Are we just settling?

Last night I shared the absolute drama that we experienced during the night.  Here it is in full but you can read more about our daily adventures at one sensational kid on facebook. 

At 3am, still awake I am out of ideas. We did not tell him it was the weekend hoping he would sleep until 7am!  We let him stay up until 8:30pm, an hour later (this is the mistake).

Espen woke at 10:30pm and over the last 5 hours, has torn up my nerves and his room. I lay with him. I yelled. I cried. I held him down while he screamed. I gave him another dose of melatonin. I watched him destroy things. I angrily removed every toy from his room (they won't be back because they never get played with and honest are a huge distraction at bedtime).  I sat with him in the kitchen while he had warm milk & a snack. I listened to him talk. I answered his questions. I watched him wiggle. I left him alone. He moved his bed. Piled up his books. He whistled. He showed no sign of slowing down.

It is like a freight train and I am not equipped to stop it.

I cried. I prayed for wisdom, insight, patience & guidance. I made deals with myself, Espen and fate. I cursed the gods and devils who let this crap happen knowing full well I wasted my breath. I saw my husband googling shit about what we could try next. And knew it was a useless search because we have searched before. We spoke in harsh whispers about how THIS is the hand we have been dealt. How this is who our child is. How no matter what we will have to get up & be on top of our game tomorrow. That Espen will carry on with more energy than he needs and one of us needs to have a fraction of reserves. We softly agreed that at least we are home & have no visitors to deal with the mess.

We quickly discussed how most people can not fathom what this feels like. The fear of what is to come in 6 months or 6 years. The wakeless nights that make us blurry eyed. The fear of deep sleep because we never know when he will wake nor what he will do.

I listened as Doug finally caught him and held his thrashing exhausted little body. I took my leave with a tear and a kiss as he screamed at his dad but settled down to hear a story. And as I lay here I can hear Doug reading (at 3:30am) and I know he is still holding Espen.

This is how it goes. This is a "regular & normal" thing in our house. And this shit sucks. Be honestly thankful if you do not experience these kind of nights. But tomorrow is a new day. A fresh start. Even exhausted we get a clean day to do our best.  And my anxiety about the night I will just cover up because I can show no fear.... 

It is real.  It is very honest.  It is our wild and weird life and I choose to share parts of it.  Today after some text messages about the night in general, a family member suggested that I am settling for this life.  I have thought about it all day.  I was angry.  Hurt.  And in a quiet moment asked Doug what he thought. 

Yep.  I suppose so.  At this moment we have settled for this way of life. We choose it.  And we let crazy rein down upon us! 

 All of us are working with what we have.  We all have some struggles and hard life events.  The ones we face are not ours alone.  We are not alone.  The difference is that I talk about it out loud.  I crack jokes and share personal failures and triumphs.  I am brutally honest about what happens in our life ~ the good, the bad, the super funny and the really ugly.  I do so with intent and purpose.  Because some days it is the only thing left for me to do.  Because living this life is isolating and hard.  Because our story is so hilarious I must share it!  Because if I expose the life as it is in this exact moment, then I might be opening a door to communication about hard topics.  Because some place there is probably someone who finds some comfort in the crazy I write about. 
   
Yes we settle for this.  We choose it.  Absolutely.  There are many children that have ADHD and are medicated.  There are many that have weird and random sleepless nights.  There are many who do not.  We are not alone.  We have explored options.  We see the doctor often and have discussed it at length.  We have to see the doctor.... I have to actually have a paper prescription.  It can not be faxed or called in.  Espen has to be evaluated every 30 days (per our doctor & insurance) for me to actually fill a prescription.  One chemical away from meth.... they better be careful....  So yes we discuss all the options, side effects and weird things with the doctor.  We let Espen have his input and say how he feels.  We ask the teacher for any "weird" she has noticed.  We are not just giving him drugs randomly.  We can expand his medication to include another medication to help him sleep. We can participate in a sleep study.  We can give him booster pills to maintain his behavior longer during the day.  We can give him medication to increase his appetite since the ADHD medication decreases it.  We can of course try oils and melatonin.  We can eliminate sugar, processed foods and caffeine. 

