Why are we afraid?

Those that know me, know that I am determined, feisty and even a bit pushy when it comes to my kids.  Most of that I owe to my mother. (Well, the pushy part is a little my dad).  I am one of three girls and all of us are now mothers.  We are all strong in our own ways.  Especially when it comes to the health of our kids. 

Growing up in the 70’s, we weren’t given medicine for fevers or pain.  When my mom didn’t like the idea of numerous vaccinations, she didn’t take us back to the doctor.  I only remember going to the doctor once while growing up.  We always ate dinner together.  Homemade meals.  Nothing fancy….but a meat, starch and vegetable always.  We played outside.  We did most everything as a family. And most of all, my mother taught us to think for ourselves.  To consider the source when gathering information.  What does the source have to benefit? These are lessons that have served me well in my daughter’s recovery from autism. 

I hear so many parents of children with autism say “I saw the pediatric neurologist and he told me that there is nothing that can be done.  He told me that there are no studies that show the benefit of a GFCF diet so he didn’t recommend it.  Then he made me feel like it was my fault for having a child when I was so young….or too old….or I am just not disciplining correctly.”  To them I say, “bullshit.”  Stand up for yourself.  Stand up for your child.  Are you seriously not going to try a new diet that thousands of parents have found beneficial because your 70 yr old doctor told you to wait for the studies?  Who has time to wait?  Who is going to pay for a study on food?  There are no pharmaceutical companies to benefit so I wouldn’t hold my breath. 

So why are we afraid to question our doctors?  Have we been so conditioned to believe that their knowledge is the only knowledge that is worthy of our time?  I am a firm believer of being respectful of everyone’s opinion but that does not mean I have to follow their advice.  I collect data myself.  I stay up late researching efficacies of different therapies on pubmed.  I see the nutritionist, the chiropractor, the neurologist, the OT and anyone else that has any information to share and then weigh my options.   My daughter’s recovery is at stake.  And for that matter, the health of all three of my kids. 

In my battle to recover my daughter, I have found that the most important tools are an incredibly healthy diet, free of any allergens or food that triggers a reaction, very low sugar intake, getting the GI tract healthy with probiotics and daily magnesium citrate, supplementing with vitamins and minerals, and listening to other moms’ success stories.  Finding out how other kids have recovered. And keeping the faith that it can be done.  Autism is treatable.  Of course it is. 

It is a different world now than it was when I was growing up and only 1 in 10,000 kids was diagnosed with autism.  But we can learn lessons from those days.  Days of less doctor visits, less vaccinations, less medicine, fewer antibiotics, more family time and healthier meals. 

We don’t need to be afraid of doing our own homework.  We don’t need to be afraid of asking serious questions at the doctor’s office and changing doctors if we get a response that makes us unhappy.  We don’t need to be afraid of putting our kids on a dairy-free, gluten-free diet for fear that it is too hard or that our kids just won’t eat if we don’t let them eat things that are toxic to them.   Our kids are counting on us.  There is no time to be afraid.  Every minute counts.  Every meal counts.  Let’s stand up for our kids and do what our mothers taught us.  To be strong.  To be brave and to fight like crazy for our kids.    

Finding Peace

It was 2008.  Marley was 5 and Skylar was 2.   I left the girls with Chris so my friend, Jennie and I could attend a spa party in the area.  An acquaintance of mine had this all set up in her house….massages, facials, manicures and YES…even a “spiritual counselor” there for our enjoyment.  It was to raise money for a local charity, and lord knows…I needed a break.  So after my facial, I walked into the dining room for my appointment to talk to the lady who supposedly could “see my aura”.  I have always been interested in those who have a sixth sense so I was interested in what she had to say but I was completely unprepared for what happened. 

I sat down across from her and smiled.  She was not much older than I am and looked like everyone else you would see on the street.  She let me get comfortable then looked directly at me said, “I know this is a day of fun for you and I am sorry but I see blackness in your heart.  What is it that you are holding inside that makes me see blackness in your heart?”  I was surprised by own reaction.  I started to shake and tears immediately welled up in my eyes.  It was like I needed to talk about this but no one had ever asked.  Before I knew what I said, it was out.  I had said it.  I said, “I let my 5lb premature baby girl with a brain bleed get the Hep B shot and many other shots afterwards and now she has autism.”  Wow….there….it was out.  Did I really say that?  Good God!  How did I say that to a complete stranger and hadn’t even told my husband?  But she was gracious and actually said to me ”Oh…so YOU were the reason I was supposed to come here today.” 

