The Christmas list 2014

Every year I write about great gifts for my super sensory kid.  Like so many families with a different needs child, it is simply really hard to buy gifts for us.  It is hard for me to "make a list" because what is on it you may not really want to buy.  But believe me.... it would be helpful & appreciated! 

Here are my hints for this year...

Cliff Bar high protein kids granola bar (chocolate chip mint flavor is his FAVORITE). Pecans.  Organic high protein milkshakes.  Because his diet is so wonky, we buy these OFTEN. (Whole Foods gift card!)

Memberships.  Zoo, children's museum, national park pass or pool.  We go when we can, for as long as we can.  We utilize them.

Pay for his therapy, doctor or medication.  We spend minimal $55 a week on just these things.  It never stops. 

Amazon, iTunes and Target gift cards.  My child loves books and we purchase educational games on the ipad for him.  He can manage to shop by himself at Target and not enter a meltdown.

I know.... something he can unwrap because there is so much about that.... Our house is littered with things he rarely plays with.  He is not a child that sits quietly and plays alone with something.  He dumps everything out and then wants to go outside.  It is just how he plays. 

Outside things - he REALLY wants a collar for his bike.  This gadget allows the handle bars to spin without jacking up the brake line.  Ramps, half pipe, etc....  A racing helmet. 

Hot Wheel cars & tracks. He especially loves the motorcycle line.

Interesting games.  That help him manipulate fine motor or gross motor or word recognition. 

Flashlights. 

Legos.   

Science experiment type kits.  He loves to see how things work.  He is curious about simple experiments he can do himself. 

Play doh, watercolor paint, finger paint, white paper.

Clothing is rarely a good idea.  He wears a very limited wardrobe.  Because he is sensitive to tags and seams and doesn't do buttons or zippers well enough to have independence (which he craves).  He wears hand me downs more then not because they are already broken in.  And I assure you when he unwraps clothing he is not impressed or even happy.  He just doesn't care.

Anything that smells is a bad idea.  We use the same soap, shampoo, toothpaste, lotion and laundry detergent. We don't mix it up.  We don't use scented lotions.  It drives him mad.  Stuffing his stocking with smells will make him overloaded.

There is so much about a gift that my child just doesn't get.  I assure you we are training him to say "THANK YOU".  It is an ongoing process ~ one we will grow into eventually in our own way. 

Alone again

On Tuesday I subjected my beautiful child to yet another long evaluation.  We had worked hard with a doctors referral to get an evaluation at the leading Autism Diagnostic Center in Nebraska.  A 5 hour appointment with speech / language, psychiatry and autism screening assessments.  We walked away with a report of "your son has quirky behaviors but nothing that falls on the autism spectrum".  Really QUIRKY?  Is that official language?  And what in the hell should I do with that....

I can assure you hearing that my son is a "normal" little boy is not exactly comforting.  Nor is it helpful in any regard.  I can assure you that we live differently and have for 5 years.  We have learned to make it work and to make concessions.  The things we deal with on a daily basis take "normal" to a whole new level.  But for our family THIS IS HOW WE LIVE.... and few understand it or are able to relate to it.

What now you may ask??  We have decided no more appointments.  No more.  We have the medication and we will continue to go for medication management.  But we are not going to see a behavioral therapist or psychiatrist or psychologist with him.  We are going to read some books.  We are going to keep pressing him into activities he excels at.  We are going to wing it.  We will do what works and when it doesn't, we will figure something else out.  Just the 3 of us.  And when that stops being effective, we will search for some answers or some help from professionals. 

Because what happened is that my beautiful son wanted to know what is wrong with him.  He wanted details about ADHD, autism and ODD.  He wanted to know if he was broken or sick.  He wanted to know why we leave school to go see so many doctors.  He wanted to know if he was going to be ok. 

So after this last assessment and hearing he has "quirky" behaviors and answering a million questions from a 5 year old about what is wrong with him I knew we were done.  Because really at the end of the day, we 3 still live in this house, in this environment with the behaviors.  We never get away from them.  We are the ones who work on training him to look at us, not run off, stay out of the street, not eat weird things, use a fork, use the toilet, to be gentle with pets and people.... our needs are different then a typical families but at the end of the day, we are the ones who do the work and get the rewards with our son.  No amount of education or degrees would prepare anyone for what we experience and face. 

My little boy is perfect.  What ever happens it is because of how we teach him and the support we give him.  He is not sick or broken or wrong in any way.  He is wildly entertaining on most occasions but not sick.

