Perfect Trampoline

Today I took Espen to an indoor trampoline place.  We got the whole package.... an hour of jumping, a laser maze trip and a rock wall challenge.

Indoor trampoline is loud.  It is dark with lights flashing and laser designs on the walls and trampolines.  There are children and adults all over happily bouncing.

It used to drive me NUTS taking him to this (or similar) places.  There were times I paid and we got in and he could not handle it.  Sometimes I lost money, sometimes they refunded me.  It drove me crazy how he jumped and ran about chasing the lights and focusing on things no other child was focused on.  I was grouchy when he "needed a break" because he was not really bouncing ~ why would he need a break!?  It would drive me crazy that he was not "doing it right".

What is RIGHT?

I had to let all that go.  He does it the way that feels good to him.  And it is OK that sometimes we don't make it.

Today he jumped and ran about wildly.  And I stayed in the same place and jumped, visited with other moms.  He danced ~ wildly and with careless happy abandon.  He chased the laser lights (tried to catch them over and over).  He interacted with me and knew I was where he had left me.  The other 50 or so people there were nearly invisible to him ~ he never interacted one bit with anyone else.  Strangely.  He was happy and found the way to bounce that pleased him.  He took breaks when he needed to and it was all just fine.

What is fascinating is that he can make adjustments to himself and his surroundings to "survive". He wanted to go jump today and knew it was going to be busy.  He has a super set of coping skills.  It is amazing to watch him.  He really pulls himself inside and does not take any heed of anyone else or he can't and he has to leave.

It has taken 6 years to get to this spot where I can be OK with whatever happens.  That is the hard part....  putting aside my expectations on what is RIGHT and the way we are supposed to behave.  To just let the moment happen as it needs to and give my child the opportunity to try and be ok when it may not work.  To support his needs as they come.  This is how he has the ability to manage the situation... because I have given him the space and opportunity but more importantly, because I have learned to be a different mom and put the high expectation for perfection aside.  The most beautiful thing is just having these moments with this amazing little boy.  And our times are absolutely amazing.

Play

Child centered play... Excuse me... Let me tell those of you who may not know about it WHAT it is...  In the most basic way it is allowing the child for a pre-set amount of time (10-20 minutes), to lead play, dialog and emotion with nothing but positive over the top praise from adult (caregiver).  There will be absolutely no suggestion or questions from the adult.  No guidance or direction from the adult. The child is in charge of the play.  The adult can positively praise, and expertly encourage (that is an amazing track, I love the way you put the blue one there).  The purpose is to immensely praise the child so that he seeks this positive interaction in hopes of curtailing negative behaviors.

It is crap.

In our house that crap does not work.

Here is how we played today.  We did shrinky dinks (remember those... they are cool).  He decided on his pattern and I traced it for him and cut it out then he was positively encouraged and colored it however he wanted.  We did 3 of them.  I praised.  We baked them.  They are cool.  And I encouraged, praised and agreed with him.

We played OUTSIDE.  It was 7 degrees outside with a blustery wind.  We played outside for nearly 3 stinking hours.  He wanted an igloo ~ I built one.  He wanted to sled ~ we sledded.  He wanted to throw snowballs ~ I nailed him.  He wanted to play tag ~ ok, I played tag.  I realized as we were playing tag how exhausted I was.  But play on.  He LOVES to be outside and I tolerate it as long as humanly possible ~ keeping a happy and encouraging disposition about me.

We played Legos.  He had a pile on a tile and told me I could only build a car using what he gave me and then when I was done, we would have a demolition fight with our cars.  So I built an amazing car out of crap legos.  All the while listening to his banter and chatter.  Never interjecting or discouraging.  Not offering any criticisms or suggestions.  I interact with him exactly as he wants me to.  And then it was demolished and I knew he loved it.

Each activity is child centered.  He has my undivided attention.  He is an only child.  It is not rational to think giving him these moments of total positive attention will eliminate the behavior meltdowns.  Playing this way does not teach him the give and take of relationships, the communication that needs to transpire when one interacts with another.  And this type of interaction he is REALLY good at!

The reality of it is that I play with him like this all the time.  I am really good at it.  It is easy to praise and love my child and it is much easier to play his way than to try to interject and get him to play my way or by the rules.  Because in the child centered way, he makes the rules and can change the rules ~ as long as he is acting appropriately I go along with his rules.

It is just crap I tell you... Not because I don't love playing with my child.  But child centered play will not help with the behavior meltdowns.  He melts down when his medication wears out.  He melts down when he is overwhelmed by some sensory stimulation.  He melts down when he is 6 and doesn't get HIS WAY.  I can look in his eye and know when we are reaching that point and no amount of child centered play will stop it.

Theoretically and in a clinical setting this type of play may work... for us.. in this house... we just play and mommy gives him all the praise he can handle.  And when the melt down happens we roll with it... It is not happening because he is seeking attention from me.

the day you were born

Since 1996, we have had a fancy tradition of putting a tiny framed photo on the tree each year.  When Espen was born, I started putting 2 on the tree; one of just him and one of our family.  These are not professional photos, but pictures of us just living as we do!  This year, Espen was helping and looking at all the photos.  He came across one that he paused a long time on ~ the day he was born.  Since he didn't say much, just hung it on the tree I did not say anything.  But I printed it for him.

We picked up that one photo and he held it for a long time.  His comments started cracking me up.... "Mom, you are wearing the same hoodie today and Dad has that same shirt".  "Why are you both crying and why is Dad so shiny?".  Then he got serious....

That he is adopted is not a secret.  We have lots of books we read at night about adoption and the special wish we had as parents.  We talk often about adoption and we celebrate special days.

So he had questions about the day he was born.  Most specifically if he came from my tummy.  No I explained, he was born from a super amazing woman's tummy and she is his birth mom, her name is Tia and she was brave and loved him so much that she wanted him to be part of our family.  To which he started chanting TIA TIA TIA oh MAMMA MIA... (yea he is a little boy who rhymes!).  I told him this picture was just moments after he was born and that I had always been his mom.  On the day he was born, our wishes were finally answered ~ and we are so lucky to have each other. Holding that picture he finally said mom "It's a good thing we have each other I love you"... Uh Huh... I had to hide my tears... he is a smart and bright little man.  Then he said since I have that hoodie, Dad has that shirt and he has that blue hat we should all dress like this and take a new picture.  HAHAHA

I am certain as he gets older he will have more questions and I will have answers.  It is just a moment in the day.