I stopped shaking and smiled through my tears.  And then she said something that will stay with me forever.  She said, “Your daughter chose you to be her mother.  You should be proud.  There is no need to be sad.  There is no need to feel guilty.  These are life’s lessons and that is why we are here.  To grow and learn.”  The rest of what she said is a blur.  But those are the words that I carry with me.

I know that the knowledge that Marley has imparted on me has saved her little sister and brother.  I am sorry she had to be the guinea pig.  I’m sorry that I had to learn about out-of-the ordinary allergic reactions from her. I’m sorry I wasn’t aware enough to do my homework before vaccinating.  But I do acknowledge that because of her, I am a better person.  And I am honored that she chose me to be her mother.  I am honored that she saw strength in me that I didn’t know I had.  And I am honored that she thought me strong enough to share what I have learned with others.  Maybe she chose me because she knew I would fight like hell for her.  Maybe she chose me because she knew I would try to help other kids along the way.  Or maybe, I just needed to grow spiritually.  I don’t know.  And I won’t until I cross over.

There are many people that tell me that they are sorry that they weren’t there for me during that really hard time in my life when Marley was regressing and… well…you know the story.  But I tell them….it was my journey.  I shared it with Chris and Marley.  And we had to live through it to grow.  And I am still living through it.  And still growing and still learning.  My heart is softer now and my words are kinder.  But I have a fighting spirit that is stronger than ever.  My daughter WILL heal.  And Chris and I will be there to see her succeed.  So there is no reason to be sad for us.  I feel like the luckiest girl in the world.  

The day the house went quiet

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I have to say…this is hard for me to write.  I am the type to focus on the “how to get better” and not on the “how did we get here?”  But it is part of Marley’s story, albeit, the hardest part.  Was it in my imagination?  Was she really the sweet connected baby I remembered her to be?  Did the vaccines take a toll on my baby?  So just today, I finally pulled out the baby videos along side her vaccination schedule and all the doctor’s notes, sat down with a box of tissues and pressed play.  I needed to know.

The beginning was wonderful.  She was so cute and responsive.  She made great eye contact.  By 10 months old, she was starting to use words like bye bye.  Then at 12mos, you can see a bit of a regression after her 12 month chicken pox and polio vaccines.  But she bounced back.  She is still looking at me when I call her.  At 14 months old, I watched her play peek-a-boo with the cat through the window and laugh.  I watched her have a pillow fight with daddy laughing when he called her name.  She was mouthing every toy, but she was still talking.  When she started walking at 16 months old, she was saying mama, dada, papa, bye bye, kitty and a few other words.  She was late to walk because her left side was affected by her brain bleed.  But she did it.  She was determined.  I looked down at the doctor’s notes at age 15 months.  She got a clean bill of health.  She was cognitively behind one month, but was catching up to her adjusted age.  (She was a preemie.)

Then it happened.  At 18 months old, she got an MMR and a DTaP.  That is 3 live viruses and 3 dead ones.  Apparently, her immune system couldn’t take it.  It rocked her world.  The home videos start to turn ugly.  We take her to the beach.  She cannot pull herself out of the water.  We try for about 30 minutes but she just screams and thrashes and heads back to the water.  I keep watching.  It seems the only things that can soothe her are music and Sesame Street on TV.  She dances, but no longer dances FOR me.  She dances because she is rocking to the music.  She no longer looks at me when I call her name.  The tantrums turn scary.  They go on for an hour or longer sometimes.  We even video taped one.  It made me shake all over to hear those screams again. 

Then there is the comment that will stay with me forever.  Marley’s nana told me,  “I used to come and stay at your house and listen to Marley babble in her crib for at least 30 minutes in the morning.  Just playing.  Just using her voice. Then it stopped.  I didn’t hear her anymore”.  That was like a knife to my heart.  The very true realization that there was nothing.  No noise.  Just screams. My baby stopped talking.  She stopped babbling.  She stopped responding to me.  She stopped looking at me.  She was gone.  It was like someone came and took her voice away one night as she slept.  That was the day the house went quiet. 

Our life was pretty ugly for a while.  We endured out-of-body like tantrums.  Earth shattering screams.  Anything and nothing would set her off.  She would hurt herself and others during these episodes.  We took her in for an EEG to check for seizures.  It came back clean but they said that doesn’t mean she is not having them.  It just means they did not catch her in the midst of one.  But the worst is when my rock of a husband finally caved.  He cried.  He NEVER cries.  He was so afraid of Marley hurting herself.  Then is when we started looking for help.  REAL help.  Not medication to drug her up.  (Believe me, we were offered the open-ended Rx of Prozac for my 2 year old.)  No….we needed REAL help.  We needed to heal our baby.  That is when our autism road to recovery began. 

