Thursday, June 11, 2015

Fifth Grade Graduation Day

Here we are.  Fifth grade graduation.   The school gym is hot and sticky.  It is noisy with kids eager to get summer vacation started.  The smell of sweaty kids is in the air.  There is laughing and talking and all the echoes that a gymnasium brings.  Parents have gathered with their cameras and video cameras to watch their 5th grader move on to middle school.  I smile at my husband who has been my rock, then I slowly scan the room taking it all in.  The proud parents smiling.  The wistful parents with misty eyes.  The busy parents chatting with each other.  And I am amazed that we even got here.

For me, this day brings a multitude of emotions.  My 5th grader is not your typical 5th grader.  She has challenges.  She was born with a major brain bleed that affects her motor skills.  She has autism.  She has autoimmune and other medical diagnoses.  I flashback to when she started kindergarten here, seven years ago.  Marley was five and she and I were both frightened.  She had to be in a self-contained classroom because she couldn’t tolerate any sensory stimuli.  She had a few words but she did not talk in complete sentences.   Many days, I had to carry her into the school, kicking and screaming where I would place her into the care of “autism specialists” and they would escort her into a tent in a quiet corner of the room where she spent most of the day shivering and receiving therapies in the tent.  I would walk back to my car and cry for hours, not knowing if I could stand the pain much longer.  It was a heartbreaking time. 

The following year, she was left behind to try kindergarten again.  This year, they would try to bring her to the mainstream kindergarten classroom for a few minutes each day.  Maybe just for circle time so she could see what typical peers do.   She needed someone by her side every minute to keep her focused and engaged.  And even then, it didn’t last long.  Then, back to the self-contained classroom she went. 

In first grade, a boy in her self-contained class sent the special needs teacher to the hospital with a concussion.  When I brought her to school the next day, they had moved my daughter’s desk across the room…. To keep her safe, they said.    The boy had his own “body guard” assigned.  And my heart sank.  Something had to be done.  She could not stay in this environment.  We were still using hyperbaric oxygen therapy and getting progress but there had to be more.  I did more research.  Her diet was extremely healthy and free from anything inflammatory.  Then we found eosinpahilic esophagitis and removed eggs from her diet (in addition to the gluten and dairy and soy she was already free of) and removed the cat from the house and she got better still.

In second grade, I decided that I would take a leap of faith and enroll her in the Brain Balance Program.  It was my last ditch effort to get her mainstreamed.  By May, her team recommended full mainstreaming in 3rd grade.  I remember the school speech therapist saying... "Kelly ... this is a BIG deal. Once they are in self-contained classrooms, it is hard to get out."  I had to hold back my tears of joy.

Third grade in the mainstream classroom was quite an adjustment.  Her constant scripting (reciting lines to herself over & over again) was disruptive and her rigidity led to some meltdowns.  On her bad days, her screams of frustration were heard throughout the hallways.   However, her teachers called meetings often to discuss what we should do.  They involved me in her education.  They devised ways to keep her focused and her anxiety levels down with schedules and modifications.  And the kids….they embraced Marley.  They watched out for her.  If there were younger kids whispering about her in the halls, the kids in her class stepped forward and said something to those kids.  They would not tolerate it. 

Over the summer, we used ALA (alpha lipoic acid) and saw a whole new self-aware Marley emerge.  It took her healing to a new level and teachers noticed right away.
Fourth grade got better still, due in large part to a brand new, fresh out of school, teacher.  She was even-keeled, never got upset, and worked very hard to accommodate Marley and her needs while helping her reach her potential.  One day, she gave Marley a watch.  Marley had been anxious in music class and no one could figure out why.  Turns out, there was no clock in the music room, so Marley did not know when it was time to leave.  The watch changed things for Marley dramatically.  Her anxiety came way down.  Her scripting stopped.  We were off and rolling.  Her reading was on-grade level.  Math word problems were difficult but Math computation was her strong suit.  We got her a laptop so she did not have to hand-write everything and her creative writing took off too.

In fifth grade, Marley’s fourth grade teacher was moved up to fifth grade and Marley got to have her again.  We discovered via lumbar puncture that Marley has Cerebral Folate deficiency, and started her on Leucovorin for the folate and LevoCarnitine to support her mitochondria and it was like her brain suddenly had the energy it needed to THINK. 
It has also helped her anxiety a ton.  Her teacher raised money and bought exercise balls for the kids to sit on instead of chairs.  The kids loved them.  Marley loved hers too.  Marley got into a routine.  She was serious about her homework.  She did it right when she got home and often independently.  She was a transformed child. 

As I am reliving all of these memories, I realize that Marley is HERE… this big, noisy, echoing gym.  She is not sitting with me. She is not wearing noise-blocking headphones.  She is not stimming.  She is not flapping.  She is not scripting.  She is not in her own world.  She is not being escorted by an aide everywhere she goes.  She is sitting with her peers and then waiting patiently in line.  She is looking for us to wave at us.  She is smiling and fully connected.  She is aware of this moment and all the excitement this time brings for her.  And this makes my heart fill with pride and gratitude, for it is then that I grasp that sometimes you have to feel the pain and the struggle and do the incredibly hard work to really, truly feel the joy.  

Marley has waited patiently in line, and finally, her name is announced into the microphone.  When it is, an enormous cheer erupts from the audience. I gasp at the hoots and hollers for her and the enormity of support from her fellow students, other parents and teachers in this gym.  I start to shake gently as my tears start to flow.  It is evident that people love her and have been cheering for her right along with us.  Her success makes everyone in the building proud of her.  Marley takes her certificate and poses for a picture with her teachers and then very casually walks off stage just as she is supposed to do.   She stands and sings a song with her class to the parents.  She participates in a dance with the other kids and calmly watches videos of moments past.  Things that would have been impossible just a few short years ago.

I close my tearing eyes and just let these feelings rush over me like a tidal wave.  I slow my breathing and just feel the pure joy of the moment…… because I have no doubt there will be more challenges in the future but right now…..I just want to breathe in the happy.