In our house

The strangest things happen in our house.  In our house we ride skateboards and scooters in the hall.  We eat dinner with the ipad.  We take numerous baths or showers a day.  We play outside in all types of weather.  We eat random things.  We rarely wear shoes.  We climb it, ride it, spin it, jump it. 

In our house strangers are invited to jump on the trampoline.  We smell them.  We often wear the same costume or shirt or item multiple days in a row.  We wear helmets of all kinds whenever we please.  We dance silly in our underwear and laugh like crazy when we are muddy.  We finger paint the drive way and chalk the side of the house.  We eat crayons and never save art work. 


In our house we jump on and off of beds.  We play in forts and eat in the bathtub.  We read books about all kinds of subjects.  We use big words and never have secrets only surprises.  We talk to everyone.  Sometimes we scream.  We have accidents.  We wear eye patches and head phones.  We have weighted pads and body bags.  We watch tv upside down.  We do yoga.

In our house we have a swing in the dining room, a desk in the living room, a fort in the bedroom and a flashlight in the bathroom.  We watch the coffee drip while laying on the counter.  We draw on the windows or on our arms.  We ride down the railing instead of using the stairs.  We drink out of the faucet.  We throw toilet paper. 

In our house it is ok to cry.  We take time outs because sometimes we need them.  We laugh out loud and never in shame.  We ask lots of questions.  We eat cold hotdogs and drink warm milk.  We bury ourselves completely in sand.  We always wear underwear to school. 

In our house we have every ride on we can imagine.  We have soft blankets and fuzzy bears.  We have black out shades.  We have swim trunks and snow pants.  We eat soup for breakfast and cream of wheat for dinner.  We meltdown.  We plant things we can eat and play in the dirt.  We are never afraid and we never quit.  We wear pants with holes in the leg.  We paint our fingers and toes bright shiny pink.

In our house we often break things.  We snuggle.  We run.  We feel.  We smell and we see.  We taste as much as we can.  In our house we use all of our senses.  We use them every day.  All of them.  Quick as we can!

In our house we are sensory friendly and know what we know to help us all grow.  In our house we have SPD.  In our house we are free to just be. 

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. 

If you are just joining me....

Today I took my baby to kindergarten roundup.  I can not believe he is going to be 5 and going to kindergarten.  I am terrified that he will not do well in kindergarten.  I pull out all the stops and get him the help and resources he needs but every day is like a shot in the bucket. 

Sensory processing disorder touches our lives.  It in fact is the way we live.  How did we get here... when Espen turned 3 we saw the pediatrician we had been seeing since he turned one and I had a list of odd things and behaviors.  I felt (knew) like he was not like other kids.  I had been telling her for 2 years already and I was made to feel like I was over reacting.  UM NO.  I left that appoi

ntment in tears with a little boy who was as cute as a button but could not handle simple tasks, was failing preschool, who ate everything, who could not go to the grocery store with me and who preferred to be naked and covered in mud no matter what the season.  I was out of my wits with concerns and questions and problems. 

I stumbled into Pediatric Therapy Center, literally walked in crying.  I was so desperate for some help for my little boy and I had no place to turn.  The kindest person helped me figure out how to get an appointment and we were in to see them for an assessment.  And suddenly SOMEONE listened to me.  Someone who did not tell me he was just being a boy.  He whipped around in that gym as fast as his little legs could carry him and it was ok.  It was here that we learned about sensory processing disorder.  We started going to PTC 3 times a week.  Then I read all the information I could find and asked millions of questions.  I sat quietly in the therapy gym watching what they did with my child so we could do it at home.  I invested hundreds into sensory equipment for home.  I try everything. 

My child has sensory processing disorder.  He looks just like every other little boy his age.  The information his brain receives from all his senses is not organized or processed into the right response.  He does not feel pain very well.  He smells things I never detect.  He hears better than I ever could.  The slightest touch of clothing or hands bother him.  He eats weird things.  He crashes into things with reckless abandon because for him it feels great.  He does not get dizzy.  He struggles to hold a pencil.  The list can go on.  Basically he is constantly seeking making him appear wild, unruly, naughty, unfocused.  His brain is wired differently and he needs help learning how to process the information he is getting from all those sensations.  Thankfully we have found a therapy center we love. 

The changes in Espen over the last year have been amazing.  Sitting and watching it looks like fantastic play.  He gets to use all kinds of amazing equipment and play circus like games.  He draws and writes and then jumps and swings.  It is great fun and he never complains about going.  It is occupational therapy and it has helped my child be able to hold his spoon and feed himself, put his shoes on and tie them, write his name and other letters and numbers.  He gains an understanding of hard and soft touches and listening to his body to know fast and slow. 

We do similar activities at home. We have a swing and scooter board and trampolines.  He has more ride on toys than a toy store.  He takes a bath when he wants to not just at night.  We have climbing things inside and outside.  We build and jump and crash.  He swims as often as we can both with me and at Swimtastic where he has taken lessons for two years.  They are amazing and help him be social and appropriate and in the water safely.  He takes a yoga class taught by an occupational therapist so he can get a greater understanding of his body and breathing.  He is in a specialized preschool so he can get some boost up for next year. 