Chris was surfing the web and he turned to me and said, “I think I found something.”  We watched a video of Dr. Bernie Rimland talking.  He is the founder of DAN!  Defeat Autism Now!  It looked interesting and it was our best lead since we walked out the pediatric neurologist’s office just shaking our heads at the doctor’s condescending mannerisms and offering of Prozac to our 2 year old baby girl.  We watched Dr. Rimland some more.  This looked interesting.  He was saying that our kids are SICK.  That there are many approaches like diet and supplements that can help.  Chris said “There is a conference in Boston coming up next month.”  I remember saying “I don’t think we can afford for me to go.”  And then my life partner said to me…”I don’t think we can afford for you NOT to go.”  And boy was he right.  That is why I married this man.  When push comes to shove, he stands up for what is right…no matter the cost.

I did go to that conference in Boston in 2005.  I met other moms with similar stories and learned their successes.  I listened intently to the most cutting edge science coming out of Massachusetts General Hospital in Boston.  And finally, I cried because I didn’t realize that her 10 loose bowel movements a day WAS NOT NORMAL.  I cried because I had just watched my daughter slip away.  And I cried because I was finally getting come answers.  My daughter would start to get better.  I just knew it.  

Dream Big

Since the time we suspected our daughter had autism at 2 ½ years old, we have been treating our daughter biomedically. 

We put her on special diets.  Her bowel movements improved.  We put her on supplements to treat her specific deficiencies.  Her focus improved.  We did ten mild hyperbaric oxygen treatments (mHBOT).  She began to talk.  Years more mHBOT treatments, her socialization improved.  She began to come back to us.  We detoxified her on an on-going basis using a far infrared sauna.  We saw better socialization.  We treated her GI system medically.  Her colonoscopy showed signs of chronic constipation and endoscopies showed eosinaphilic esophagitis.  These results led to more allergy testing and removing more allergens from her diet and life.  Her horrible GI pain went away.  Her behavior improved dramatically.  Add to this, regular OT, PT and Speech therapy and we have been a busy bunch.

It was September 2011.  Marley was about to turn nine and was starting second grade (she was held back a year) in the autism classroom.  Excuse me, they call it the “system-level” classroom.  She was mainstreaming about 30 minutes per day but it was becoming clear that she could not handle the mainstream classroom.  By the end of September, they had pulled her out completely.  She had come so far….but now, we were at a standstill.  Her anxiety was becoming more and more of a problem.  Her rigidity was taking over her life. 

I am a believer that if you listen carefully, life will point you in the right direction.  You just have to listen.  And let’s be honest, I was eager to find something that would move my daughter forward.  So when a fellow autism mom posted about her experience at Brain Balance, I was cautious but interested.  The program focuses on finding the weaker side of the brain, and then stimulating the weaker side until it can work cohesively with the stronger side.  I asked around and the program got good reviews from my most trusted source – other autism moms that I have met on my journey.  So by October 2011, we were off and running.  Again.

The Brain Balance initial evaluation results came as quite a blow to me.  I am very proud of the progress Marley has made over her short lifetime.  But here, they were doing standardized testing which measures her against her “neuro-typical” peers. In addition, they were testing her primitive reflexes, her eyes, her coordination and the like.  So when I heard the words “Your daughter is in the 1^st percentile among her typical peers”, it brought me back to the reality that although she had come so far in the past 6 ½ years, we still had a mountain to climb. 

We threw our lives into the program.  The daily at-home exercises, the listening therapy in one ear four times per day, the driving 45 minutes each way to get to the program to stay for an hour of intensive right brain stimulation both in the sensory-motor room and then in the cognitive room.  But my Marley took to it as she always does.  No complaining.  Just recognizing that this is part of life. 

The regression was awful.  And school took the brunt of it to be sure.  We saw tantrums and horrible rigidity---the exact thing I took her there to get rid of!  But then glimmers of success.  Like little rays of light shining through periodically.  With only a little coaxing, she picked up an intermediate chapter book and proceeded to read the whole thing by herself.  And she was proud to tell me what each chapter was about.

But the big success was during Christmas break.  Her brain had a chance to rest and her body was starting to catch up to her brain.  She could talk to family members on the phone without delays and with appropriate responses.  My sister (Marley’s Aunt) actually cried tears of joy when she talked to Marley.  She said, “I have never had a conversation with her before.”  It is so moving when you can finally get to know a child that has always been physically there, but unable to connect.  My excitement for the program was starting to grow.  I haven’t felt this way since hyperbaric oxygen treatments gave Marley a voice.

