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. 

Today I medicated my child.

Today I medicated my child.  It was not a decision I made lightly.

I cried.  A lot. 

Our meeting with the child psychiatrist was the hardest meeting I have yet to be to.  We talked for 2 hours about Espen's needs, quirks, meltdowns, hyperactivity, problems and strengths.  She quickly got to the heart of many issues and wasted no time in letting me feel heard and understood. 

Finally after having first been heard at PTC when we started occupational therapy. 

My beautiful little boy has ADHD/ hyperactivity/impulsivity/ oppositional defiance as well as Sensory Processing Disorder and may be on the cusp of some anxiety type concerns.  We are going to screen him for a spectrum disorder, sleep disorder and other behavioral issues. 

Imagine my grief and anger at having ASKED the right questions and pushed for things with the pediatrician and nothing happened for him.  Imagine my disbelief when I was able to just feel heard.  Imagine my heartache when I realized I could have perhaps found her sooner.  I am his best advocate and I ask and seek many services for him.  But I also learned how to best manage his quirks and we just rolled with it.  I tried all summer to find the right place and today I am some steps closer. 

I assure you my life with my 5 year old resembles your life and 5 year old, but ours is EXTREME.  In many ways.  I can give an example:  After this long appointment, we had 2 errands.  Second one was Target to get the prescription.  He rolled on the floor for most of the shopping experience.  I let him.  I knew he had reached his max and he was not hurting anyone.  Besides we had to wait for it or come back.  Once home and fed I gave him this new prescription.  He wanted to build a fire.  Ok.  Random but we did it.  With supervision, he played in the fire with sticks for nearly 2 hours.  Then he decided to eat a worm.  And explain to me that it was no more mean to eat the worm then using it to fish (he had me there).  Then we played motor cross.  While playing I had to explain "diabolical" because he had been using it almost all day.  Once he learned the simplest meaning, he continued to use it.  So we had a "diabolical" dinner.  Finally after dinner we spent over an hour jumping on the trampoline and telling silly stories.  I assure you at 9 when he went to bed, nearly by force, he was not ready to.  He could outlast me.  In between all this was a ton of chatter.  Some video games.  A few episodes of Kung Fu Panda.  He climbed a tree and caught a katydid.  He went INSIDE the neighbors house with said bug and dirty shoes totally uninvited.  And he periodically tried to convince me he does NOT need to go to school tomorrow.  I cleaned the kitchen floor twice.  I did laundry.  I made meals.  I answered more weird questions than GOGGLE did.  I said be sure pee stays in the toilet, pull your pants up and get your finger out of your nose so many times today I feel like a broken record.  My clothes are just as dirty as his are because he touches me all day with messy hands.  And I am loved.  Because he tells me so.  My life is a daily episode of PARENTING IN THE EXTREME!

So as I sat there with the psychiatrist I resisted medication.  I resisted it because I am not ready.  I resisted because I can try to be better mom, healthier cook, more involved... I resisted because he is 5 and I don't want a life of weird medication for him.  I resisted until she said "his brain is just not going to make the things it needs no matter how hard you try for him.  He will struggle.  He may do great or he may fail.  But his brain is missing some ability to regulate or provide and this is a way to help him."..... She assured me we are not going to just give up and medicate, we are going to work to resolve some concerns.  And she will work with us, PTC, school and that makes it better for me. 

I cried. 

So we came home with the most easy dose for me to control and the minimal amount possible.  I gave it to him through my tears.  I explained to him what was and what it should do.  He eagerly swallowed it.  Nearly 2 hours later, while sitting calmly with me and playing with sticks in the fire he said "Mom, I feel calm".... I cried some more. 

So tomorrow we venture on to school with this new "tool" in our resource box.  It is not the solvent for all our problems.  It is merely a tool. 

I can guarantee you, I will cry. 

Kindergarten FOR REAL

Espen stared Kindergarten FOR REAL!  After all the work we did this summer to try to level off his behavior we failed to find the solutions before school started.  So we keep working every day.  We have good times and bad and know that the teacher and staff at the school are helping and working with the therapist and me to find ways to make it better.  I know it is hard when she has 20 other kids to manage and I appreciate her efforts and compassion with my child. 

It is SO incredibly lonely at the house all day.  Every day for the last 5 years I have had one little boy to listen to and talk to.  I have spent countless hours playing and going places.  I have cleaned up and made messes with him.  He has been my helper and my shadow. 

It is now quiet.  The house is empty and quiet for 7 hours each day.  He gets home and needs some "down time" and I give it to him.  It is incredibly hard not knowing what my child does all day.  If he is kind and gentle or a wild buffalo.  It is sad not seeing his triumphs and amazing smile at the successes.  It is quiet not listening to the million questions and little boy chatter.  Honestly it sucks. 