I surround Espen with opportunities and try to be just like every other family.  I expose him and sometimes we fail and sometimes we find something he likes.  I apologize when necessary and I cry when overwhelmed.  Our family is like one little sensory road show!  I spend time and money doing the things that work for my child.  I listen and I learn so that I can help Espen.

So as my child approaches an age milestone I am both happy and terrified.  I am not sure how he will manage in kindergarten.  I am terrified that it will be overwhelming and we will find him struggling along.  But I am certain we will find the tools we need to help and we will wildly face a new day learning how to be one sensational kid! 

Disappearing child

My son is so stinking fast.  We came home, parked the car, I reached behind the seat for my purse & swim bag and he jumped out AND WAS GONE.  I thought he had headed to the front door.  Nope.  I put my things down on the porch (I never went in the house ~ we have done this before) and started calling his name.  GONE.  No answer.  I went back to car, looked in it and around it.  Nothing.  I looked in and around the truck.  NOTHING.  I ran back to front door screaming his name.  HE WAS GONE.  I had phone in my hand about to call for help as I was rushing back to the back yard.  The neighbor called my name and simply said "he is in our house".  WHAT THE HELL.

Seems that he had seen them pull in as we were and he rushed over to say hello before I even realized what direction he had gone and he went inside uninvited.  HOLY CRAP.  I was furious and relieved.  And freaked out AGAIN.  How many times does this have to happen to one mom.  The saying "God only gives you what you can handle" is a bunch of crap right now.  I have handled it and taken it and for crying out loud I need a freaking break.  (yes yes I am certain I will hear about that comment). 

My son just as fast as you can snap disappeared again today.  He was there, talking to me and then GONE.  This is not the first time.  Granted it has not happened in some time but it has happened.  I can recall each and every time.  These are the most frightening moments of my life.  Moments of sheer panic and terror.  Moments when my mind can not think straight all I want to know is WHERE IS MY CHILD.  Moments that happen often in my life.   Today I told him he better go inside our house before I spank him in front of the neighbors.  He looked at me like he had done NOTHING WRONG and said he wanted to go there because they have brothers..... WHAT THE HELL.... I honestly don't give a crap if they have brothers or flying monkeys...

So he sat in time out and I cried.  He had no idea why I was upset.  He lacks boundary control.  He lacks impulse control.  He has no sense of fear.  He has no stranger danger.  He is the friendliest kid with a warm caring heart.  He has a curious mind and is strong willed and grossly desires independence to try and do things.  He has no idea how freaked out I am.  How in the freaking world can I teach him to never do that.  To never go anyplace without telling me.  To not go inside homes unless I am at least aware of it.  I can I teach my son to have an impulse to think it is not safe when he doesn't understand what safe is? 

Then when I was cried out I just wanted to hug the little monster and he HATES me... hates me for putting him in time out and for crying and yelling.  Hates me for not letting him go to the neighbors.   He got his map and told me he was moving and showed me where on the map.  He got all his toys together and was packing his little backpack.  I asked him why he wanted to move and his simple answer was "because I hate you mommy".... Ah really... that is the best answer... fine.. hate me.  I am here to be your mom not your friend and my job is to keep you safe and loved and fed and loved and warm and loved and growing and loved. 

I am a good mom.  I was right there.  I was not on my phone or texting.  I was gathering our things up to go in the house.  I was right there with him.  I was listening and talking with him, not to him.  I was praising and encouraging.  I was agreeing to play and be outside.  And then he was gone.  I am thankful for the neighbors certainly.  But furious with my son and myself and with everything ~ because I was freaked out.  My tears can not make the whole mess undone.  I am not sure my nerves can take much more.

I apologized for crying and yelling at him.  We talked to him about why he can not run off.  Why he ALWAYS has to ask before he goes anywhere.  We have done this before, several times.  If it is a test, I fail. 

So as I go to sleep tonight I am upset that my son ran off and disappeared.  I am upset that he knows how to speak the hurtful words he spoke.  I wonder what I could do differently.  Honestly I have no freaking ideas.  I try it all.  I seek help.  I engage and entertain.  I talk and listen non stop. I try and try.  I allow some small margins of independence in other ways and then BLAM this happens and I feel like I want to yank all that away (even when it is not related).  I am home and this happens to me...  I just want to go in his room and hold him.... but to wake him means no sleep... so I just have to whisper "I love you....always".... and I am mad that I keep having these crap experiences.  Mad that weird just keeps getting in our home.  Mad that I am not sure how much more I can take..... Mad because our house is a fortress, my life a security stop and still I feel like we are not safe....

Locker room

Last week at one of our many trips to the pool I had a situation arise that has had me thinking for a week.  Espen is 4.  There are very few places I will allow him to use the restroom without me being at least in the same vicinity. Most of the time I make him use the ladies room and allow him in the stall unassisted but I am right there.  Sure you may be thinking GEESH WOMAN GIVE HIM SOME ROOM.  Let me assure you I know my child.  

