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! 

5 Simple Play Date Rules

For all children play dates are a milestone in socialization.  For little ones, play dates are exciting and terrifying.  For a child like mine with sensory processing disorder, a play date is a wild world of stimulation and exposure.  I want him to have the same experiences as everyone and not be isolated so I try and try!   We have generally had children to our house because I can best manage situations.  I recognize however the need to branch out. 

There are tons of good reads about hosting and managing play dates for sensory children (and all children).  I have read it all so that I could be best prepared for my son's behaviors! 

I have not left him alone yet for a date because I think he still needs mom to be close by just in case.  So we were invited to a play date.  It was exciting!  Imagine my delight that he played with the other children with no screaming, fighting, pushing, shoving, tattling or meltdowns.  Then imagine my dismay, surprise and embarrassment when he decided to put on some clothes from the little boys dresser.  He then used the toilet (YEA he used the toilet alone ~ this alone is a great achievement!) and brushed his teeth with one of the toothbrushes sitting there.  Oh my I thought I would just crawl under the couch from embarrassment. 

For my child this seemed like a reasonable thing to do.  I talked to him at length.  I described a situation in which some friends came to our house and borrowed his toothbrush, lovey and most favorite hoodie.  His response was that if the kids needed to use his things he would share them because sharing is nice.  Indeed it is.  Perhaps we should all just loosen up and the world would be better. 

After a good cry, I thought about what is most important for him to remember RIGHT NOW for our next encounter.  I thought of 4 simple things to remind him of when we go to another person's home. 
#1  Do not take your own clothes off.  No exceptions to this rule ever.
#2  If you need to use the restroom, let mommy know and never touch anything except the toilet and the sink.
#3  Do not get anything out that was not already out or go into a room that was closed.
#4  Share with everyone. 
#5  Always say please and thank you. 

Maybe in a few weeks we will try again.  Maybe he will not use someone's tooth brush!  Maybe we will be invited back!  Or maybe we will just have kids over to our house for awhile longer so that we can understand our bodies, boundaries and impulse control. 

Wild Winter fun....

Winter... Is it killing you?  We have been finding cool things to do... here are a few of the ones we love!

On those cold days, boil water, put it in a mug and let your child watch (or throw) it outside.  Be sure to throw ist up and away from your body.  It is amazing fun!

Put food color and water in a balloon (water balloon) and let sit outside until frozen solid.  Makes amazing colored ice.  I let Espen put the big ice block in the shower and play until he is finished melting it down. 

We have brought snow inside in buckets into the tub. (I did it long before the cool parents got on the Today show doing it!).  It is cold and fun.  We put food coloring / water in spray bottles and let him color it.  We put the trucks and cars in it.  Then when he gets cold we run warm water in it to watch it all melt! 

In our house we don't worry about eating the freshly fallen snow.... we just do it. 

Sprinkle Jell-O powder onto freshly fallen snow and let kids eat it, play in it and have fun!

We made fresh ice cream with fresh snow.  I let Espen collect it in a bowl then we added milk, sugar & a bit of vanilla stirring while we added it, until it was creamy!  There are lots of recipes on line but a giant amount of snow was needed.  I winged it until it looked tasty.  He loved it!

Snow floats!  Who doesn't love Coke and fresh snow!  An instant slushy treat! 

Blow a GIANT trash bag up with air and tie it off.  Pop it around like a balloon.  Sit on it.  Kick it.  Play catch with it.  When it gets broken, toss it in the trash!

He has been playing in a giant leaf bag.  It makes a good hiding hold, coloring page and snuggle bag.

We build forts.  Small ones, big ones.  From cardboard, blankets, chair cushions.  The building is often quickly followed by the crashing it down but it is always good for a laugh or two! 

The warm weather can not get here soon enough.... but in the mean time, we will just manage to find things to have fun with during the winter months!

Hopes

Happy New Year!  Every year it is a relief to see January 1.  We all feel it.  It is a fresh start, a new beginning.  We wait for this time to try new things, set new goals or imagine great achievements yet to come.  We try so hard for a few days, weeks or even sometimes months to just fall back to the old things that work or are comfortable. 

My beautiful son will be turning 5 soon.  He is a gift.  I am thankful every day for him.  I am thankful for his smile and laughter and hugs.  I am thankful for how fast he moves and thinks.  I am even thankful for the strange and wonderful world of sensory processing.  It is a look at life and everything in it, with new eyes, sometimes through crazy glasses.  I am thankful for the challenges that go beyond being a parent.  Our lives are strangely different then so many others. 

There are not enough words in the dictionary to describe the internal conflict that sometimes comes along with having a son like mine.  Confusion and regret are often so strong you can feel them in the room like old friends.  Longing for a regular life, full of normal family activities for Espen and for us all.  Wishing we didn't have an escape plan every time we went some where or a change of underpants in my bag (and lately, an entire outfit, even shoes).  Sad that our lives are imperfectly perfect.  It is hard to make friends, hard to keep friends and hard for people to understand.   The pain of telling people "I'm sorry we can't be there, do that, go".  I regret all the times I thought I could do something and then couldn't at the last minute. 

 

We get to the point of just closing ourselves off because we can control our surroundings better and make things less stressful.  It is easier to not explain or apologize. So as the year started I had hoped, like everyone, for a fresh start on expanding our comfort zones to include friends and a support system so that we could face new challenges.  And just 4 days into it, I am drawn into the most comfortable behavior, when the freak out happens, mommy makes it better.  We do things we know we can handle, go places we know we will succeed, stay home when the stress gets intolerable.  And I make apologies when we miss things. 

The hardest part is the feeling of isolation.  The feeling that we do this on an island and it is so hard for people to understand.  Loved ones may have an idea but not the whole picture of our lives.  We don't ask for help.  We are not just a normal family.  We have some special needs.  We don't need to be told we are just normal and that we are putting to much pressure on ourselves.  We are trying.  Every day we try something.  Imagine the pain and discomfort from being over stimulated and that leads to fear and panic, which can lead to tears or running or other "non acceptable" behaviors.  As parents we have to handle that in every situation.  And it is not getting any easier. 

 

It is hard to manage on an island.  I hope people don't give up on us.  We need the support even if we seem like we don't.  We need the attempts of friendships even if we are hard to understand.  We need an occasional person to listen to our concerns and fears without passing judgment.  We need people to see past the messy hair, dirty clothes and wild running behaviors to our hearts that are full of love and hope and honesty.  We need patience. 

 

We will make it through this year.  We always do... it may not be what I imagined it to be three days ago, but it will be as it should be and we will be happy.  And maybe, just maybe, we will make some new friends and try some fantastic activities and go to wonderful places!