Continuing on our Journey....

The struggles and joys are real.  Really real.  For weeks I have given thought to the stories & situations I share. To this point, I have been open, honest and very very real.  The situations we face are not often typical.  Sometimes they are painful, embarrassing and just plain weird.  Sometimes the situations are hilarious and heart warming.  Often I am writing because I need to just get the grief, anger or frustration out of me and blogging is very calming.  Occasionally I hope to share a real life moment so that the mom out there who feels all alone just might stumble upon the blog and feel like "WOW I can relate" (because I was that mom and it really sucks).  Sometimes our life is just so outrageous I chuckle and know someone else will too.

I have pondered the privacy of our family and that of the people who may be involved and recognize the situations (although it is rare I would identify anyone).  I have chatted with my uber sensitive husband who has tolerated my blogging for 6 years now.  And for a couple weeks I have sat quietly.

I have decided at this moment in our lives, we continue on the course we are on.... we share.  We tell our journey.  Our story.  The struggles and the joy are real.  Very real.  Our family lives in a different way.  It is my belief that I am not causing harm or humiliation to my child or my family.  I share the real life events.  I can not expect people to understand all of what we experience but the quiet whispers and judging stares bother me less if I do my best to share our journey.  I can not expect people to know about sensory processing, ADHD, medication, ODD or any of the issues if I don't do my best to tell them what life with this is like... and it is not always pretty or easy.

I can commit to keeping it real and honest.  I can tell you sometimes I will vent in anger and frustration.  Sometimes the hilarity will bring tears to your eyes and you will wonder how we function.  Sometimes you will just want to hug me when I pass by.  And then there will be times when you go home to your quiet, typical home and are just thankful.

The love I have for my child is immense.  I would not trade him or any part of him.  The story we share is ours and we invite you to join us.

Reading to my child

I LOVE LOVE reading with and to my child. Each night he is supposed to read me one book and then I read 2 and then Doug reads him to sleep. (No he will not self soothe - that is a whole other topic - suffice it that this works for now).  

Here is the stress that happens....  He gets in bed and then argues & fights with me about reading.  He wants me to read one page, he a page. Then 2 pages. Then he counts words. Then it is a battle over how many words or pages, etc. It frustrates the crap out of me. I know he can do it. The process stresses me out incredibly bad. 

I LOVE the time when we can read. We sit together.  He is snugly when generally he shy's away from much physical contact.  He is generally calm because he likes to hear books.  Making him read to me disrupts that peace and quality time.  We have been doing it since school started.... this battle.  The best solution is not to force him to read to me at night.  Sure, it seems like having this battle after school or before dinner or ANY other time is a good solution.  Yet, he just gets angry about it.  I have calmly and patiently just stuck firm to "You read one book to mom and I will then read to you".  To absolutely no avail.  It has just become a battle royal.  

Tonight so horrible that I walked out. No kisses. No book to him. Just anger & frustration. And it made us both cry.  I never went back in and Doug listened to his book and then read him to sleep.  

And I sit here looking at these 2 bags of books, "dolch list" and the signatures needed on all of it and I am overwhelmed at how I am failing him by not FORCING him to practice at home.  All of this is sent home so we can practice and work with him and right now it is just stressing and overwhelming us.  I am failing to help him advance in language comprehension and ability to read.  Conversely, I am failing to enjoy the moments with him as he just enjoys being read to and not straining his brain to look at the words. 

And honest to goodness at this moment I wonder if maybe, just maybe, he is NOT ready to accept the amount information at the speed it has to be digested and we should somehow slow down and individualize his learning.  I sit here in tears about how we fail to allow him to tackle things when he is ready.  We historically allowed him to get where he needed to be when he was ready for it... school makes that impossible... he has to get where he needs to be when "the system" deems him ready.  And I feel like there is no way I do him justice because we struggle with practicing at home.  

We recognize he works hard all day to hold it together and learn.  His amazing teacher provides a rich and active learning environment and helps all the students to be the best they can and for all of these littles, it is REALLY hard work!!  For Espen, school is hard work ~ just keeping it together!  We have down time and quiet space for him to play, be physically active and use the parts of his body he worked to control all day.  We know he accepts information differently.  But to survive we encourage and force him to still "work" when he is home. He does homework, flashcards and reads.  Often, it does not end well.   

But tonight SUCKED. And that moment I can not get back. That moment when he just wanted to lay next to me and hear the book. That moment is a bitter reminder of how I am failing my child - because we must practice in order to succeed and meet the grade.  We fail him by forcing him to read when reading causes him stress and anxiety.  We fail as parents by taking away that moment he loves and forcing him to read.  We are helping him to hate books.  This .... tonight ... it feels like failure because mommy walked out.... 

hard afternoons

Yesterday was a hard afternoon.  It was as if my child became possessed.  Behaviors I have not seen for a long time surfaced.  It was one of those afternoons when I am not sure how we will make it and terrified at how we can "contain" it.  And yet the freaky things are off set by super amazing things which puts us on a tremendous roller coaster.

When you read that you may think about your worst moment with your "typical" child.  Or you may think I am an exaggerating mom with need for structure and rules. Or you may think you raised your own kids and how hard is it really.  Or you may not have kids and be thinking WOW.  It doesn't matter what you may be thinking, believe me when I say... IT was a HARD afternoon.  And it is not atypical for these types of things to happen but I have had them minimized for quite some time.

A blurry image of a frantic child.

It started as a pleasant walk home on a warm November day.  He found and pocketed an open and unfinished bag of Halloween candy.  The only way to get it from him was to manhandle him and probably chase him on the street so I chose to let him carry it home in his pocket.  Then I traded him a fresh bag for the opened one.  There is not a mom alive that would allow her child to eat something open and found.  But Espen would have defiantly just eaten it while racing away from me had I demanded that little bag.  A trade was wise ~ he received a fresh treat size bag of M&M's. And then all hell really broke loose.