For a few weeks I felt like YEA SOMEONE FINALLY LISTENED TO MY TALES AND NOTICES THAT WE ARE LIVING IN A STRANGE WAY AND WE WILL FINALLY GET HELP FOR THE THINGS WE DON'T UNDERSTAND HOW TO CHANGE.... and now I think we are still in it alone and perhaps it is the way it should be. 

I will continue to share our experiences, struggles and joys.  Because often they are humorous and unbelievable!  But because somewhere there is a mom like me who is just starting off with and she is going to struggle and I know what that is like.  Believe me... I KNOW.  And one of you may read this blog and share it with her and she will for just that moment feel like she is not alone... it is all I can do... pass on my experiences and keep moving....

Halloween Rules

It is once again the time of year when I start preparing Espen for Halloween.  I'd love to say we can just put on a costume and go door to door and reap the rewards of that exciting activity!  But not so much.  So 30 days before the big night I have started the prepping.  Here are our 6 rules (in no particular order) we have memorized them and often practice...

#1.... Only knock or ring bell ONE time then step back 3 steps.   Espen likes to keep on knocking or ringing until the home owner shows up.  He has been known to stand so close to the door that they can not open it.  It is bad manners to keep announcing oneself at the door but he is so excited to see them and collect and show what he has.  Each house is a brand new person to dazzle.  We remind him before each house so that he can remember. 

#2.... DO NOT GO IN THE HOUSE WHEN THE DOOR OPENS.  Indeed this is perhaps the most important rule we have at this time of year (and every day).  He has no boundaries and when the door opens, he darts inside and is "lost" to my voice until he has satisfied his need to know.  Violating this rule ends trick or treating immediately.  It is a matter of safety and we can not continue to have fun if we stop listening to mommy.

#3.... Do not eat it unless mom or dad has looked at it.... Last year he was given some non-edible items (erasers, small puzzles, stickers) and some of them look like candy.  We have to be sure what he eats is actually food.  He won't typically eat much candy and after the big excitement of the night we trade candy for cash so he can go shopping.  But he can not just open and eat anything. 

#4.... Just say THANK YOU... no matter what they give you.  No matter what.  My child is verbal and just says it.  So constant reminder to just be thankful for what he is given and not debate, complain, ask for or comment about disliking it is necessary. 

#5.... Stay on the sidewalks.  There is no reason to run in the street and no reason to run over peoples flower beds to get to the door.  Stay on the sidewalk.  Even with all the excitement he can do this.   

#6.... Stay with mom and dad.  It is so exciting and so out of normal routines to go out and knock on doors and get stuff.  It is THRILLING.  He is a runner.  He has to stay with us.  He is not allowed to run off.  Violating this also results in termination of the fun.  We have lost him once while trick or treating and we will not do it again. 

So we practice and we talk about the rules and we warn some of our neighbors that we are practicing. 

The importance of participating in an activity like trick or treating is huge!  Even if we have to talk about it at length for the next 30 days, the skills are important.  The ability to participate in normal societal activities is important.  We will continue to work on our rules and if we come by your house, please be patient with us! 

Thirty days

We are 30 days into the medication.  We have changed it once and increased the dose once.  I am not resting any easier with it but Espen may be. 

Yesterday the teacher told me he is more focused and attentive.  This makes my heart happy.  If the medication does nothing but allow him to be present at school I will accept it... because he has not been present mentally....

I have made calls and we will have a screening at the Autism Diagnostic Clinic... we will see where we are at and where we go. 

Espen is signed up for swim club and will swim in a competition on October 12...  I am proud of him.  But it is not easy...he goofs a lot in the water.  He prefers to be submerged and that is no way to swim breaststroke!  But being submerged calms him so I am ok to sit and let him be underwater like a shark!

He is signed up to bike... he loves his bike.  Omaha BMX and recycle bike store has been amazing and full of great information.  He loves to go to NOWEAR compound and ride with the big kids.  He is roughly on the edge of dangerous.  But we will invest and encourage because it is what makes him happy and we can leverage this activity to our benefit. 

It is with these activities that I think he will be able to just be "accepted" for Espen... no one takes mention or note of the quirky way he behaves.  It makes me so happy to see the joy in him when he is doing an activity he thrives at.  And it makes the complaints about how hard school is easier because I can re-direct him to one of these fun activities! 

We have a long road ahead... and hard hard days ... but today the sun is shining and tonight we watch our 5 year old race his bike.... and we are OK with whatever happens next. 

Let me tell you the diagnosis got longer....