Then, in early February 2012, I went to meet with Marley’s school team.  The mainstream teacher informed me that they have been slowly re-introducing Marley to the mainstream classroom and Marley was participating.  Actually raising her hand to answer questions and being an active participant in the classroom discussions.   Not simply tolerating being there.  Before, it was an exercise in futility.  Trying to get her used to a situation that was so over-stimulating to her that she could not bear to be there.  She would run out the door.  She would scream.  She would stim.  So when the teacher told me that my daughter was actively participating, I almost fell out of my chair.  My daughter?  Raising her hand to answer questions?  Yes…the teacher told me.  And working with other children in reading group.  So…she proceeded, I want her to join my class more often.  Everyday for reading, science, social studies, recess, lunch, and specials.  If all goes well, after Spring Break, we will have her join us for math as well.  My heart was beating out of my chest.  Then, her special education teacher proceeded to tell me that she was scoring at 85% or above on all of her end-of-unit testing in math and reading. 

I knew what I had to do.  I said to this group of educators and therapists…”My goal for her is to have her fully mainstreamed by third grade with only resource room help.”  They all looked at me and smiled.  They said, “It is an aggressive goal, not certainly not unattainable.” 

Marley’s end of first session Brain Balance testing showed she had moved up EIGHT YEARS in auditory processing.  No wonder she was doing so well at school.  We are currently in our second session at Brain Balance because she still has some work to do.  But now, everyday, I see improvements.   She does her homework without fights.  And she uses a pencil!  Her writing was so bad before that she refused to write…she would only type. 

She is noticing smells like my coffee and things baking in the oven.  Her sense of taste has changed.  She used to like very spicy and flavorful things.  Now she can no longer eat them.  Her sense of taste is much more that of a typical child.  She plays with her sister all the time.  She asks me about my day.  She asks her sister questions about school.  Her little brother amuses her.  She sings him songs and laughs when he sings them back to her.  She is making friends at school.  She comes home and tells me about her friends.  Their names and what they did at school together.  She has never had a friend before.  Never.  And that is the best thing that could have come from this intervention. 

Things that I did not dare to dream are coming true.....things like mainstream classrooms and friends.  I was too scared to dream them for fear of letting my daughter and myself down.  But apparently I was wrong.  I need to dream big.  I need to know that anything is possible.  

    

The Edge of Glory

 There I was….driving in my soccer-mom minivan.   My head whirling with many thoughts.  But not really typical soccer-mom thoughts.  You see, I am no average soccer mom.  I am a mom to a beautiful young nine year old girl with autism.  And mom to stunning, witty (and soccer playing) six year old daughter with sensory processing disorder. And mama to a 19 month-old little boy who is so typical it makes me cry. 

I was driving to see the pediatrician for his 18 month old check-up which usually is centered around vaccinations.  In my head I was imagining how it was going to go down when I told her no vaccinations today.  How I would get the standard lecture. You see, I put him on a very conservative immunization schedule and he was due for his third DTaP shot today.  I was imagining what she would say when I told her that ever since his third HIB shot at 15 months, he has had loose stools.  I just knew she would look at me like, “how could that possibly be related?”  Just like she looked at me when I told her no more shots for my second daughter after she regressed terribly after her third DTaP shot at 12 months.

This pediatrician knows me. She knows my family history.  She knows that my father got polio from a polio vaccine when he was a child and stayed in the hospital a year.  And that my father also suffered from Guillain-Barre about five years ago for a six-month spell.  She knows not to push too hard or I might push back.  

But then this song came on the radio.  Lady Gaga’s “Edge of Glory”.  My eyes welled up with tears and I felt my strength come back.  Because that is where we are with Marley…my oldest.  We are on the Edge of Glory.  We are getting closer every day to recovery.  Our latest intervention is with Brain Balance and the progress we see is remarkable.  It is like watching a flower bloom on fast forward.  It is nothing short of miraculous.

And because I have followed my intuition, she is healing.  She is coming back to us.  I have learned never to ignore that intuition again.  There was a time where I put my children’s health in the hands of a pediatrician.  But now I realize that doctors do not know my children as I do.  And every child is different.  They need to be treated as such.  So I have taken it upon myself to be in primary charge of their wellness.  To educate myself on what is best for my children and to monitor their diet, their sleep, and their exercise.  I pay attention to what foods cause problems for them with their behavior and bowel movements. I learn what supplements can enhance their wellness and why.

 And my biggest task and life’s purpose is to bring my oldest back from the grips of autism.  Because she belongs with us.  Not with a diagnosis.  And our family is on the Edge of Glory.  Waiting for Marley to join us.