phew.

I was super-lucky when we heard the news about our older daughter's diagnosis.  I googled and found hope.  The day after the diagnosis she was gluten, casein and soy free.  I read it could help, and by God I do everything in my power to help. I'm a very no-nonsense sort of person.  I act and then experience the emotions later.  I don't have a lot of tolerance for hemming and hawing about stuff.  In my journey, when I flounder, it isn't a good idea for me or my family.

The diet was first.  Getting us on waiting lists for services and clinicians was next.  The DAN movement was about a month later when we talked our way into an appointment with a now famous DAN doctor (the nurse simply couldn't keep telling me day after day that the doctor didn't have 15 minutes for us).  I knew deep down that my daughter was ill.  She looked and acted it.  I thought if I improved her health, she would be cured.  Yes, I said cured.

I was wrong.  I love Jenny McCarthy's image of a kid getting hit by a bus best.  After getting hit by a bus, no one will ever be cured but he/she could recover from the injuries.  My daughter has made tremendous gains over the past few years.  She is not recovered, by any means.  She speaks and plays.  She's very gifted cognitively.  She is anxious and inapporpriate socially.  Her biggest challenges  are socially, visual-spatially, vestibular/motor planning and her expressive speech.

This is where we are after spending every minute helping her recover for almost three years now.  Did I mention every dime we have (and don't have) too?

My husband is a creative genius.  One of the many reasons that I married him.  He came up with this brilliant idea of free stuff for families impacted by autism in the shower one morning.  Can I be cynical?  He often comes up with great ideas and then someone else becomes rich because he never organizes himself behind the idea.  He got organized.  Got amazing people in Hollywood to work for free for autismfreezone.  Got people excited about this idea, including the guy who helped start Craig's List---I thought that was pretty cool when I heard he had several meetings with him.  I'm proud of him.

It makes total sense to me.  People joining together as a community to act jointly to get things for less or for free.  Ummmmm...isn't that what Costco is all about...they've done pretty well for themselves.  Let us do the same.