Where do I even begin?  For 5 years I have lamented on the trials and tribulations and utter joy in my life.  We have experienced things in our family that no one admits to.  I have blogged about many of them.  From the poop massacres to the trip to the emergency room after swallowing dog seizure medication ~ Tonight before bedtime I discovered a HOLE in his bedroom wall where he pulled the wallpaper off and dug a hole with his finger in the drywall... just this morning because he needed to see what was behind the paper.... It never stops!  I have shared the really hard and the mildly funny.  I have been honest about the insanely wild and freaky scary.  I have humorously shared the funny moments and I have cried while deciding to share others.  Tonight I told Espen I was going to write a blog about our day and he said "it would start with the naughty and be very humorous because we laughed a lot today then it would go back to the naughty naughty because I made a bad mistake at school and then it would be lovey dovey give me a kiss mamma".... I guess he knows. 

For 5 years we managed.  We dealt.  We coped.  We succeeded.  We cheered.  We figured out one thing and then were handed another to deal with.  It never stops.  Never.  Our life never stops.  It is always wildly exciting (sometimes not so great but exciting).  We told the truth about our lives to anyone who would listen and at every single pediatricians appointment.  We asked for help only to be told mommy was high strung and should relax.  We asked some more.  We sought behavioral counseling, occupational therapy, speech therapy.  We asked for more help and got into special pre-school.  We sought more help this last summer and what came as no surprise to us was a diagnosis of ADHD and Oppositional Defiance.  If you need to know what ADHD is like I would encourage you to read these words because they are powerful and give a clear picture to someone who may not understand what living with my child is like.   We went to the professionals and with many sleepless nights and crying (on my part) we decided to medicate him.  And still just that diagnosis was not right.  Yes it certainly fits and answers some questions about our beautiful child.  But it left me with many more unanswered questions.   We saw we needed more help. 

This lead us to a behavioral pediatrician.  One who has been doing this for 30 years.  He gathered information from every place we have ever taken Espen before meeting with us.  We completed screenings on everything from anxiety to autism.  The teachers at the school, the therapists ~ they all helped.  We then had a long appointment. 

It has been a week now.  I have needed that much time to digest and process what I heard.  I needed that time to call the doctor back and ask more questions.  I needed that time to work out what I felt.  I needed the time to cry and be mad and wonder if maybe this professional is wrong.  So I called another professional.  She agreed with the pediatrician and invited me to continue asking the questions about everything they say.

Not only will we be faced with understanding ADHD and oppositional defiance in our 5 year old but we must also open our hearts and minds to understanding autism.  High functioning autism as the official report says.  And we will understand and manage and deal with these for the rest of our lives. 

Not what I expected at all, but it explains some things and fits in some ways. The diagnosis helps us understand why he struggles to look at me ever, why he communicates in amazing ways with adults but not so well with children, why he grasps information and repeats it verbatim, why changes in environment drive him mad, why he takes things so literally, why he lacks empathy, why he interrupts to talk about himself, why his social skills are extremely lagging, why he remembers with amazing clarity and detail directions or moments and a host of other things.  It helps to explain some weird behaviors we have dealt with for years and we managed them.  It helps to explain our on going struggles with some things.  When I said a few months ago "Espen is not mean or naughty, he lives in his mind and I can't reach him sometimes"... I was right.  When my sister said a few years ago that she thought I should investigate Asperger's or autism & I got upset, she was right...  None of the diagnosis explain pain tolerance, his amazing physical abilities, that he is funny, he tells amazing stories and imagines things that are so creative.  But we may be closer to unlocking some doors to understanding our son. 

What do we do now?  We keep at it.  We get our bearings, read a lot of information, ask people, visit with new people, sign up for supportive things, get an IEP at the school, prepare our son for hard things like kindergarten!  We invest money in things he excels at, sign him up for bike clubs and racing and swim. We let him try what appeals to him.  We put him near people who accept that he can do things like big kids. We build a team around him that can make the social problems easier, that won't call him naughty or bad when he has meltdowns, that accept that he must smell them or touch them to understand them.  We challenge him and we accept the limitations. 

We also can talk about the diagnosis.  We can talk about what it is like to live in this way.  We can talk about what it is like (as we understand it) for Espen at certain moments.  We can share our experiences.

High functioning autism, like ADHD and the medication, are tools in our box.  It is a piece to the puzzle (if you will) that makes up our son.  Some days we will GET it and some days are going to be a giant swirling black hole full of fear and frustration.  Some days we still won't have all the right tools and those days are going to be just as hard as before we knew. 

One thing is certain.... We love this little boy to the moon and back... and nothing will stop our loving support for his future. 

Today I medicated my child.

Today I medicated my child.  It was not a decision I made lightly.

I cried.  A lot. 

