ADHD in our family, welcome to our journey

As I was laying in bed last night reading a totally non reality related book and thinking through our hard day, I thought there are people who are just joining our journey that do not know.  Don’t know how our journey got to be to this point.  Don’t know how exactly ADHD impacts us (and many others).  Don’t know how to just ask me.  

ADHD became apparent in our lives when Espen was little.  We had many failed play dates because of his physical abilities, crashing, lack of empathy, etc.  We started to withdraw from attempts to interact with peers because I got tired of seeing the hurt in my child.  

We lucked into finding a therapy center after a failed pediatric appointment.  The therapy center identified Espen as having sensory processing disorder (SPD). In short, SPD is a condition in which all of the senses do not process into adequate responses.  For example, Espen may have gotten to close to a child, the child fell and cried, Espen laughed because he did not comprehend pain, empathy, close body proximity.  In a classroom the teacher hangs all the pretty colorful art off the ceiling, the air moves that art causing constant motion, Espen can not concentrate because he can not block out the constant motion of the art.  These are just simple examples that impact Espen.  SPD encompasses all the senses and there are 8 of them.  A therapist once told me this.... “For Espen, and many others with SPD it equates to being the driver in a car with 3 friends.  The music is up, one in the back is jumping to the beat, the traffic is heavy, everyone is singing.  Suddenly there is a blizzard and the snow is so thick you can not see anything by white whipping past your car and the windshield wipers are on full blast.  There is ice on the road and you feel the car slipping.  Nothing shuts off and you just have to navigate through the noise, icy conditions and blinding white.”  It is like this all the time for him.  ALL THE TIME.  So he had therapy 2-4 times a week for a few years to manage the sensory needs.

He became school aged.  And we had epic failures until finally we arrived at a behavioral pediatrician who diagnosed Espen with not only SPD but also  ADHD, ODD, obsessive tendency and Aspergers (which now falls under Autism category).  Let me tell you about the ones I pay most attention to.... Attention Deficit Hyperactivity Disorder.  It is a disorder impacting attention issues, inability to focus and impulsivity.  ODD is oppositional defiance disorder and for years I have not paid much attention to it but in short defiance and disobedience to authority, especially the one closest (lately I see it).  Obsessive tendencies are uncontrollable unwanted thoughts that causes anxiety and compulsive behaviors until the obsession is satiated.  It can be something material, internal or for us a date/activity.  

So we were diagnosed and the pediatrician recommended medication for ADHD. I fought it.  I wanted to try diet and behavior counseling.  We tried.  Basically it was more frustration and his behavior did not progress in positive ways.  One day the pediatrician told me his brain does NOT make the appropriate chemicals for control.  The meds are supplementing those chemicals so he can control his impulses, control his body and have ability to focus on tasks at hand and not be in 50 places mentally and physically at a time.  The doctor asked me if my child needed glasses would I just move him to the front of the room or would I get him glasses.  As much as I want to continue to fight medication, I have to put my issues aside and recognize what is in best interest of Espen.  

We did learn however that food is a big deal.  When we feed him healthy, preservative free food without any added colors he is much calmer.  Sugar is not the issue.  With or without sugar, Espen has impulse control and wiggle fidgets.  Food coloring is perhaps the absolute worst thing.  Quite a controversy but when my child has Red, Yellow or Blue food colored foods he becomes someone else.  When we give him a Dr Pepper (no color)he will calm down because the caffeine kicks him into calm instead of hyper.  Conversely, Mt Dew is the devils drink making the impulses worse and he becomes mean spirited because of the color.    Imagine my challenges in helping him be part of a social group and every snack includes a Gatorade and some delicious colorful snack.  Imagine every school party, every parent bringing lovely RED cupcakes or GREEN frosted cookies.  And they all want to “one up” the other and send goodie bags home with delicious colorful candies.  He just becomes a mean beast often so impulsive and “out of control” that he hits and cry’s irrationally.  Food matters.  Ingredients matter.  

Espen is now 9.  On most days his quirky odd behavior is just “Espen”.  Some days it is extremely manifested.  He is medicated, especially for activities and school.  I am human and I have forgotten.  It is OK to ask me, text me or just ask Espen.  He knows.  At home we give him med breaks.  Sensory issues greatly impact him.  Large groups of people, standing in lines, noise, movement, smells.  His attention and ability to focus are shortened.  He needs constant reminders and redirection.  When you glance out at a field and see Espen chewing his finger, it is because there are 100 other things bothering him and he is calming himself.  When he is in line and he pushes someone he is most likely having a hard time with how close people are to him.  When he can’t get his work done and complains about a smell, he smells it and he will not be able to concentrate on anything.  There are hundreds of examples I could give.  

Over the years I have amassed an impressive collection of books on the subject (see attached photo... this is our ADHD collection).  I have read all or part of them.  Most have notes scribbled on the sides. I am a parent expert I suppose.  I have to be.  And we are open.  Very open.  It used to be that this diagnosis was shameful.  It is less so now.  The debate of over diagnosing runs through communities and I stay out of it.   The fact for us is ADHD is a very real struggle.  It impacts all three of us.  We have late nights, early mornings, constant movement, strange conversations.  We have concerns and confusion and anxious fears.   We have sensory equipment at home and can provide it at school.  We are not bad parents who are raising a bad child (we have heard this).  We are parents doing our best to understand and guide this little boy and love him unconditionally through all the good and bad moments.  We are parents learning every day about him and ADHD and we are all figuring out how it works and how to help.  And we will openly talk about it.  We will share what has worked and what has not.  We will do our best to educate those around us so that there is no shame and so that Espen can be who he is and participate with his peers.  

So if you are just joining our family here in Cashion Oklahoma, you now know.  I am open about talking about issues, concerns and behaviors.  I am not however going to accept judging comments and inability to accept my child because of ignorant notions.  Education and information help all of us, but especially my child as he navigates this world we live in.  Education helps your child also in accepting people with differences and acting as a good peer.