Thirty days

We are 30 days into the medication.  We have changed it once and increased the dose once.  I am not resting any easier with it but Espen may be. 

Yesterday the teacher told me he is more focused and attentive.  This makes my heart happy.  If the medication does nothing but allow him to be present at school I will accept it... because he has not been present mentally....

I have made calls and we will have a screening at the Autism Diagnostic Clinic... we will see where we are at and where we go. 

Espen is signed up for swim club and will swim in a competition on October 12...  I am proud of him.  But it is not easy...he goofs a lot in the water.  He prefers to be submerged and that is no way to swim breaststroke!  But being submerged calms him so I am ok to sit and let him be underwater like a shark!

He is signed up to bike... he loves his bike.  Omaha BMX and recycle bike store has been amazing and full of great information.  He loves to go to NOWEAR compound and ride with the big kids.  He is roughly on the edge of dangerous.  But we will invest and encourage because it is what makes him happy and we can leverage this activity to our benefit. 

It is with these activities that I think he will be able to just be "accepted" for Espen... no one takes mention or note of the quirky way he behaves.  It makes me so happy to see the joy in him when he is doing an activity he thrives at.  And it makes the complaints about how hard school is easier because I can re-direct him to one of these fun activities! 

We have a long road ahead... and hard hard days ... but today the sun is shining and tonight we watch our 5 year old race his bike.... and we are OK with whatever happens next. 

Let me tell you the diagnosis got longer....

Where do I even begin?  For 5 years I have lamented on the trials and tribulations and utter joy in my life.  We have experienced things in our family that no one admits to.  I have blogged about many of them.  From the poop massacres to the trip to the emergency room after swallowing dog seizure medication ~ Tonight before bedtime I discovered a HOLE in his bedroom wall where he pulled the wallpaper off and dug a hole with his finger in the drywall... just this morning because he needed to see what was behind the paper.... It never stops!  I have shared the really hard and the mildly funny.  I have been honest about the insanely wild and freaky scary.  I have humorously shared the funny moments and I have cried while deciding to share others.  Tonight I told Espen I was going to write a blog about our day and he said "it would start with the naughty and be very humorous because we laughed a lot today then it would go back to the naughty naughty because I made a bad mistake at school and then it would be lovey dovey give me a kiss mamma".... I guess he knows. 

For 5 years we managed.  We dealt.  We coped.  We succeeded.  We cheered.  We figured out one thing and then were handed another to deal with.  It never stops.  Never.  Our life never stops.  It is always wildly exciting (sometimes not so great but exciting).  We told the truth about our lives to anyone who would listen and at every single pediatricians appointment.  We asked for help only to be told mommy was high strung and should relax.  We asked some more.  We sought behavioral counseling, occupational therapy, speech therapy.  We asked for more help and got into special pre-school.  We sought more help this last summer and what came as no surprise to us was a diagnosis of ADHD and Oppositional Defiance.  If you need to know what ADHD is like I would encourage you to read these words because they are powerful and give a clear picture to someone who may not understand what living with my child is like.   We went to the professionals and with many sleepless nights and crying (on my part) we decided to medicate him.  And still just that diagnosis was not right.  Yes it certainly fits and answers some questions about our beautiful child.  But it left me with many more unanswered questions.   We saw we needed more help. 

This lead us to a behavioral pediatrician.  One who has been doing this for 30 years.  He gathered information from every place we have ever taken Espen before meeting with us.  We completed screenings on everything from anxiety to autism.  The teachers at the school, the therapists ~ they all helped.  We then had a long appointment. 

It has been a week now.  I have needed that much time to digest and process what I heard.  I needed that time to call the doctor back and ask more questions.  I needed that time to work out what I felt.  I needed the time to cry and be mad and wonder if maybe this professional is wrong.  So I called another professional.  She agreed with the pediatrician and invited me to continue asking the questions about everything they say.

Not only will we be faced with understanding ADHD and oppositional defiance in our 5 year old but we must also open our hearts and minds to understanding autism.  High functioning autism as the official report says.  And we will understand and manage and deal with these for the rest of our lives. 

Not what I expected at all, but it explains some things and fits in some ways. The diagnosis helps us understand why he struggles to look at me ever, why he communicates in amazing ways with adults but not so well with children, why he grasps information and repeats it verbatim, why changes in environment drive him mad, why he takes things so literally, why he lacks empathy, why he interrupts to talk about himself, why his social skills are extremely lagging, why he remembers with amazing clarity and detail directions or moments and a host of other things.  It helps to explain some weird behaviors we have dealt with for years and we managed them.  It helps to explain our on going struggles with some things.  When I said a few months ago "Espen is not mean or naughty, he lives in his mind and I can't reach him sometimes"... I was right.  When my sister said a few years ago that she thought I should investigate Asperger's or autism & I got upset, she was right...  None of the diagnosis explain pain tolerance, his amazing physical abilities, that he is funny, he tells amazing stories and imagines things that are so creative.  But we may be closer to unlocking some doors to understanding our son. 

What do we do now?  We keep at it.  We get our bearings, read a lot of information, ask people, visit with new people, sign up for supportive things, get an IEP at the school, prepare our son for hard things like kindergarten!  We invest money in things he excels at, sign him up for bike clubs and racing and swim. We let him try what appeals to him.  We put him near people who accept that he can do things like big kids. We build a team around him that can make the social problems easier, that won't call him naughty or bad when he has meltdowns, that accept that he must smell them or touch them to understand them.  We challenge him and we accept the limitations. 

We also can talk about the diagnosis.  We can talk about what it is like to live in this way.  We can talk about what it is like (as we understand it) for Espen at certain moments.  We can share our experiences.

High functioning autism, like ADHD and the medication, are tools in our box.  It is a piece to the puzzle (if you will) that makes up our son.  Some days we will GET it and some days are going to be a giant swirling black hole full of fear and frustration.  Some days we still won't have all the right tools and those days are going to be just as hard as before we knew. 

One thing is certain.... We love this little boy to the moon and back... and nothing will stop our loving support for his future.