Our meeting with the child psychiatrist was the hardest meeting I have yet to be to.  We talked for 2 hours about Espen's needs, quirks, meltdowns, hyperactivity, problems and strengths.  She quickly got to the heart of many issues and wasted no time in letting me feel heard and understood. 

Finally after having first been heard at PTC when we started occupational therapy. 

My beautiful little boy has ADHD/ hyperactivity/impulsivity/ oppositional defiance as well as Sensory Processing Disorder and may be on the cusp of some anxiety type concerns.  We are going to screen him for a spectrum disorder, sleep disorder and other behavioral issues. 

Imagine my grief and anger at having ASKED the right questions and pushed for things with the pediatrician and nothing happened for him.  Imagine my disbelief when I was able to just feel heard.  Imagine my heartache when I realized I could have perhaps found her sooner.  I am his best advocate and I ask and seek many services for him.  But I also learned how to best manage his quirks and we just rolled with it.  I tried all summer to find the right place and today I am some steps closer. 

I assure you my life with my 5 year old resembles your life and 5 year old, but ours is EXTREME.  In many ways.  I can give an example:  After this long appointment, we had 2 errands.  Second one was Target to get the prescription.  He rolled on the floor for most of the shopping experience.  I let him.  I knew he had reached his max and he was not hurting anyone.  Besides we had to wait for it or come back.  Once home and fed I gave him this new prescription.  He wanted to build a fire.  Ok.  Random but we did it.  With supervision, he played in the fire with sticks for nearly 2 hours.  Then he decided to eat a worm.  And explain to me that it was no more mean to eat the worm then using it to fish (he had me there).  Then we played motor cross.  While playing I had to explain "diabolical" because he had been using it almost all day.  Once he learned the simplest meaning, he continued to use it.  So we had a "diabolical" dinner.  Finally after dinner we spent over an hour jumping on the trampoline and telling silly stories.  I assure you at 9 when he went to bed, nearly by force, he was not ready to.  He could outlast me.  In between all this was a ton of chatter.  Some video games.  A few episodes of Kung Fu Panda.  He climbed a tree and caught a katydid.  He went INSIDE the neighbors house with said bug and dirty shoes totally uninvited.  And he periodically tried to convince me he does NOT need to go to school tomorrow.  I cleaned the kitchen floor twice.  I did laundry.  I made meals.  I answered more weird questions than GOGGLE did.  I said be sure pee stays in the toilet, pull your pants up and get your finger out of your nose so many times today I feel like a broken record.  My clothes are just as dirty as his are because he touches me all day with messy hands.  And I am loved.  Because he tells me so.  My life is a daily episode of PARENTING IN THE EXTREME!

So as I sat there with the psychiatrist I resisted medication.  I resisted it because I am not ready.  I resisted because I can try to be better mom, healthier cook, more involved... I resisted because he is 5 and I don't want a life of weird medication for him.  I resisted until she said "his brain is just not going to make the things it needs no matter how hard you try for him.  He will struggle.  He may do great or he may fail.  But his brain is missing some ability to regulate or provide and this is a way to help him."..... She assured me we are not going to just give up and medicate, we are going to work to resolve some concerns.  And she will work with us, PTC, school and that makes it better for me. 

I cried. 

So we came home with the most easy dose for me to control and the minimal amount possible.  I gave it to him through my tears.  I explained to him what was and what it should do.  He eagerly swallowed it.  Nearly 2 hours later, while sitting calmly with me and playing with sticks in the fire he said "Mom, I feel calm".... I cried some more. 

So tomorrow we venture on to school with this new "tool" in our resource box.  It is not the solvent for all our problems.  It is merely a tool. 

I can guarantee you, I will cry. 

Kindergarten FOR REAL

Espen stared Kindergarten FOR REAL!  After all the work we did this summer to try to level off his behavior we failed to find the solutions before school started.  So we keep working every day.  We have good times and bad and know that the teacher and staff at the school are helping and working with the therapist and me to find ways to make it better.  I know it is hard when she has 20 other kids to manage and I appreciate her efforts and compassion with my child. 

It is SO incredibly lonely at the house all day.  Every day for the last 5 years I have had one little boy to listen to and talk to.  I have spent countless hours playing and going places.  I have cleaned up and made messes with him.  He has been my helper and my shadow. 

It is now quiet.  The house is empty and quiet for 7 hours each day.  He gets home and needs some "down time" and I give it to him.  It is incredibly hard not knowing what my child does all day.  If he is kind and gentle or a wild buffalo.  It is sad not seeing his triumphs and amazing smile at the successes.  It is quiet not listening to the million questions and little boy chatter.  Honestly it sucks. 

