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.