Suddenly he was the greatest child flaring rapidly to the worst beast alive.  He was volatile and explosive.  Safety planning was suddenly out the door.  Screaming and thrashing at me and with a neighbor who was patiently trying to play with him.  It went so wonky that he dug up a worm and ate it in demonstration mode and then tore a fence picket right off the fence.  The brute strength and excitement over the sound and feel of that break lite up his face in a moment of extreme joy.  He was racing with out heed into the street and bouncing from topic to topic at warp speed, allowing no time for anyone to answer or think.  He climbed the tree to the outer most branch and balanced on one foot, swaying precariously in the wind about 40 feet off the ground.

In between those moments of wild he was incredibly talented with bike stunts, jokes and handstands. He was kind and brought the neighbors trash cans to her garage so they did not blow.  He was curious about the neighbors life and skater video.  He was gregarious and charming.  Until suddenly he wasn't.

I finally had to tell the neighbor it was time to go and literally tackle my screaming thrashing child to the ground and hold his little hand to get him inside.  Where he crashed into the couch throwing his shoes straight at me.  After a few moments in the quiet still house, he slowly became calmer and quieter.

He was starving.  He was tired.  He was mindlessly out of control.  And as I sat quietly after bedtime, exhausted I thought there was not much "thought" to him and the impulsiveness was strongly the leader of his mind.  And I thought about how thankful I am that he can maintain some reason of control all through his day because these behaviors are lessened at school.  They are lessened because I give him that tool that helps him succeed ~ the medication.  I thought about that small treat size bag of candy and the amazing colors he consumed and how quickly afterwards he deteriorated. (It is a small theory).  

How hard it must be for my child to be 100% mindful all day, learn, think, control, listen, absorb, remember... it must be terribly difficult.  Hard to maintain with peers bumping, talking, challenging, jostling all day long. Once the medication wears out and he is left to his own natural devices and he is allowed even that one treat bag of delicious colorful candy, the control slips quickly away.  The impulsive, dangerous, frantic mood swings occur leaving everyone in the path pummeled with fright, hysteria and exhaustion.  Typically the meds wear off and we have challenges but not of these magnitudes.

We made it.  We face a new day with new challenges.  We calm down.  We pray.  We pull out the books and talk about the things that can be better, different and helpful.  We choose just one thing we can not do on the new day... today he will not eat worms or bugs or things he finds on the ground.  It is that small thing that we have to work on ~ every single day.

No electronics

We took tv away from our child last week ~ for the whole week.  Not just tv; we took all electronics.  He could not play video games, ipad, read electronic book ~ NOTHING.  It was HARD.  Horrible if you ask him.  Challenging.

He does not do well with sudden changes.  It was sudden that we took it away but we needed a serious consequence because of an incident at school.  So sudden change resulted in some anxiety and weirdness.

TV has been his "calmer"... he can zone totally into it.  And for some fraction of his day, we have recently recognized it is not a bad thing for him to just zone out and allow his body to be still.  He has used it to tell me things, relate to things and generally script things when he is struggling.  We took it totally away.  No tv.  He had no way to zone out completely and re-focus himself.

There was not a moment of my time when he could be left alone.  Alone allows him time to wander.  So ever afternoon last week I spent every moment doing something with him.  (OH yea play therapy really works)!  We did the same things we normally do (including a ton of play) but it seemed amplified.  Because he never once stopped.  

this is by far our favorite family game

Our evening hour that generally we let him have something on we spent playing games and building lincoln logs and tic tac toe.  We laughed and giggled.  It was generally fantastic but slightly different because it was not the time when we do those things.  So many of our games are gross motor because that is what he is good at.  Many of them are not calming but stimulating in some fashion or another.  So that time when we usually sit quietly together and watch some cartoon or program, we were actively doing something.  While it was nice and quality family time it was perhaps not right.  There was literally no down time for our child for the whole week.

Being overly tired, he did not sleep well.  He was in bed with us several times.  Or up early for food or snuggles.  He was off.  He could not find a way to quiet himself down and allow his body time to rest.  He is not a child who has figured that out, nor one that likes to be still.

Not once was he quietly still.  Not one time was he just zoned out relaxing peacefully.  Not once was he thoughtlessly mindless about things and calm.  So while taking away tv was a consequence that made the impression we were going for, it had its own repercussion.  So today when he woke up at 6am and I cooked pancakes with him we decided it was time... We sat together and with no prompting he was able to tell us why he had such a serious consequence.  Then he got it back and he binged... he was quietly laying curled on the bed under the covers watching some cute show.  And he needed that down time.

When I find that "thing" that quiets his little body I will certainly use it.  This child is NON STOP GO from moment he is up to moment he is down.  There is NO stopping.  No resting.  No stillness.  He never stops moving and doing.  Not when he is tired or sick or hurt... he just keeps on going.  TV right now, gives him some moments of peace.

Back to the balance this week.  Hopefully!  (At least we have tv time!)....

Colors for lunch means rough afternoons

I am not a doctor.  Nor am I a counselor (though perhaps I should become one).  I am a fairly well educated mom of one child who presents me with a host of challenges and obstacles.  What I'm about to tell you is strictly my observations from our family ~ and a few articles that you can decide upon yourself.  

I have read a multitude of books about ADHD and plenty of articles about the impact of processed foods.  In my child there is a direct and dynamic relationship to what he consumes and how he behaves.  His behavior intensifies and worsens ~ we start to see even more problems including increased hyperactivity, irritability, poor concentration, restlessness and more sleep disturbances.  

Today his squirmy impulsive behavior got him on orange (which is worse than yellow but not quite red).  It comes in a week when we have already been to the principal for a separate impulsive issue that was quite serious.  It was reported to me by his teacher that he had a rough afternoon of bad choices, touching, impulsive crashing and the like.  It was puzzling.  So I contemplated it for a bit and tried to think of what we had done differently that may cause this behavior.  

Then it struck me... And I asked one clarifying question... Did the behaviors intensify AFTER lunch?  And indeed they did.  In a moment of weakness I had purchased a bag of Troll Strawberry Puffs and a container of S'More Little Dippers with Halloween frosting.  Yes... after several weeks of really great food choices I supplied him with Red, Yellow, Blue and a host of processed ingredients. He had the dippers for lunch (along with his normal healthy food).  