It is harder yet because my child has not the ability to actually tell me what happened in his day.  I hear nothing about the whole day.  His recall is oddly not present.  I can get a few tidbits from the teacher before we leave the school but for the most part I do not get anything.  EXCEPT amazing stories.  Espen is quite a story teller and he concocts these amazing stories.  So I hear about grand adventures that I know are false but it is what he decides to share with me.  Rarely I get a few facts about his day but they come in the most bizarre ways that I am not sure.  It is a weird household!

Maybe for now I have to be satisfied with that.  Maybe he spends his whole day keeping it together and quiet that when he sees me he just must fall into the land of creative and entertain me with his imaginary adventures.  Maybe it is how he is.  Maybe just one day he will tell me something real about his day.  

For now I hug him like crazy when he lets me.  I play or sit or cuddle when he is ready.  And I am thankful for the last 5 years because it is how we got to this point.  But I really miss him......

No answers

Appointment after appointment and still I sit here with nothing. 

We are 2 weeks away from kindergarten and I spent all summer making calls, going to appointments and completing assessments.  We are now completing and autism screening and an anxiety assessment.  And set up to see the next doctor. 

My child is perfectly happy in the quiet, structured(ish) environment at home.  He rarely has accidents and can be completely managed.  Certainly we have our share of freak behaviors but generally he is calm and not overstimulated.  Take him anyplace different and he immediately gets into overdrive and turns quickly into some type of crazed child.  His behavior often results in weird things happening!

I spend energy and time being fearful of the next step in his little journey ~ kindergarten.  I am not sure it is the right step at the right time and yet I have no other answers.  I am concerned that I won't have the strength to keep calm and face each day with the energy needed to help him get through.  If it is a daily struggle, he will never feel calm enough to actually enjoy the experience of school.  And more then anything, I want him to have the joy of learning and making friends.... right now, I just have gut wrenching fear that it is all going to be to much and we will have a cloud of trouble over us. 

Yet I face each day with an optimistic smile and set about to make contact, follow through with our "sensory diet" at home and make each experience the best it can be given the circumstances.  It is all I can do.....

Grief

Last week I knew something had gone terribly wrong at the house across the street.  I knew.  It was a mothers knowledge that heard the sobbing, saw the tight hugs and the look of utter despair.  It was the "Texas" in me that saw the food being dropped off after the hugs and I knew something had happened that shook the family who has quietly lived across the street from us for 4 years.

As we played outside and loved on our son, I discovered she lost her 24 year old son.  He was there one day and horribly gone the next.  The sobbing and hugging brought Espen to ask many questions. 

We have known for some time that Espen lacks empathy and sympathy.  He does not have a real grasp for understanding pain or grief or hurt.  His high pain tolerance is partly to blame.  He can understand what pain feels like and just thinks everyone "feels" the way he does.  His brain doesn't connect with the understanding of grief.  We have been trying to explain and train him to understand these hard concepts that do not come naturally. 

It was a moment when we were all in the truck heading someplace that he saw a large group of people standing in front of the house across the street dressed nicely (heading to funeral) that he asked me why people feel sad when someone dies.  The smile on his face shocked me, yet I realized he simply was not understanding.  I tried to explain how mommy would be so sad if something happened to him and that when someone dies they are just in our memories and it makes people miss them.  He looked right at me and said "Mom, I just don't get it".  He looked out the window and that was the end of the discussion.  And not only did he admit he did not get it, he was done talking about it.  It has never been mentioned again.

But I think about it. 

I do not know if my child will ever understand death, pain, grief or sadness.  I do not know if he will understand empathy or sympathy.  The world is full of strange and terrible things that make us generally feel some emotion.  As well, there are many moments of utter bliss.  I only can hope that I handle these emotions appropriately and that he can see and feel me experience them.  His intuition and sense about mommy may be enough for now to help him garner a small bit of knowledge about these emotions.  No matter what the feeling, I wish someday he can feel it and understand it. 

Today however, I know about grief and a mothers loss.... and I hugged him to me. 

The six things to know about my son

There is not a parent manual.  To bad.  I could use one!  It would most likely not cover what I want to know about.

I want to know what to do next for my son.  I want to know when we can get a "break" in understanding behaviors and changes.  I want to know how to best advise the teachers and friends when something goes terribly wrong.  I want to know how we can explain to family and friends the odd things we deal with.  None of this will be in a manual. And oddly not many will have to deal with it so it will be hard to understand.  