We settle for THIS because we choose not to add medication to medication. We decided at this moment, the best thing for Espen and our family is to live with the other wild things and just give him one medication for one reason a day.  THIS ADHD is not something we can medicate and it will go away.  Nope.  This is his life... he will not "get better".... we will teach him how to manage.  Manage in all circumstances.  This giant issue can be managed better with medication but it will never go away.  We choose to do it this way.  The hardest way possible perhaps.  But already he fights us on taking one pill a day (and he can actually make a choice about it).  We choose to try every single time to teach him how to behave in "societal norms".  We power on with these weird hard struggles because we know they don't happen every day.  We settle on the hard days because one day he will decide he won't need my help, his medication or any of it and I want him to be able to get through because he has knowledge about how to do it with no assistance.  These hard nights and struggles may be "practice" for what is to come.  We are not sleep deprived for weeks at a time, we are not starving, we are managing all the poor side effects to the best of our ability.  WE make the hard choice to do it this way.


It may not be the best way.  Or your way.  But it is the way we do it.  And that means that our life is messy.  It is exhilarating and hilarious.  It is super sensory and wildy energizing.  It is flat out exhausting.  It means we go to bed early some nights and stay up all night on others.  It means we teach our child things you may not ever need to address.  It means we work hard and smart.  It means even when we are exhausted we don't give up or give in.  It means we manage with the most limited amount of medication we can give him and if in the future we need to change, we will figure out that too. 

We never asked for this life.  And we know it is not "normal".  But I guess we do settle for this life in a way..... Because we are deciding not to medicate our small son to fight the effects of the first medication.  Settling for this means we have to stay up all night and awake all day because Espen sure will!  Settling for this means it is OK for us to be wrong and mad and cry.  It does not mean we have given up.  We have settled for this because we will not just settle for the easier route of medication upon medication.  We will choose to do everything else first. 

And maybe last night in my honest ramblings it was not about the fact that we were up again in the middle of the night.  Maybe it was just a plea for compassion, understanding, prayer when mine have worn out.  Maybe I needed someone to hear how angry I was, how isolating it is.  Maybe I wanted to say to other imperfect parents ~ I get it!  Perhaps I just needed anyone close to us to just know we are struggling to just figure out some things and not to give up on us!  Maybe if you passed by our house today and saw 3 happy people outside playing in the snow for hours you'd just silently say "YOU GO GOODMANSON FAMILY"..... We have lots of hard moments.... but we have millions of amazing moments.  We are settled on living this life to the best way we can.  I have invited you to witness them so that you have compassion when you may not have. 

Easier

It gets easier.  That is what I might tell a mom with a child that has behavioral issues.  Power on even when some days suck like nothing you have ever experienced.  It gets easier. 

(Or maybe it doesn't get any easier.... maybe I just got used to it and can accept it better). 

When Espen started preschool at a private school two days a week I was consistently the only mom to get talked to after school about my child's bad terrible naughty behaviors.  Believe me, the first 50 times it happened I was mortified.  Humiliated.  Embarrassed.  Sad.  So confused about what to do for my little boy.  I'd get him in the car and I'd cry the whole way home.  I'd question everything I did as a mom. 

Then we found some help.  We started getting help for a sensory processing disorder and it eased some of that stress because I could help him.  It did not help our isolation or desperate need to have people understand.  And even with therapy three times a week, we still struggled and parts were not right. 

When he started preschool at the public school in the specialized classroom it was the "perfect" situation and it was infrequent that I had a bad report.  How could I when there were 8 children and 4 adults?  But we still had some troubling days and situations.  Days I would still wonder and question.  Days I would cry and pray.  But it was easier.  Easier because all the children in that classroom had other needs and those moms just got it.  I was judged less harshly.  No one paid any mind to our bad days; they were managing their own bad days.  We however had to stop most "normal" play dates because he did not respond or react "normal" and it was extremely hard to make it work.  So while school was fine, social skills were not fine and we still struggled with the horrible judgments and lack of belonging. 

Now he is in public Kindergarten.  The teacher is the most amazing woman in the history of teaching.  My beautiful, wild, sensory motivated little man acts quickly before he thinks and often finds himself in the midst of some bad choices.  He struggles even with ongoing therapy and medication to help with ADHD.  He has bad days even with a plan in place to help him. 