There are thousands of articles on the correlation between behavior and food.  I will put several well written ones here: 

Are Fruit Loops Evil?

Are Artificial Colors Bad for You?

Food Dyes and ADHD

There are many many more... all it takes is a google search. 

Basically, the FDA deems artificial colors safe for human consumption and yet our European friends find them to be unsafe and outlaw them.  The American public prefers foods that "look" a certain way ~ that is why we use the colors.  Tragically, the impact is noticed on a child like mine.  And perhaps on countless others.  There is speculation that the colors we consume actually cause hyperactivity and that children are being misdiagnosed.  That is not our case... but it is a solid speculation to ponder.  Maybe the reason Europe has far fewer diagnosis of ADHD is the foods they consume?! 

Today we are back to the very limited artificial colors and processed foods.  We believe in allowing him to try things within reason and it is extremely hard to prohibit all intake when we can not control the treats given by others at school.  We can monitor and control what we give him and we go back to what works really well.  

Pure food ~ as close to the way it is intended to be.  Costs more, harder to find, have to go out of my way to find it... all horrible excuses when it comes to the benefits for my child.  Whole Foods does not allow artificial colors in foods they carry.  Otherwise we read the labels.    

Tomorrow is a new day... one we get to start fresh at.  And my child will get that fresh start!   

Body Awareness

Body awareness.... it is so important to know where your body is in relation to something else.  But it goes beyond just knowing about your body.  Body awareness is our body movements in relation to the rest of our surroundings but also entails impulse control, spacial understanding, physical surroundings, abilities and level of hyperactivity.  For many, it is the pressure or touch sensations they exert or infer from something else.  In big words it is proprioception ~ how the body senses itself in the world.

After a freak occurrence this week, in which I was "accidentally" kicked so hard in the side of the head, we thought an emergency room visit was to be had to check for a concussion.  For two days now, I have been doing research on how to help my child understand where his body is in relation to other things.  Incidentally, we skipped the ER and just hoped my brains were not jostled around as not only was I kicked, but I fell and saw stars and had nausea for a good long time.  (yea... probably a concussion)

His body awareness is grossly out of wack.  He jumps on, off and over things haphazardly at best. He is currently watching tv while standing on his head and swinging his legs around.  He hugs hard, falls on purpose and crashes into things repeatedly.  He loves to be upside down.  He hits harder, stands closer, lays on top of and has no sense of how it feels for someone else.  Unfortunately, because weird and freaky accidents happen, I am often not caught off guard.  Other children or adults are not as ready and we are hyper concerned that his lack of awareness will seriously harm some unsuspecting person.

There are no magic answers or "cures".  But there are ways to help and teach him how to self regulate and self monitor.  Generally, some "heavy work" regulates things for about an hour.  It must happen frequently.  Heavy work can be wall push ups, chair push ups, pushing, pulling or wearing a weighted vest, blanket or bear.  Yoga can often help focus on deep breathing and mentally recognizing body parts and positions.  It is important to find yoga that is child friendly so that it is appropriate.  The martial art of Aikido teaches the principles of mind and body awareness and harmony between them. Occupational therapy can offer solutions and suggestions.

The answers are in this child who is wiggly and struggling before me.  The things he is good at often either calm or over stimulate him and must be monitored.  There are things we can learn and gather when we listen and watch, but it is a daily diet of balance we need to work to find for him.  His body will change dramatically in the next years and awareness will be like the ocean tides.  He will need the help and guidance, especially now when he comes dangerously close to seriously hurting someone (ME)!  And so we build things into our day, we research and read, we ask the right people and we find a balance for our child.

What the hell just Happened?

I looked across the field at my child, who I expected to be playing at a place that has been calm and peaceful for him.  And to my bewilderment and utter surprise, he was totally and completely WILD. He was darting at warp speed, jumping, crashing and crazily frantic.  I stood in fascinated confusion for a few moments and then attempted to grab him.  I missed the first time he passed me so I stepped up my game and leaped at him.  I got him and managed to thwack him accidentally in the head causing him to scream as if I were killing him.  He was oddly maniacal.  His heart was pounding, his eyes bulging and darting about, his body grossly out of control; he was searching for a calm place and it was no where.  Sadly, he did not get that I was the safety ground and was doing my best to get him to a calm place.  

It took all of my strength today to haul him to the car.  He was screaming and thrashing.  It was not pretty.  We caused a small scene.  Once there, sobbing he told me he was really thirsty and hot.  I cooled him and gave him a drink and started to drive.  To which he started screaming at me to stop because he wanted to stay ~ that he loved it there.  We left.  I was confused.  This is not the behavior or the look of someone in a good place.  

The farm is generally such a calm and happy place.  I have not had to worry about where he is or what he is doing in the past.  Today he lost himself.  I lost him.  In a text message to my husband I said our son is possessed by wild animals on the run from hunters in a raging fire.  He could not see me nor hear me.  It was upsetting.  And utterly frightening.  

The worst part was he was not able to tell me what was it that bothered him or set him in the wrong way.  He could only tell me he was hot and thirsty and wanted to stay. 

There is no text book answer for the way our life goes.  It just happens and I roll it up and deal with it ~ whatever it is.  

So we drove.  We calmed down.  We talked about new things.  We held hands quietly.  We stopped at an acre he is attached to and he played in the quiet sunset in the trees and tall grass.  He was found again.  

I may never know and it is ok.  I just go on loving on him.  

There is nothing that prepares for days like this.

Why I do it....

You want to know why I volunteer at the school.  Why I am the room mom, the art room helper, the PTA president, the "volunteer of the year" (sorry ladies but if you thought you were winning, I already have the crown)?  You want to know why I walk my child in, eat lunch often and walk my child home?  You want to know why I smile and rarely complain about the hours I put into the place that I send my beautiful little boy 5 days a week for 7 hours a day?

Because my son tells me absolutely nothing about his day.  I can creatively ask in hundreds of ways things he learned, did, or saw.  I can inquire in equally numerous ways about friends, lunch, recess, specials.  He tells me NOTHING.  This year, the teacher has the students color the day based on where the behavior stick landed.  If there were issues, she lets parents know what they were.  This is generally all I know about his day.  Because let me be very clear.... HE TELLS ME NOTHING.  