Without a manual, we have decided to reach out to the next professional for some guidance and help.  We struggle along as best we can with the resources we have, the books I read, the therapy we have at home and at therapy gym until we reach that point when we know we need something else.  We don't search for medication but we search for help.  For a place that gets our child and can open a door for us to help him. 

Without a manual, these are six the things we manage to deal with.  These are the six things I am an expert at.  These are the six behaviors I understand and that are for our family "the norm".  These are the six things about my child I want you to understand.... And these are the six things we are seeking professional help with. 

My child is strongly and strangely sensory driven.  On a typical day he licks, smells, eats, touches, chews and listens to things I never dream of.  Things I never even pay attention to!  I have to say often "do not eat it if I didn't give it to you" or "we don't eat weird things we find" or "I am so sorry I do not hear or smell what you do" or "mom has old ears and they don't work like yours do, tell me what you hear".  We often just ignore it when he licks things.  We often carry noise reduction head phones for when places get loud.  We have gum so he can keep his mouth busy.  We accept that he needs to touch things to understand them and the place they have in the world.  Imagine school with a classroom of children who use different soaps or teachers who wear perfume.  Imagine the sounds from other rooms or the hallway (he can hear better and more acutely then we imagine).  Imagine the loud places like the gym and the lunchroom.  Imagine his curiosity with wanting to feel textures and children.  In order to make sense of his world, he has to feel it with his whole body.  I have allowed it and now he has to fit into what "society" thinks is normal behavior ~ and he can't lick, touch and smell everything all the time. 

My child never feels hungry.  We often have to bribe him to eat.  Not because he is picky.  He just never feels hungry and if you are not feeling it, it is really hard to put food in the mouth.  If my child doesn't eat TERRIBLE bad things may happen.  His little body will be all out of whack and he may not be in the best of control.  He throws his lunch away nearly every day, is so excited to be home he can not stop for a snack and fights the notion of dinner.  But will often wake hungry and recognize it (at 3am) and ask for a granola bar.  We always feed him.  Imagine a whole day with little nutrition and how that will impact a small child.   

My child is incredibly strong.  So strong he can do amazing and terrifying stunts.  His strength leads to ability to run at full speed for long periods of time.  His strength and lack of fear lead him to things he imagines to be safe.  His strength also often causes "accidents" to happen.  He won't recognize how strong he is when he bumps or jumps or crashes into someone at full speed.  He is drawn to play with bigger children who have the same ability he has.  This poses its own challenges.  His strength leads us to interesting activities and sports that few families do with smaller children.  His ability lets us stay outside participating in things much longer then others are able to.

My child rarely understands pain.  He can fall off a moving bike and get up, give me a thumbs up and keep riding.  He can fall out of a tree or off the top of the playground and never even stop.  He can have the wind knocked out of himself and just stand up and keep going.  It is amazing and terrible.  Because he rarely feels pain he has an incredibly hard time understanding the pain your child feels.  He does not grasp that his out of balance wildly erratic movements can inflict pain on others and why they cry and stop playing.  He can not grasp the notion of pain.  It is a giant problem we address every day.

My child is anxious about changes and nervous about patterns being out of order.  I am not a very structured person.  I decide to do things randomly.  Yet my home is pretty orderly.  It is a messy chaos.  Should I decide to put on a new comforter or rearrange the toy bins my child has worry written all over him.  If you close the shower door "wrong" he has to change it.  If you don't put the car in the driveway in the middle he freaks out.  If you drive to the school a different route it throws him off.  Imagine this child now in a public school where there is structure but he can't understand the patterns or predict what happens or where things go.  His anxiety and nervousness are buzzing in him and he is chewing his clothes, clinging, grumping around and sleeping with us again.  Imagine school with so many changes right now.  From a few hours to a full day, to changing bulletin boards and transition times between things.  Imagine if things are not exactly where he left them from time to time. 

My child has little impulse control.  It is not something he understands or grasps.  He darts into the street, he climbs tall places, he swims to deep depths, he takes things that don't belong to him, he says things he creatively made up, he touches things randomly.  His impulse control is grossly under developed.  Because I have one child and we are home together, I can manage those impulses.  Imagine him at school when he has to manage those impulses on his own.  Or he doesn't.  He will take it if he sees it, touch it if he can, climb it, run without stopping.  The worst part is that because he lacks impulse control, he will not understand that he has behaved irrationally or acted wrong or done something he should not have.  He won't grasp that.  He will not understand the consequence because he didn't' think his behavior was bad or wrong and he will do it again and again.  He has no control over the impulses.  For example, I must say 500 times a day to get out of the street and the reason why it is a problem it go in the street. I may take a bike away for the afternoon for riding in the street only to turn around and see him in the street on a different bike and then I have to explain why we do not go in the street at all, not just on a particular bike.  It happens daily.  The same conversation. 


