Tuesday, March 13, 2012

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 detoxify her on an on-going basis using a far infrared sauna.  We see 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 1st 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 staring 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.  



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