It is harder yet because my child has not the ability to actually tell me what happened in his day.  I hear nothing about the whole day.  His recall is oddly not present.  I can get a few tidbits from the teacher before we leave the school but for the most part I do not get anything.  EXCEPT amazing stories.  Espen is quite a story teller and he concocts these amazing stories.  So I hear about grand adventures that I know are false but it is what he decides to share with me.  Rarely I get a few facts about his day but they come in the most bizarre ways that I am not sure.  It is a weird household!

Maybe for now I have to be satisfied with that.  Maybe he spends his whole day keeping it together and quiet that when he sees me he just must fall into the land of creative and entertain me with his imaginary adventures.  Maybe it is how he is.  Maybe just one day he will tell me something real about his day.  

For now I hug him like crazy when he lets me.  I play or sit or cuddle when he is ready.  And I am thankful for the last 5 years because it is how we got to this point.  But I really miss him......

No answers

Appointment after appointment and still I sit here with nothing. 

We are 2 weeks away from kindergarten and I spent all summer making calls, going to appointments and completing assessments.  We are now completing and autism screening and an anxiety assessment.  And set up to see the next doctor. 

My child is perfectly happy in the quiet, structured(ish) environment at home.  He rarely has accidents and can be completely managed.  Certainly we have our share of freak behaviors but generally he is calm and not overstimulated.  Take him anyplace different and he immediately gets into overdrive and turns quickly into some type of crazed child.  His behavior often results in weird things happening!

I spend energy and time being fearful of the next step in his little journey ~ kindergarten.  I am not sure it is the right step at the right time and yet I have no other answers.  I am concerned that I won't have the strength to keep calm and face each day with the energy needed to help him get through.  If it is a daily struggle, he will never feel calm enough to actually enjoy the experience of school.  And more then anything, I want him to have the joy of learning and making friends.... right now, I just have gut wrenching fear that it is all going to be to much and we will have a cloud of trouble over us. 

Yet I face each day with an optimistic smile and set about to make contact, follow through with our "sensory diet" at home and make each experience the best it can be given the circumstances.  It is all I can do.....

Grief

Last week I knew something had gone terribly wrong at the house across the street.  I knew.  It was a mothers knowledge that heard the sobbing, saw the tight hugs and the look of utter despair.  It was the "Texas" in me that saw the food being dropped off after the hugs and I knew something had happened that shook the family who has quietly lived across the street from us for 4 years.

As we played outside and loved on our son, I discovered she lost her 24 year old son.  He was there one day and horribly gone the next.  The sobbing and hugging brought Espen to ask many questions. 

We have known for some time that Espen lacks empathy and sympathy.  He does not have a real grasp for understanding pain or grief or hurt.  His high pain tolerance is partly to blame.  He can understand what pain feels like and just thinks everyone "feels" the way he does.  His brain doesn't connect with the understanding of grief.  We have been trying to explain and train him to understand these hard concepts that do not come naturally. 

It was a moment when we were all in the truck heading someplace that he saw a large group of people standing in front of the house across the street dressed nicely (heading to funeral) that he asked me why people feel sad when someone dies.  The smile on his face shocked me, yet I realized he simply was not understanding.  I tried to explain how mommy would be so sad if something happened to him and that when someone dies they are just in our memories and it makes people miss them.  He looked right at me and said "Mom, I just don't get it".  He looked out the window and that was the end of the discussion.  And not only did he admit he did not get it, he was done talking about it.  It has never been mentioned again.

But I think about it. 

I do not know if my child will ever understand death, pain, grief or sadness.  I do not know if he will understand empathy or sympathy.  The world is full of strange and terrible things that make us generally feel some emotion.  As well, there are many moments of utter bliss.  I only can hope that I handle these emotions appropriately and that he can see and feel me experience them.  His intuition and sense about mommy may be enough for now to help him garner a small bit of knowledge about these emotions.  No matter what the feeling, I wish someday he can feel it and understand it. 

Today however, I know about grief and a mothers loss.... and I hugged him to me. 

The six things to know about my son

There is not a parent manual.  To bad.  I could use one!  It would most likely not cover what I want to know about.

I want to know what to do next for my son.  I want to know when we can get a "break" in understanding behaviors and changes.  I want to know how to best advise the teachers and friends when something goes terribly wrong.  I want to know how we can explain to family and friends the odd things we deal with.  None of this will be in a manual. And oddly not many will have to deal with it so it will be hard to understand.  

Without a manual, we have decided to reach out to the next professional for some guidance and help.  We struggle along as best we can with the resources we have, the books I read, the therapy we have at home and at therapy gym until we reach that point when we know we need something else.  We don't search for medication but we search for help.  For a place that gets our child and can open a door for us to help him. 

Without a manual, these are six the things we manage to deal with.  These are the six things I am an expert at.  These are the six behaviors I understand and that are for our family "the norm".  These are the six things about my child I want you to understand.... And these are the six things we are seeking professional help with. 