Our lives are strangely challenging.  We find a place to be "normal" and we roll with it.  We cry and laugh.  We get dirty.  We jump and crash.  We eat at 3 in the morning.  We party like rock stars and we snuggle in the quiet cubby.  We pray every day that we are graced with the ability to manage the next day and we ask forgiveness when we can't.  We find friends we hope can understand and accept us and we understand when they can't.  We understand the need to ask for help.  We let this little boy get to the place he is supposed to be at the speed he is meant to get there and we help him along the way.  We try to make the best, most sound decisions for his benefit.  We love him and each other because at the end of the day it is what we can hold on to.

These six things are what make my beautiful child who he is.

Happy Mother's Day! ~ 2014

I am the mom of a very special child.  I am sure when you see him, you think he is no more special than any other child.  Yet to me he is. 

He is spoiled and smart.  He is funny and ridiculously clever.  He is incredibly strong and terribly courageous.  He is wildly imaginative and is never quiet or still.  He can ride a bike or scooter, swim a pool lap, dive to the deepest depths, climb tall trees.  He is often seen wearing a helmet, a costume, shin pads and just as often covered in water, mud or paint.  He has unruly curly hair and the brightest smile.  He is loud and fast.  He never wears shoes. 

My child smells things I don't smell, hears things I don't hear and imagines things I can't explain.  He disappears more often than not.  He can destroy things in a meltdown yet is kind and gentle when he is calm.  He is amazingly entertaining.  He can tie his shoes.  He can remember places and quotes that I never think to recall.  He rarely cries.  He is always active and loves the outside.  He can write his letters and numbers.  He does pushups and pull ups just like a solider.  He crashes and dashes and smashes!  He hugs, kisses and loves as passionately as he plays. 

All of this and none of this make him special.

What makes him special is that he is adopted and that every day I get to love him. 

Mother's Day is a special day.  It is the day I get to rejoice in being a mom to this incredible little boy.  It is also the day we met his birth mom.  She is a super hero in my book.  She loved him.  She is courageous and strong.  She gave me this special little boy.  This boy that drives me insanely crazy and then smothers me with squeezy hugs and wet kisses.  This little boy that calls me mom, snuggles in the bed in the mornings with me, climbs on my lap, holds my had.  This gift of my life.  She is the reason I know so much about being MOM, all things boy, sensory needs and rolling with it ~ because she gave me the gift of a little life. 

And how special is that!  He is special because he is mine.  He is special because he came from a woman who was brave and strong and fearless.  He is special because he is all of these things.  He is the reason I get to celebrate mother's day.... for me that is what makes all the hard days, the hard knocks, the hard education special.  It makes the dirty floors, the sticky tables, the piles of laundry feel right.  He makes me get up early and stay up late.  He makes me smile and cry.  He makes me want to be the best person I can be so that I can teach him to be the best he can be.  This is what mother's day is... a day to celebrate the gift of life and how special this one little boy is.... to me and to another.

Happy Mother's Day....

At this hard place

The last couple weeks have challenged me.  I was full of complaints.  I was gently and lovingly reminded that what we experience also happens in "normal" families.  While it is true, the need for friends, bad behaviors, school troubles all happen in "normal" families we experience extremes and I rarely hear of these things happening. 

So with that being said.... we are having a wildly weird and unsettling week.  From strange events and stories being told to us to even stranger activities happening on play dates we don't know what to do next. 

Let me start with how angry I am.  Angry that we constantly battle challenges and strange things only to figure it out and hit the next one.  We do not get a period of calm when we can relax and enjoy family life.  We jump from strange, weird, odd, mischievous, bewildering and back to strange.  I  am so used to unusual that it has become the 'norm' in our family.  I am so accustomed to bizarre things that I seldom flinch at it.  I am hardened against the judgments and stares when we have meltdowns and timeouts. 

I am also angry that whenever something goes bad or wrong and my child is involved I automatically assume it is because of something he has done or said.  I am quick to step in.  It is a HORRIBLE place to be in as a mom.  Constantly feeling like your child is "that bad kid"... the one that makes play or learning or seeing hard for every other child around him.  I am angry that I feel this way.  I do not want to assume my child is always at fault. 

So now we are at this place.  This place where I am faced with the most bizarre behavior yet.  The place where it is frightening and embarrassing to talk about.  The place where his behavior impacts other children.  It is humiliating and terrifying.  It makes me honestly want to pack up my house and move to a smaller, remote location and homeschool this child so that he can just get it together and be OK. 