I can see what he is learning from his homework that we struggle through each night.  Not because he can't do it, but because he doesn't want to.  I make him read to me every night so I know he is learning to read.  He loves notepads so I can see he is writing and he painstakingly will write me notes on rare occasions.  

I do not hear about the small or large things.  I do not hear about the funny or sad.  I do not hear about experiments, activities or books the teacher reads.  I do not hear about the art project or the assembly.  I don't hear about the thing he cut up or drew or wrote. I do not hear about the playground or the naughty trouble or the kind gesture.  I do not hear about your child or the silly things they do.  I hear NOTHING.  Nada.  Zip.  nothing.  

And I will venture a guess that you hear plenty about what your little one did as well as what mine did!  

I volunteer an exhausting number of hours at the school because I can peek in, I can be part of and I can know what he is doing.  I do not do this to hover or to be overbearing.  I do my best to be non-obtrusive.  The theory that he doesn't tell me because he knows I am there is hogwash.... I started going because we were not hearing from him and we needed to know.  

I am there so that we have some place to begin conversations.  I am there so I know names and can ask the specific questions with specific names.  I am there because it is the reality of our home. Espen just does not tell us one single thing about his day.  

Certainly a we may hear something on occasion but it is generally out of context and we have no knowledge to base the information on.  It is just generally very random and at very random times.  He has no back story and once that snippet is said, he moves on and is done.  

It is as if he spends the whole day and then can remember only the last moment.  It is
troubling in many ways but we just know it is who and how he is.  I spend my time catching pieces of his day. Because at the end of his day, I do my best to help him remember some part of it... what he had for lunch, where he played, what word he wrote for a spelling word.  One small detail of recall.  It is important. 

He lives totally in the moment he is in.  He lives fully and completely and then quickly moves past and beyond it.  And yet, he has an incredible memory and with clarity and extreme detail, he can recall the strangest things from the past.  Moments that are not worth remembering he will recall and share completely out of context to what is happening.  But this day... this moment... he has just moved on to the next.  As is his day at school... by the time I see him in the afternoon, he has moved on to that moment with me.  This is our reality.  

And so I volunteer and peep in.  I get a video or photo text on occasion.  I cherish that.  Because as parents, don't we want to know what our children are doing all day, who their peers are, what fun thing that made an impression on them... we want that!

To know.  To know about my child's day.  This is why I do it.  Because it matters.  

Shopping

As odd as it is, I have not taken Espen to the store for quite some time.  Shopping is rough with him. Has always been.  No matter the store.  No matter the reward for good behavior of the consequence for bad behavior. 

Last week, because of bad timing, I have had to take him to Sam's, Whole Foods & Walmart Market. And it was not good.  Before we went in... he was perfect (as perfect as Espen can be). As soon as we stepped foot inside any of the stores, it was if he were possessed by wild spirits. Jumping, spinning, crashing onto the floor, wiggling, wandering off.  What should have been painless and quick turned into stressful long excursions.

It frustrates and infuriates me.  Because I think "we should be able to handle this".  And we get home, exhausted and frazzled.  We both do something that is calming and when I have a moment to think I always go back to Sensory Processing Disorder.

SPD affects the way a child processes messages sent to his brain from any of the five main senses -- sight, hearing, taste, smell, and touch. He might have mild sensory intolerances or he might find it extremely difficult to handle sensory stimulation (such as when he's at a busy grocery store or a loud sports event). Normally, if a child is tapped on the shoulder, his nervous system informs his brain that he received a light touch. For a child with SPD, the message can get misinterpreted and the child may feel that he was hit hard. Or the message may get completely lost, leaving him unaware that he's been touched at all, explains Lucy Jane Miller, Ph.D., founder of STAR Center, an SPD therapy and research facility in Greenwood Village, Colorado. Most kids with SPD are a mixture of both over- and under-sensitive, which explains why inconsistent behavior is a hallmark of the disorder, adds Lindsey Biel, an occupational therapist (OT) in New York City and coauthor of Raising a Sensory Smart Child.

Two lesser-known senses that can be affected by SPD are the vestibular and proprioceptive systems. They detect incoming sensory information, which is then delivered to the brain. Vestibular refers to movement sensations such as swinging or going down a slide. The proprioceptive system provides information to the muscles and joints, like telling the legs to apply more pressure when walking up stairs than when walking on flat ground, for example. If messages from the proprioceptive system get confused in the brain, a child might appear to be excessively clumsy or aggressive because he's not aware of how much force he's applying.

Continuously receiving jumbled messages can be frustrating for a child, and his inexplicable reactions to everyday happenings can be confusing to his parents. His behavior can become even more unpredictable when he's asked to transition from one activity to another, as was the case with Charlie. When a child's nervous system is working so poorly, it can take him a long time to focus and settle into what he's doing, explains Biel. Asking him to turn his attention to something new could be just too much for him. ~ excerpt from Parents because honestly it is a good description.  

And thus I am grossly reminded of all the stimulation and sensory interactions that take place in a crowed supermarket.  Things I don't notice.  People, smells, sounds, actual items on shelves and so much more.  These very things are what cause Espen to struggle.  They are the reasons he can be "perfect" just prior and just after.  Once inside the store, he is just manically overwhelmed.

It seems natural in that regard to NEVER shop with him!  Yet that is just not practical nor is it helpful to him in the future when he will navigate the world with less help from me.  It is my job to try to help him figure out how to maneuver situations that are challenging and just really hard.  So in a few weeks I will be brave and try taking him with me to the store.  And I will try to be prepared!

The truth

You want the truth?  The things doctors, counselors and teachers won't tell you.  That you have these letters and this handful of paper and no idea where life is going to go now.  No one tells you the really important stuff.  The things that you will experience that will set you apart from other families are the same things that make your family amazing. The things you struggle with are things some will not have a clue about.  That every day you have to be on the top of your game, that you don't get a "day off", that frequently it will seem like no one understands and has never been there.  That you have choices to make and they suck and are hard and people will judge you no matter what you choose.  That you can give voice to your life or live in total privacy and it will not matter ~ it will be extremely hard and people will judge you still. That even when you trust your child's doctor and want help, the best advice is textbook and "in theory" and often just not fricking practical.  That when you finally feel like you've gotten control of things IT WILL ALL CHANGE in the blink of an eye and you will be at the breaking point.  And that tomorrow is a new day.

