Just like every other child

Today I was reminded of something super important to me.  That my child be just like every other child. 

For his first years I tried every way imaginable to set up play dates, join classes and participate in every opportunity possible so that he could be exposed to situations and experiences just like everyone else.  There was no simple or easy solution to get him involved. 

It was hard work and dedication.  It was countless excuses and rushed exits.  It was tears in the car before we could drive away hurt, shamed or angered.  I felt different and very alone.  I kept trying.  I knew something was not right but the pediatrician left me feeling that I was just overly worried, that all the crazy was not so bad and that he was just a little boy.  REALLY.  Then why did I clean so much poop, have more run away stories than most, call poison control so often the number is a saved contact and never really have a good experience with play or social interactions.  I kept trying because I wanted my child to have experiences just as equally as everyone else did. 

It is hard to sign up knowing your child will wiggle, run, jump, talk, run (yes he is a runner), be unfocused, hit, hide or scream like he is on fire.  It is hard to keep going to class after class and see the stares, never have a mom chat with me, never have a friend for Espen and know you are THAT MOM.  Hard to keep trying and going when it seems like it is more often a fail then a success. 

I sat for countless swim lessons watching my child just randomly jump in the water.  A life guard had to sit next to him to keep him from doing it ~ for a long time.  Hard to sign up when I feared they would tell me we just were to much for any of the teachers.  Hard to sign up when I was exhausted and frazzled and just wanted to cry.  Yet I went and paid and they helped him learn to swim.  and even when I cried they showed compassion and they let us keep coming.  We adjusted some things to make it better for Espen and he got it!   

I sat for numerous learn to ice skate lessons that became hockey lessons.  I watched from the bleachers after specifically telling them he was sensitive to noise, the melt down start.  I watched them loose him one day and knew he was hiding under the players bench.  I watched generally alone until his tears about not wanting to go made me just stop. 

Beyond that I have tried gymnastics, roller skating and Gymboree.  We have done swim lessons at the public pools in the summer just to interact and have had disastrous consequences.  When I tell you my child can swim and he will not have patience blowing bubbles, listen to me!  I have witnessed my child get into deep water and no one notice him (I always wear a swim suit and I always watch).  I have done it without a mom to visit with.  We have gone to summer day camps at the Omaha Zoo and Fontenelle Forest.  We have tried play dates out the wazoo with strangers and familiar faces in all sorts of settings.  I have done it over and over for 4 years.  Sometimes we are successful and sometimes we fail horribly. 

But the opportunity for these experiences are opportunities every single child should have.  Every single child should have the chance to try a lesson without judgment.  So I keep trying for my child.  We are signed up for soccer this spring.  The first organized sport.  Succeed or fail we will be there.  My son can tell you.... we never quit... we try.  And try we must!

So I tell everyone who wants to listen to me about Sensory Processing Disorder.  I tell anyone who cares to stop that my child is sensitive to sound or motion or music or smell (just depends on day).  I tell them so that perhaps my child can not be judged so harshly when he melts down or has a problem.  I tell them so they can have compassion.  I tell them so that we can experience things.   I may not make a difference but then again, I may!  I want my child to have the same experiences! 

So my message is to keep trying moms of sensory kids!  Keep putting your little ones in the lesson, the play date, the experience because just every so often there will be that one experience that they get... and it will be amazing!

Terrible, Horrible, No Good, Very Bad Day

Almost 5 years ago my son was born.  In the last 5 years I have versed myself in things I never thought I would have any need to know about.  Certainly I had heard about speech, physical and occupational therapy.  I had even done some class work with understanding them when I was working on my bachelors.  But I did not have a clue that I would need to understand what it was to be able to help my son in the best way possible.  And still even with all my knowledge and patience and education, I can't figure out how to make it consistent.....

I take my child to occupational therapy once or twice a week (depending on the schedule).  I have sat and watched countless times.  I am like a spy at the circus!  He does the most amazing and often hard tasks with guidance.  Sometimes those tasks are not climbing and jumping but sitting still and focused!  He never complains about going and loves being there.  He meets great kids and has an acceptance of all abilities and ages. 

We have tried aqua occupational therapy.  It is hard work and it is good for him. He wears 8 pound weights, flipper fins and finds small objects in the pool while keeping his wet towel on his shoulders like a cape  ~ it is hard work.  The hardest part is his desire to just swim and play.  I sit and watch.  He gets worn out.  The heavy lifting, the fine motor the listening all rolled into the greatest place on earth ~ the pool!  But when we leave, he is calmer and more ready to accept a message.

Espen takes a yoga class on the weekend right now.  He has a terribly hard time with body awareness and we have found that it seriously helps.  It is calming and fun for him yet he is learning about his body and regulation.  I have watched a couple and try not to be distracting.  He is also interacting with children his age, working together and following instructions.   We have helpful kid friendly yoga cards at home we can do it here too but he gets it with the teacher. 

We just finished 8 visits with the behavioral therapist.  I gave it a shot and tried.  We got some good help but some of it was not productive with occupational therapy.  I have been doing this a long time it seems and I know when we need to move on.  I can read the book, no need to keep my child in a 5x5 room with 4 adults, getting to hot, smelling funny smells doing his best to sit still for even 5 minutes.  It was a set up for bad behavior because his senses were all wacky, not because he was bad.  But I learned some tricks that I can use and we try.  Oddly during that time, we somehow managed to get him out of our bed.  We moved his bed time from 7:45pm until 8:30pm and we feed him an entire serving of either oatmeal or cream of wheat at about 8pm.  He is in his bed all night with few exceptions.  Most importantly I started reading Is It Sensory or Is It Behavior, a book not recommended by the behavior therapist but the occupational therapist.  It is super helpful to me in understanding a bad behavior or a sensory seeking behavior. 

And yet even with all the knowledge and resources I have and have learned it is still hard to have days like yesterday.  He was like a roller coaster of crazy.  He was moving at lightening speed.  Doing silly yet super dangerous things with no concern.  Never once stopping to actually listen to me.  He hardly ate (which we all know makes us crazed).  He got super hot in the clothes he was in yet pitched a fit when I forced him to change.  It made me crazy which didn't help anything.  The other side of the behavior coin was super great.  He was funny and happy and compliant.  By the end of the day we had all reached our breaking point and I ended up in tears, Espen ended up in tears and daddy took a time out in the garage. 

Bed time story included Alexander and the Terrible, Horrible, No Good, Very Bad Day.  And instead of re-hashing all the bad things I simply left him with a kiss and the promise of a new day tomorrow.  It is all I can do.  What's done is done.  But it will be a new day tomorrow.  Full of new things and better moods.  A chance to just try.  In a way, I wished him enough.

What made yesterday different... He had some sugary snacks.  The moon was full.  He was actually sweaty and hot in his body.  We stayed home in an unstructured environment all day.  I encouraged solo play so I could do yard work.  The wind was blowing like crazy causing the wind chimes I love to clash together all day (and he was outside in it).  He was up late the night before and was tired.  He has had sensitive skin for a week now.  He is constipated beyond belief.  He was hungry.  Mommy was gone Friday night at work. 

We have no idea what made the day to be totally off.  We just know it was a rough ride and we all needed a break.  It is days like that when Doug looks at me and says "he will always be an only child because we do not have the energy reserves to handle any more"... and I wonder if he is right.