Until recently, my child, played in everything - water in sink, toilet, toilet paper, soap, towels.  He locks stalls and crawls under.  He has totally undressed and come out stark naked.  Heaven forbid you (a total stranger) use a stall next to him because he will just crawl in there and chat with you - all of this has happened to me.  Even when we are with Doug he uses the ladies room because urinals are a whole different set of germs and questions and discussions (with dad and strangers).  Outhouses are my enemy if you can imagine why...

When I take him to the pool for lessons or to swim with him I do not allow him in the locker room alone.  Swim lessons we are the only ones there so I can use the boy locker room for training grounds.  I try to let him in there alone and usually I just end up with him.  He plays and does not think things through very well. But I let him try and we are in a safe place that I can go into.  The public pool however is a whole different adventure!  For starters, it has two exits so there is no chance I will let him in the boy locker room alone.  I will never find him!  He is young and cute and lacks stranger danger (worst nightmare).  He is curious about how things work and it would not surprise me if he jammed a roll of toilet paper into the sink to stop it up just because he could.  I could list 300 other reasons why I will not let him go and change alone. 

Let me remind you HE IS FOUR. 

At the pool last week, we swam together.  I swim and play with him.  We both have to change to come home being it is the artic here.  Into the girls locker room we go as we do each time we go to the pool.  I keep it FAST and we change and get out.  On this particular day there was an aqua class about to happen so women were getting ready and a mom (who had not swam) with 4/5 year old daughter whom she was helping to change back to street clothes. 

As I was rushing to get dressed and help Espen, all the ladies just ignored us because I work really hard at keeping his attention on me so he is less curious about anyone else.  It is exhausting.  But the mom with the little girl made very loud comments to her daughter to keep covered up a boy was watching, that it was no place for a boy, that boys belong with the men... to the point of annoying and frustrating me.  My son could not even see the little girl.  So I rushed us out of there, wet hair and shoes in hand that I put on in the lobby thinking the whole time about it.  (Three days later I have a terrible head cold)!

Would that same mom send her daughter into the ladies locker room to change alone (didn't seem so)?  Would she send her 4/5 year old son into the men's locker room to change?  I would totally use a family locker room if one were available.  There is a restroom near by but it is for the gym area as well and seems odd to take a wet child into it.  Where and what exactly should I do with my small little boy who is not able to go alone?

It was super frustrating.  I know there will come a day when I will have to send him in alone and pray that he will not do anything ridiculous.  That day is pretty far off still.  I know my son.  Please excuse us and don't judge me when my son comes into a ladies restroom with me. I am a mom who knows he is only 4 and just not ready for it.  I do my absolute best to keep him focused and we rush in and out.  It is the best I can do.  I apologize if a little boy makes you uncomfortable.  He could care less about body parts.  He is more curious about a million other things (like the locks, getting into the lockers, putting on shoes that are laying there and pestering me 400 times if I have any money for the candy machine).  I can assure you however, that if you draw attention to him, he will look and make some comments in your direction.  I just don't know about people sometimes......

Today my kid ran away

Today my kid ran away.  Oh yes this happened.   Our day was characterized by explosive outbursts, super great behavior followed by odd statements ~ repeated all day.  (Clearly we need more therapy and structure).  At some point, he decided he was going to leave.  He announced he was running away.  He came and told me he was going to run.  I never thought he was telling the truth.  Nor did I stop to really listen to what he was saying because I was so caught up in how horrible the day was.  How I look forward to a day off with Doug and Espen and BLAM it never goes smoothly. 

But he put on his socks and shoes, coat and a hat and found an open door and took off.  Thankfully Doug was not far behind him.  I started to cry.  Sank down to my knees and pray.  How can he be 4 years old and decide he is having a bad day and run off.  How can I be so dumb as to leave a door unlocked.  How can I have screwed up so badly that my beautiful 4 year old decides to run away.  How are we going to make this right and not have this repeat itself every weekend.  UGH.  Can't we just have ONE day ~ one regular day.  One day to know what an average family does and experiences.  Just that one day.....

I followed in the car when I saw them get to the top of the hill and turn the corner.  By the time I caught up to them they were nearly a half mile away.  He was running.  By running away I guess he really meant RUNNING. 

Espen in left, on a sidewalk.  RUNNING.

I brought them home while I was still crying.  He wondered why I was crying.  The thing is my son did not think it was bizarre.  He said he needed some exercise and fresh air.  He did not do this with a bad thought to it.  He was happy.  I was not. 

Yes today my son ran away.  What can possibly happen tomorrow?

There are some crazy fantastic things that happened with this whole frustrating moment.
1. He put on his socks, shoes, coat and hat by himself.
2. He ran.  He got some exercise in the cold fresh air.
3. He drew me a picture of the event after ward... complete with himself on a sidewalk, and when he messed up he used an eraser.  This is a HUGE accomplishment... my son is beginning to draw
random things that he can visualize. 
4. We know we need some help... we just don't know where in the hell to start!