My child is strongly and strangely sensory driven.  On a typical day he licks, smells, eats, touches, chews and listens to things I never dream of.  Things I never even pay attention to!  I have to say often "do not eat it if I didn't give it to you" or "we don't eat weird things we find" or "I am so sorry I do not hear or smell what you do" or "mom has old ears and they don't work like yours do, tell me what you hear".  We often just ignore it when he licks things.  We often carry noise reduction head phones for when places get loud.  We have gum so he can keep his mouth busy.  We accept that he needs to touch things to understand them and the place they have in the world.  Imagine school with a classroom of children who use different soaps or teachers who wear perfume.  Imagine the sounds from other rooms or the hallway (he can hear better and more acutely then we imagine).  Imagine the loud places like the gym and the lunchroom.  Imagine his curiosity with wanting to feel textures and children.  In order to make sense of his world, he has to feel it with his whole body.  I have allowed it and now he has to fit into what "society" thinks is normal behavior ~ and he can't lick, touch and smell everything all the time. 

My child never feels hungry.  We often have to bribe him to eat.  Not because he is picky.  He just never feels hungry and if you are not feeling it, it is really hard to put food in the mouth.  If my child doesn't eat TERRIBLE bad things may happen.  His little body will be all out of whack and he may not be in the best of control.  He throws his lunch away nearly every day, is so excited to be home he can not stop for a snack and fights the notion of dinner.  But will often wake hungry and recognize it (at 3am) and ask for a granola bar.  We always feed him.  Imagine a whole day with little nutrition and how that will impact a small child.   

My child is incredibly strong.  So strong he can do amazing and terrifying stunts.  His strength leads to ability to run at full speed for long periods of time.  His strength and lack of fear lead him to things he imagines to be safe.  His strength also often causes "accidents" to happen.  He won't recognize how strong he is when he bumps or jumps or crashes into someone at full speed.  He is drawn to play with bigger children who have the same ability he has.  This poses its own challenges.  His strength leads us to interesting activities and sports that few families do with smaller children.  His ability lets us stay outside participating in things much longer then others are able to.

My child rarely understands pain.  He can fall off a moving bike and get up, give me a thumbs up and keep riding.  He can fall out of a tree or off the top of the playground and never even stop.  He can have the wind knocked out of himself and just stand up and keep going.  It is amazing and terrible.  Because he rarely feels pain he has an incredibly hard time understanding the pain your child feels.  He does not grasp that his out of balance wildly erratic movements can inflict pain on others and why they cry and stop playing.  He can not grasp the notion of pain.  It is a giant problem we address every day.

My child is anxious about changes and nervous about patterns being out of order.  I am not a very structured person.  I decide to do things randomly.  Yet my home is pretty orderly.  It is a messy chaos.  Should I decide to put on a new comforter or rearrange the toy bins my child has worry written all over him.  If you close the shower door "wrong" he has to change it.  If you don't put the car in the driveway in the middle he freaks out.  If you drive to the school a different route it throws him off.  Imagine this child now in a public school where there is structure but he can't understand the patterns or predict what happens or where things go.  His anxiety and nervousness are buzzing in him and he is chewing his clothes, clinging, grumping around and sleeping with us again.  Imagine school with so many changes right now.  From a few hours to a full day, to changing bulletin boards and transition times between things.  Imagine if things are not exactly where he left them from time to time. 

My child has little impulse control.  It is not something he understands or grasps.  He darts into the street, he climbs tall places, he swims to deep depths, he takes things that don't belong to him, he says things he creatively made up, he touches things randomly.  His impulse control is grossly under developed.  Because I have one child and we are home together, I can manage those impulses.  Imagine him at school when he has to manage those impulses on his own.  Or he doesn't.  He will take it if he sees it, touch it if he can, climb it, run without stopping.  The worst part is that because he lacks impulse control, he will not understand that he has behaved irrationally or acted wrong or done something he should not have.  He won't grasp that.  He will not understand the consequence because he didn't' think his behavior was bad or wrong and he will do it again and again.  He has no control over the impulses.  For example, I must say 500 times a day to get out of the street and the reason why it is a problem it go in the street. I may take a bike away for the afternoon for riding in the street only to turn around and see him in the street on a different bike and then I have to explain why we do not go in the street at all, not just on a particular bike.  It happens daily.  The same conversation. 


Our lives are strangely challenging.  We find a place to be "normal" and we roll with it.  We cry and laugh.  We get dirty.  We jump and crash.  We eat at 3 in the morning.  We party like rock stars and we snuggle in the quiet cubby.  We pray every day that we are graced with the ability to manage the next day and we ask forgiveness when we can't.  We find friends we hope can understand and accept us and we understand when they can't.  We understand the need to ask for help.  We let this little boy get to the place he is supposed to be at the speed he is meant to get there and we help him along the way.  We try to make the best, most sound decisions for his benefit.  We love him and each other because at the end of the day it is what we can hold on to.

These six things are what make my beautiful child who he is.