My truth is ~ having a child with SPD & ADHD & ODD is no walk in the park.  Not even a fast sprinting kind of walk.  It is a frenzied blur of non stop movement with no destination nor end.  It is crashing and banging into and onto things.  It is loud and swirly and very rarely calm.  It is honestly riveting and excessively entertaining.  Until it is not and then it is what makes you break down and cry.  And trust me ~ crying is just part of things.

It is having a very warm little body next to you most nights of the week whose toes and legs never stop moving.  It is having food in the middle of the night often and then not going back to sleep ~ like a frat party but with less fun.  It is aggression and hard hugs.  It is running and lack of safety awareness causing strangers and loved ones to panic simultaneously.  It is smacky attitudes, lack of filter and eye rolling.

It is watching tv upside down and listening to loud music to "feel" the bass.  It is being frantic over things that don't matter and not caring about the things that do.  It is lack of time and place in time.  It is not having body awareness or empathy for when your body is out of control.  It is having a hot shower after a cold jump in the pool.  It is eating with your fingers at warp speed because a fork is just in the way and you must hurry because well there is something else to do or not.  It is lies and half truths and misinformation.  It is experiencing every part of life with ever sense you have ~ living large, loud and messy.

It is screaming because everything about life is structured and planned and independent abilities are cramped.  It is doing before you even think of thinking about it.  It is being done before you realize that it was not smart.  It is eating the things that may not be edible.  It is smelling strangers and standing to close.  It is sitting close to the action with no way to get away.  It is eating one brand of hotdogs on a divided plate with only ketchup and grapes every night for weeks and then suddenly not.  It is not eating.  It is wearing your clothes backward and inside out and not even caring.  It is playing in things that should not be played in.

It is not being able to hear because your fast focus was elsewhere and no where.  It is painful and exhausting.  It is yelling and crying.  And maniacal laughter.   It is the fact that no matter how many charts, picture clues and structure you provide in your house ~ it is the SAFE zone and your kid will be bat shit crazy.  It is a fact that no matter how firm, consistent and diligent you are, your child will melt down and act badly, make poor choices and drive you nuts because you are THE ONE they target, they are safe with and who loves them with out question.  It is locking your house like a prison/fortress to keep everyone safe.  It is always having the same shampoo, cleaners and laundry soap.  It is making the choice to give medication, go to therapy or not.

The hard truth is my special child is the most loving, kind little boy.  He is funny and creative.  He has abilities to do great things and I foster all of that.  The truth is I appreciate how hard it is to be inside this growing little wiggly body and I build support around for him.  The truth is that we have been doing this for 6 years and it is easy and hard.  The truth is that no matter what we do, we have meltdowns, yelling, crying quickly proceeded by utter joy and happiness.  The exhausting fact is that we are not perfect.  The truth is that sometimes we forget the most basic of things and we have to go back and remember that sensory things matter a great deal.  We have to look past the meltdown and see the amazing little boy under there and help him find a way.

The thing no one tells you is the days will be long, hard and so full of love you will find a way to make it to the next one.  Lock your fortress and kiss the wiggles... tomorrow is always a fresh day and we all get a fresh start.  It all re-sets tomorrow. 

Tooth Fairy

Epic mom (and dad) FAIL.

Espen has lost 3 teeth.  THREE.  And twice now we have failed the "tooth fairy" duty. 



this of course is what she looks
like as we have watched this
movie about 400 times

That is correct.  We (although I am not sure what role my husband plays in this nonsense) have forgotten to take the freaking tooth out of the box and leave him some money.  And this obsessive child BELIEVES in the tooth fairy.  And I think believing in things you can't see or feel is quite ok.... except I guess I have to be on top of my game not drinking Moscow mules and reading captivating books late into the night....
The first time he had the tooth box under his pillow.  When he woke at 6am COMPLETELY UPSET that she forgot (yes dam it she sure did ~ what the hell) I decided to LIE and tell him it was probably just to early or that she came but could not find it under the pillow.  Thankfully he lay in the bed with me and watched Netflix that early and I snuck out and made things right.  So about 7am daddy was leaving and casually asked if the tooth fairy came and they went to check.  WOOP WOOP... that lazy fairy had finally made it.  Her bag of teeth that day must have been incredibly heavy causing her to fly slow and late.  So he got the dollar and I swore I'd be better at this nonsense. 

Yesterday he lost a tooth.  Oh man he was thrilled and excited.  It is a top front tooth that he popped out in the driveway and found.  He carried that stinking tooth for about an hour and made me look at it and the gap repeatedly.  Loosing a tooth is a HUGE deal to my child.  He worries on the hole, on the tooth, on eating... He gets anxious and over excited.  He talked about the tooth fairy coming for HOURS.  And because he remembers things that I think inconsequential he recalled that lazy tooth fairy forgot him last time.... OH YES SHE DID... she would not fail this time.  (It was probably her minions, the little teeth that were so negligent). 

Last night he left the tooth in the box on his window sill (above the bed so it was very clear to her) and he left an extra box just in case she wanted to leave a little something extra for forgetting last time. He had a hard time falling asleep because these things over excite him.  And at 6:30am he was in my bed waking me from REM sleep with a TOOTH IN MY FACE AND A SAD TEARY "mommy she forgot me again"..... (oh crap).  (Guess the mules kicked me).

FAIL.  fail.  fail. (can you just see me suddenly awake, doing a forehead smack and quick thinking how to make it right).... And the husband walks out of the bathroom and leans over to whisper to me "great job ~ mom of the year"....

So I had to be all indignant and upset for him (apparently our tooth fairy is quite lazy).  I quick on the spot made up a story about how perhaps she just doesn't get here so dang early.  And derf she probably did not know which box to look in (she is also quite dumb).  So he put the tooth (yes, the tooth, not the tooth in a box) next to us in the bed and lay quietly for awhile.  Daddy finally convinced him to put the tooth back in the box in his room and we could see if maybe that lazy tooth fairy would still come...