But I tearfully face a new day.  With little sleep and more worry than one mom needs.  I think about what my reaction would be if it happened the other way.  I would not want to be my friend.  I would not want this child around.  And that makes me so very sad for him. 

I reached out to school and therapy for help.  I gently and as honestly as I can, talk about the issue with my child.  I sternly require him to comply with some rules of conduct.  Doug is involved and we face it together.  Today we face a new day.  But it is a new day with anger and frustration and fear attached to it.  A new day that we are faced with weird and wild things.  A day when I think "GIVE ME ONE DAY OF CALM....". 

The issue is that my curious, interested, smart, bright little boy exposed himself during a play date.  Age appropriate to be curious about the body and the workings of the body but not appropriate behavior.  Not appropriate to lie about it.  It is one of the hardest things I have yet had to handle.  It is an issue few will want to talk about.  I think we have to also talk about the hard things.

So while we are just like every other family, we are not.  We not only live life large and colorfully but we go hard and extreme.

I write a blog of hard truth.  It is not always the easy fun comfortable topics that I tell.  Today it is the hard and horrible.  Judge us if you must but trust that we are doing the best we can today.  I assure you, we will face this head on and we will move on.  One day at a time.... that is how we roll. 

Play can be so challenging

When I started blogging I was fairly anonymous.  I have shared the hardest parts of our lives, the freak accidents, the weird stories.  Life is an adventure and a journey for us and I share it.  I am not anonymous any more.  I know you may read this and then look me in the eye.  It is ok.  This is our journey!  Welcome to it... it is my life, it is exciting, it is hard and I invite you in. 

There are days when being a mom is incredibly hard, challenging and unforgiving.  I have been having my share of these days!  Last summer we faced trouble with classmates and neighbor kids. It was so randomly terrible to play with anyone that we had a backyard rule.  Then we met some great folks that we had some good times with who understood our kind of life!  He started school and did amazing at being a good friend.  The last 7 months we have seen giant changes in Espen's behavior and ability to play with children.  We have seen a huge increase in his desire to play and try.  And we have allowed him the opportunity to try. 

Yet here we are getting ready for summer and we already have concerns.  Concerns about who he plays with, the appropriateness of the parents, the age of the children.  It has been a challenging week.  After a complete accident I had to remove my child from the neighbors yard while listening to a child accuse him of being terrible.  I have had to defend rumors of him being a bully.  I have had to explain to him bully and mean and why he should not call himself these things. 

We had to put summer rules in place already....We won't be playing with the big kids who ride bikes in the street without helmets and traipse around the neighborhood unattended.  We won't be playing with children whose parents use horrible language around my son (he repeats it).  We won't be playing with kids who are continually mean.  We won't be off unsupervised all over the neighborhood.  It makes my summer hard because I have to always be that mom who says no we can't play, or no we can't go there.  As much as it seems like punishment, it is for the sanity of our family. 

And it starts already. 

Letting Go.... the hard parts

My little boy is soon to be 5.  A couple months ago he asked for a half pipe for his birthday.  He was told he could have one when he could ride his bike with out training wheels and without falling.  That was all it took for the determination to set in him.  We have 2 little boy bikes.  We took the trainers off the smallest of the bikes and let him get that balance.  On his own he discovered he could get speed going down a hill.  Then he asked to take the trainers off the bigger bike.  And to my wondrous eyes HE WAS RIDING HIS BIKE.  It happened so fast and with such determination.  All he asks for now is to ride his bike!  He has ridden in the sun, pouring rain and on a snowy day.  He rides fast and furious (like his life) and LOVES the speed of going down the hill.  There is nothing more frightening (besides loosing him) then seeing him flying at full speed down a steep hill and knowing he is not going to use his breaks or be able to stop. 

The hard part is letting go.  This is true of so many things.  For this momma today, the hard part is in not freaking out when he falls (and he falls).  Not stressing about the speed he whips down the hills.  Letting him go up and down the street without me.  Letting him fall and get back up.


Letting go so that he can find his way in the world.  In this one small way it is what I am doing.  I am letting go of the training wheels, letting go of his hand and sending him into the big world.  He is so determined to do it I know he will succeed.  Just like he has figured out how to ride his bike so quickly, he will learn how to do other things because of his determination. 

And just like crashing head first off his little bike, he will fall and crash.  I will always be right there.  I will take that quick prayer breath.  I will wait for his reaction.  And I will help him get back up on the bike to try again.  Or I will carry his bruised up little body home and then we will try again! 

But that letting go of him... that is the hard part.