Today was one such day.  And as I stood there waiting to chat with her I realized that it gets easier.  Easier to be THAT ONE MOM with THAT ONE KID.  Easier to look the other moms in the eye as I wait and silently dare them to go ahead and ask me what is the matter. Because most of the time I don't really know.  It gets easier to not be ashamed and humiliated because he just is not able to make it all day.  It gets easier to say "yes my child looks normal.... he is athletic and active.... but he has some special needs.... and those are often behavioral....."

It gets easier to know that all the moms hear about it because their children go home and tell on what happens at school.  Mine doesn't.  He says nothing.  I mean NOTHING.  It gets easier to just deal with it and move on.  It gets easier to just hold your head high and love your child no matter the weird circumstances.  It gets easier to talk about the issues. 

It gets easier.

sleep over

A sleep over.  Oh no thank you.  Not with grandma.  Not with an aunt.  Not with a friend.  Yes I am being inflexible.  I know you are thinking that if I am not there, he will fit into your routine and rules and just go to bed.  I know my child very well ~ it won't happen. 

Will you be awake at 3am?  Is your house secure beyond the reaches of my five year old?  Do you have harmful things where they can be found (medication, matches, weapons, cleaners, alcohol)? 

Our child goes to bed the same way every night.  He gets in his bed with some drama at 7:30pm.  Mom reads & snuggles.  He has a snack.  Dad reads.  Sleep.  Sometimes Dad has to sit in the room until he falls asleep.  On average, our entire routine is 45 minutes.   On the occasion that Dad is not available, the pattern is OFF and the period of time that it takes to calm down and go to sleep is much longer. (Mostly because I have to answer a thousand questions about where is dad!).  He has a routine with Hannah (the amazing) because she has developed one over the last 5 years.  But even on those nights she puts him to bed, 90% of the time, he wakes looking for us or hears us when we get home and is awake. 

Yes, we have read the books that suggest this is a horrible way to "teach" good sleep patterns.  I could write my own book on it.  We have tried all the "sleep" tricks and this at the moment works for our family. 

Our child is a light sleeper.  Any outside noise and often inside noises that are different, wake him.  TO TOTAL ALERT, wide awake, ready to start the day.  (Surely you have read one or two blogs about Espen waking at 3am and staying up!??).  It doesn't matter if it is 11pm or 3am.  If he is up, he is UP!  He won't be sleepy, struggling to stay awake, he will be FULLY AWAKE. 

Once awake, our child will rarely go back to sleep.  Nor will he quietly lay in bed.  He likes someone to be awake with him and to play.  He may like to eat.  He often wants to take a bath.  Yes in the middle of the night.  Time means little to him. 

Our child is a runner.  Our house is secure beyond imagination every night.  Doors with 3 locks and alarms.  Windows with extra barriers.  It is a fortress.  He is not mean spirited about running away.  He just is uber curious and lacks the ability to remember when is an appropriate time to leave and that we should tell mom before we go.  He lives in his mind and sometimes that does not mean speaking out loud.

Our child rises early and quietly.  He can quickly find trouble.  He doesn't ask, he just does.  We keep the medication and matches locked in a gun safe.  We don't have typical household cleaners, we buy ones that are kid & dog friendly, and even then they are up above the washer out of reach.  The liquor is out of sight and stored tight.   

This is the way we live.  It is not the way of all families.  We understand and recognize that.  But it is our way. 

I know, you still have your doubts and think he can handle a sleepover.  Because you know we travel.  Yes, we travel.  When we do, we know it is going to be exhausting. We plan things as much as we can.  We take bedding from home so the smell is the same.  We adjust ourselves so we are ready.  Espen has to see, touch and smell his way around a new location.  New sights, sounds, textures, smells.  He has to explore and find comfort with it all before he can calm down.  And even then, his mind is afire with sensory overload and he is restless. 

Hotels are better then relatives homes typically.  There is a sameness in each and every hotel across America. With one door in, we can "secure" the room more easily.  We stay where there is a pool and we can swim until he is worn down.  When we stay with relatives, we can get very tired very quickly.  His environment is changed and he is off.  Out of balance.  Sensory overloaded. 