And thank the lucky stars above ~ SHE DID!!  Left a little dirty foot print and took the tooth and left a real paper dollar..... HOLY CRAP.... If we had tried again tonight I am quite positive I'd have forgotten twice in a row and that would not be acceptable mom behavior.  Now he has two stories about how the tooth fairy forgot him... he will not forget that, it doesn't matter that he has some cash... If I keep this up, we will be paying for our forgetfulness (Ch-Ching).  

maybe we need this instead
of the box under the pillow so
that when I pass his door I can REMEMBER!!


So if you also have a lazy, dumb, messy tooth fairy do not despair... she apparently needs to focus on the task of being a good fairy instead of lazing about leaving messes and partaking in mixed drinks....

I have now told him that he must brush his teeth really well and use only one box and not wake up so early....  I have lots of teeth to go.... maybe I will get it right the next time..... 

We belong no where and yet we belong everywhere

For days now I have been hyperventilating over this... We belong no where and yet we belong everywhere. 

Let me explain.

From early, I knew, deep in my "mom gut" that my child was just different.  Weird.  Wild.  Strange.  Curious.  Sensitive.  And for years, that's right, YEARS, I was advised to just let him be a boy, that I was to high strung, that it was all normal and since he was an only and adopted (there is that) I may not know what the early years are like.  We just never fit in or belonged with anyone, anywhere.  Well at age 3 we discovered he has sensory processing disorder.  OH JOY!  We had a name for some of his peculiar habits and we had some resources to help him!  Imagine my elation! 

But we still had problems and issues.  Concerns.  Behaviors that were startling and not typical I could not explain.  We could not do things that typical families can do ~ play dates, library visits, shopping, vacation.  We lived, we often joked, in a fortress because our home is chemical free (he eats things), locked down (he is a runner) and nothing ever gets moved (causes anxiety).  We were just not normal.  We did not belong.  Finally, he was enrolled in the Early Childhood Preschool through the public school and we were happy that someone may see his issues in a new way. 

The summer before kindergarten, we busted our family getting services.  We fired a pediatrician and found a new one.  He was diagnosed with ADHD and ODD.  We were struck with disbelief in the beginning but digested that information with relief because YES indeed that diagnosis explained much of our differences.  After several months of services and the very hard decision to medicate, some behaviors leveled off but there were still major issues.  Our pediatrician also diagnosed him with autism. 

Because of the 'system' he was tested at several places (we completed a crap ton of paperwork).  The school district does not recognize him on the spectrum, but because of education and behavior concerns he qualified for an IEP.  Yet we can see some of his peculiar habits and they can not be discounted.  He learns and behaves differently.  It is not an excuse, it is our reality.  It is still hard to belong. 

So back to my early statement.... We belong no where and yet we belong everywhere. 

He is learning to manage pretty well but there are triggers that drive him crazy and he just can't always find a way through it.  He plays and responds differently.  Crazy follows us like a bad stink and we sometimes walk away feeling like complete lunatics.  

The thing I mull over late at night is that we keep trying.  We keep doing our best.  We keep exposing him to situations and adventures.  Sometimes we fail and we take a break.  Sometimes we succeed!  We have made fantastic friends that just take the good and the bad.  We find groups that accept our particular level of wild and deal with us anyway.  We belong everywhere.  We found a village.  And that discovery takes its toll on mom.  It is constant work, education, communication and patience.  Yet my child needs to feel like he belongs... I keep on. 

I hope to inspire others.  I hope to share our story, our strengths and our journey.  Because raising a child with any special need is exhausting and trying.  It is full of appointments, meetings, paperwork, telling and re-telling.  There is a lot of tears and just as much laughter.  There are dark days and nights.  There is little sleep.  There is fear for your child and for yourself.  There are days you will not belong anywhere and then you will belong somewhere. Keep fighting... it will be worth it.  

Terror or terrible

My child is amazing.  Let me make that clear from the start.  He is who he is and I love him for that little boy.  He is my wish... the one I wished years for... he is that little boy.  Beyond a doubt, I adore and love him. 

I do not however like or even enjoy the wicked wild behaviors.  Those behaviors irritate and infuriate me.  I won't lie.  It is incredibly hard.  The horrible moments happen fast and are often extreme.  He can be laughing happy child one moment and evil beast screaming and crashing the next.  It is exhausting and hard to keep track of.  The earlier or later we get in the day, the more active we have been throughout the day, the amount of sleep we may have had, his food / water consumption all play giant roles in the swings.  And sadly, from all I have asked, all I have read they are "NORMAL" behaviors for a child like mine.

I am talking about the moods that are farthest from the medication.  Either before he takes it or as they wear out of him.  For us, at this moment in time, the medication helps him to be a fairly even tempered little boy and as long as the boundaries and expectations are very clear, the day is structured and his calorie consumption is monitored he does fantastic.  The wicked behaviors are outside of that.  They are what we would have on any given non-medicated day. 

For me, his mom, it is draining, frustrating and horrible.  I feel confusion and sadness when I just can not seem to do anything that will make it right.  I don't try to fix him or the situation but I do have to manage, monitor, correct and redirect.  There are moments in our day when I find myself yelling at him just so he can hear me.  Yelling to get his attention, to make a point, to simply be heard in the chaos of our life.  Yelling makes me feel like an incredibly horrible mom. 

While in that moment of yelling I absolutely hate the issue and fiercely love my child.  And it absolutely sucks.  This is the part of being a parent in a special needs house that no one wants to hear about. 

There are moments when it is horrible.  There is yelling and screaming and tantrums are thrown.  There are times when the behavior, the issue, the exhaustion are all overwhelming to everyone.  There are moments when we yell and scream and crash because in that instant, it is all we can do.  These are not the moods or tantrums of a spoiled little boy trying to get his way... this is something more.  This is violent and assaulting and harsh and ugly.  This is the stuff no one wants to hear about but the stuff that happens. 

