You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Friday, November 27, 2015

Our Fight With Prematurity...

Dear Family and Friends,

Our fight with prematurity will never truly be over.  Fighting for a micro preemie doesn’t end when they arrive home from the NICU, or when the reach age two (when age adjustments end), or when they graduate out of interventional services.  The fight…our fight, has never stopped.  Our opponent just changes tactics.  Six years later, we continue to feel the effects of prematurity in our every day lives.  While the struggles are no longer life and death, there are struggles all the same as our miracle boy continues to grow up.  

We are SO thankful that he is growing up!  We are so thankful that he is here, that he is functional, that he is bright and loving and everything (and more) than we ever dared to dream he would be.  But we walk a fine line between typical and delayed, as Everett continuously bounces from one side to the other.  In an attempt to help Everett achieve more typical skills, we have had him in private occupational therapy for over a year.  Very early on, his therapist diagnosed him with Sensory Processing Disorder, which is a dis-regulation in how the body interacts with its environment.  For Everett, it really made sense.  We pushed the therapy, hoping it would be an answer to so many of his struggles.  Then, in February, Everett began displaying what appeared to be seizure-like activity.  While watching TV or riding in cars, his head would jerk, his mouth would clench, and he would go to a place of complete inattention.  It scared me.  Shortly after this began, Zac was diagnosed and our world was spinning so fast that it, and occupational therapy, got pushed to the side while we fought Zac’s fight.  In June, my parents brought it back to my attention as they were scared too.  I recorded a few episodes, which by that time were increasing in frequency, and took it to our pediatrician.  We were referred to a pediatric neurologist.  We made two trips to CHLA for seizure testing and a neurological consult.  Thankfully, Everett was not experiencing seizures.  These episodes were involuntary movements, called tics, which can be normal for his age group.  But the neurologist was concerned about Everett’s developmental delays (he remains two years behind in fine and gross motor skills).  

The neurologist diagnosed him with developmental dyspraxia, a delay in the communication from the brain to the fine motor muscles.  In the testing, Everett was unable to make the “ok” sign with his hands, as he couldn’t control his muscles enough to do it.  It made me tear up to watch him frustrate, as his mind knew what to do, but his body just wasn’t listening.  He is so bright…everyone has told us that…but he is stuck in this body that doesn’t work as well as it should.  I can’t imagine what he feels like.  The neurologist also said he had several indicators for ADD/ADHD, and she felt he should be tested.  We completed this testing a few weeks ago.  Everett does have ADHD.  Contrary to what most people think about ADHD, it isn't inattention to people or to the environment.  It is hyper-attention to everything in the environment and an inability to filter out what is important vs what isn’t important.  To put it simply, a child with ADHD hears the white noise of a fan and categorizes it with equal importance to that of his teacher.  Therefore, his brain takes in everything constantly.  This constant barrage of stimuli makes distraction easy as the child attempts to respond to all the stimuli equally.  Again, I can’t imagine what he feels like.

So where do we go from here?  Well, we are slowly figuring that out together.  We attempted to get Everett an IEP (and access to therapy interventions) at school.  We were told that because he is “cognitively intact,” meaning he is learning at the same rate as his peers, that his physical delays aren’t of concern.  It doesn’t matter that at six years old, he still can’t run properly.  We were told that he literally has to fail before the school can help him.  We were successful in getting a 504, which is an accommodation plan for his unique needs.  This allows him to use a wobble stool in class instead of a chair, allows him frequent movement breaks so he can get his wiggles out, offers him a weighted vest that gives him sensory input to calm his body.  Having a 504 also puts him on the radar of the the occupational, speech therapist, psychologist, and nurse so they are watching his progress.  He also has an incredible teacher who is happy to do many therapy exercises with him in class.  

There is such a stigma associated with ADD/ADHD.  Everyone has an opinion on the validity of the diagnosis and how best to treat it.  I know for us, this diagnosis has been an exercise in putting aside our own preconceived notions as we look how best to represent Everett’s needs.  As his parents, we are not ashamed.  It is our job to protect his self esteem and set the example that his ADHD will make him uniquely gifted.  We continue to research interventions to help him overcome his delays.   We continue to look at homeopathic and pharmacologic methods to help him settle his body.  We continue to make hard decisions with our best intentions.  We continue to be thankful for his life and the amazing things that he has accomplished.  We continue to push him to be the best person he can be.  We continue to fight every single day against his premature birth.  Prematurity never ends.  The fight rages on.  And we will never give up the fight because his life is worth everything!


The Bollinger Family