We politely decline.  Not for just our peace of mind but for your peace.  Most importantly, we decline for Espen. 

And it is OK. 

Muddy fun in Winter

It is January 17, 2015.  It was 50 degrees for a short time today.  We enjoyed as much outside time as possible!  Just when I think ~ man we have this crazy crap under control, we are finally able to manage our sensory needs.... THIS HAPPENS.

We had gone outside when the wind picked up to fly a kite.  I had a really great one that we have had since before we got married that folded into a small bag.  The kite was the coolest.  So we were letting the gusts of wind pop it in the air.  And SNAP...the string broke.  We almost had it and a gust swooshed it into a neighbors tree and we are unable to retrieve it.  It will whip around for a long time I imagine. 

Then Espen decided to JUMP into this mud hole.  I had torn up my front flower bed before the weather changed and the ground froze.  So there are holes along the front of the house that are shaded and sloshy with mud!  (This is my spring project ~ to re-do the flower bed/front). 

Super quickly he goes from jumping in the mud hole to smearing it on his face and before I can stop him, he is laying in the hole.  In the new coat and shoes I might add. 

I was wearing flip flops ~ because it had been sunny and 50!  Because I have my toes nicely painted and because I miss the summer sun!!  Needless to say, I was not in the mood to run away from a mud covered child who decided to chase me.  Yet I did because I did not want mud on me! 

Doug was throwing snowballs at him.  Yes because that is how we do it. 

We let him play in the muddy mess and run around the front yard covered in mud for a good 30 minutes.  There are plenty of witnesses to the crazy that happens here, folks drive by all the time, we live on a corner!  He was happy, laughing and generally just having a blast.  The muddy mess doesn't even bother me.  We are used having him undress in the garage and shower downstairs.  We are used to getting the mud (or other messy substance) off of clothes, shoes and child.

It happens fast.  The loosing control of NORMAL.  We are constantly on the verge of perfecting NORMAL behaviors and then quickly we deteriorate!   It is not because we are lazy or lack discipline.  This constant need for strange "release" of energy is how Espen has always been.  Look back at my blog the last 5 years ~ you will see a pattern!


This need for messy, gross motor explosions is a complete immersion in sensory sensations... He all at once feels the cold, wet mud.  His shoes get heavy.  His pants were droopy.  (Not to mention, they were on backwards all day!).  The cold wind blew that wet mud dry quickly on his hands and face, and he felt it crust.  The sound of the mud sloshing and splatting on him and the side of the house pleased him.  The smell of the earth, because believe me, he lay there smelling the smells of mud and grass and snow.  It was slippery and fun.  As weird as it is, THIS is happy for Espen.  This moment when he can feel, smell, touch all of it.  How do you stop that?! 

I could easily stop it.  I can have more rules.  I can get mad.  I can use time out or other corrective measures.... but this is what calms my kid and "resets" him for a while longer.  I allow him to just be who he is in the space he is in.  And today the space was that mud hole.

The medication helps with his behavior folks.  It makes him feel less wiggly and better able to focus on tasks at hand.  The medication is for ADHD.  It does not take away his sensory needs.  Imagine the stress I put him under when we  had been awake since 6:30am, gone to Cabella's, picked up from the food co-op, gotten dog food and watched the weather change pretty dramatically.  Think of the sensory input from those outings. 

This muddy messy play got him back to a place in himself that felt right.  This is self driven sensory input.  This makes him work.  It has for 5 years.  Before I had a name for any of it, I knew he was messy beyond the typical child.  I can recognize his need for this seemingly out of control extreme mess. 

This is who we are.  This is how we roll.  This is the mess you will often encounter if you see us outside.  It is why play clothes are so important here!  Espen won't be able to make this kind of mess as he gets older.  Perhaps it is why he is driven to the "messy, loud, dirty sports" like monster trucks, mud runs and dirt bikes ~ he can acceptably be dirty!  For now however, this does him good, calms him, makes him smile and laugh like crazy and it is all washable! 

I guess we don't have the sensory diet under control ~ we are just as wildy crazy as we were, just less often! 

(Yes the coat, pants and shoes are totally clean ~ no mud stains or anything!).