There are times when we cry together after I have run after him, caught him thrashing his little body around, tackled him to stillness and let him kick his little legs into mine.  There are moments when I walk away from the yelling only to be drawn back to it and end up yelling myself.  There are times I have managed to get him into his room to hear anything not nailed down crashing down.  There are times I sit next to him with silent tears sliding down my face as he cries and tells me is not good enough. 

These are the things no one talks about.  The hard, miserable moments.  The moments of gut wrenching terror that so often accompanies our day.  The anxiety of knowing it can strike any afternoon and like a tornado, I never know where it is coming from or where it is going to go.  The fear of waking and stumbling quickly into this kind of mood. 

These are the moments I dread and that we have not found a resolution to.  Maybe there is not one.  Maybe we just manage it the best we can each and every single time.  Maybe I just ride out these horrible moments because history shows me that he can be charming, amazing, orderly, obedient, curious, incredible the next... we just have to roll.  But the moments are hard and like stepping into dark depths of hell. 

Make no mistake... I love my little boy with every ounce I have.

in response

I just clicked on a link from a friends page on face book ~ here is the article ~ and I was in disbelief and disheartened.  Every day I work to educate and inform people about what our family faces with ADHD, ODD and high functioning autism.  Our story and life is the same as some but hugely different then most.  While it is always good to share information... ADHD is a real problem... This article was written in 2012 and by a woman who has written several books (one of which I have read).  One of her points is that ADHD is on the rise.  Common statistics demonstrate a huge increase in numbers of ADHD diagnosis ~ numbers jumping from 3% in 1987 to 11% in 2014.... anyone want to remember that the population has increased drastically in those years?!  

 

The above referenced article discusses why the French have virtually no cases of ADHD.  The European nation has a vastly different view of many things and tolerance for artifical ingredients is much different then it is in the US. They also have different maternity programs, educational systems and vacation/leave for family time. In many Europen countries, there is still the attitude of raising children as a village while we see it as a unit and rely on self and the screen. It is comparing apples to oranges in many instances.

These articals get me fired up and here is why.... For 5 long years I did absolutly everything in my power and ability for my child and yet he had issues, problems and huge concerns that were not addressed by regular and repeated visits to the pediatrician. For five long hard years we were fighting an invisible force and we were terribly alone in our struggles with seeing how DIFFERENT our child was from his peers and not having one single answer as to why.  We had become fairly isolated becasue play dates ended in disaster.  We could not take him to stores, restaurants or on vacation without some huge issues and problems.  There are few people who can accept and tolerate the level of activity we bring to any situation.   We did an elimiation diet and still he eats very few processed foods, artifical colors or preservatives.  We could not teach him basic "preschool" information because we were managing safety, running and behavior concerns.  His behavior and hyperactivity created dynamic problems once he entered school.  There were days we both were in tears with the teacher or the principal becasue of some huge and terrible problem. I disipline him harshly by US standards. I have spanked, taken things, done immediate time out and walked out of places with a screaming child because of bad hyper behavior. I am THAT MOM. And still my child has behavioral and sensory problems.

The notion that I have not taught my child self control and that I use medication to mask behaviors that can be changed is frustrating. We hear it from family, friends and others that if we were just more strict, more structured, more...... (fill in the blank) then our child would behave better. In reality his little brain DOES NOT make the same chemicals that mine or yours or your childs makes and he is NOT able to control himself.  No amount of sleep, food adjustments, discipline will manage that. It won't matter if his gut is healthy when he punches your child for making a loud noise or runs out of the school because he felt like the walls were to close, or pulls the hair of the little girl next to him because it was swinging and bothering his vision. It won't matter how many times I spank him or put him in time out he will still not be able to sit in the chair or at his desk and write his name on the paper.  It doesn't matter the amount of preparation we put into going to a simple store, as soon as we hit the door the lights, sounds, people, stimuli make his skin crawl and his mind engulfed in frenzy.  All the external stimuli that most parents think cute and great drives my child insane.  Yet it is how our schools are, how our shops are, how our lives are... full of STUFF.  It is all this that distracts him, and makes his mind a jumble of nonsense. And yet the best place for him to learn at this moment is the public school and it is here that we have to learn to function.

The choice and decision to medicate my 6 year old came with much prayer and a very heavy heart. It is a decision I have to wake up to each and every single morning. It is not easy. But the alternative is watching my child fail. The diagnosing doctor once asked me as I was complaining about medicating my then 5 year old, to remove my glasses and drive home. Impossible. As is it with his medication... it is impossible for him to function.   With medication, he can be better able to function, better able to sit and take in the information, better able to ride his bike and not crash into people, better able to stay with a grown up and not run away, better able to make choices himself that are healthy. With medicaiton he can do "normal and typical" things ~ and that is what every mom dreams about. Without medication he is struggling to just be in his skin and his body can not take in any more information.  Medication does not change my child.  It does not take away his impulses.  It does not make him listen or function.  It gives his brain the ingredients it needs that he can not get anywhere else so that he may be open to receiving the information and learn the abilities to cope.   

ADHD is on the rise in the US. Absolutely because there are more people in our America.  The DSM has lumped more things under the umbrella so the prevalence is greater.  Absolutely some of it may be attributed to a generation of people who find it easier to medicate.  Medicating has become a societal norm perhaps. 

 

We have decided as a society that recess, outside time, play, discovery, family time are all less important than test scores, screen time, checking that app, watching that video and playing that game.  We should ask ourselves what kind of world are we creating.... We hide in our homes as single family units and we keep our issues and concerns to ourselves.  We don't ask for help from our neighbors or friends because of the embarrassment, stigma and frustration level that it may cause.  We take art, sports, recess, music out of schools because kids need to be smarter and study harder.  Maybe some of these contribute ~ maybe none of them.  Because even if I lived in France, my child WOULD BE MISSING SOME HUGE CHEMICAL COMPOUND IN HIS BRAIN.  And it would be hard for him to function.  As his parent, I may have to work less to provide him healthy food, a healthy environment and a village of people around us. 

 

Medication aids him.  It is a crutch for a broken leg, glasses for poor vision, a cough drop for a scratchy cough.  It is an aid.  Medication does not cure him.  It is something we face for LIFE. We work each day to teach him how to be part of this society we are all building. For him, medication is beneficial and at this moment, life saving.