Early to rise.....

Imagine being sound asleep (like I am every morning) and hearing MOM, MOM.... .... MOOOOOOOMMMMMM....  Me dragging my self out of the bed ~ from dead sleep to dragging through the house.  Opening his bedroom door, rubbing sleep from my face, asking "what"... his simple and early reply "I am hungry and will you play with me"... 

DUDE... IT IS 6:45 IN THE MORNING.  "oh mom, did I wake you"... 

Imagine me doing a mental head slap.... 

Without fail, he wants 2 pieces of cinnamon toast and a banana shake.  Without fail he is eating before we are awake 20 minutes.  Without fail he is talking the entire time.  Asking me questions I am not awake enough to answer.  

This happens to me nearly every single morning.  Some few mornings I am shot with nerf darts, or sneaky man creeps up on me while I snooze or I hear large booming noises of a child jumping out of the bed and rolling through the house.  Any way he wakes me it is jarring.  And without fail he is asking for the same breakfast.  And he is ready to go.  

And my morning seamlessly goes into the day with loud volumes of silly needs.  Our day does not stop.  NEVER STOPS. 

I often lay in my bed at night and pray for a "normal" morning.  I hope for a child who sleeps in and wakes up easy, allowing me to ease into my day.  I envy those who have children who sleep soundly into the morning and then ease into their day.  I see children who softly wake, enjoy cartoons and leisurely breakfast... and I wish for that.  (Be thankful fellow moms who have easy mornings... ).  I am blessed instead every morning, like a shot gun start, to being INSTANTLY awakened and demanded to perform mom duties.  I am blessed to have a child who wakes up happy and hungry and ready to GO!  

As I lay down to sleep tonight, I am doing what I do every night... read and enjoy the quiet... and hope to sleep through the night, to awake in my own time! I lay here knowing  I better get to bed... It's going to be a staggering morning fixing cinnamon toast!! 

Early to bed... early to rise....

Miracle or Not

Today we are just nearly med free ~ 5mg of Focalin and some caffeine.  That is minimal compared to what we have been doing.

We got here after 2 very long terrible weeks.  We switched to a new ADHD medicine, started it May 27.  By May 28 I had contacted the doctor and he added more.  For the next 10 days we tried.  We tried really hard and tried to keep an open mind.  Our life was even harder than normally.

His impulses were all over.  He was unpredictable at best.  He was mean spirited and the line between impulses and just terrible behavior was blurred beyond recognition.  He nearly stopped eating.  He was sleeping about 4-6 hours a night.  It was taking Doug up to 3 hours a night to get Espen calm and asleep (it is a one man job and mommy never does it).  He was ON all the time.  I was having a hard time trusting when I took him some place we could handle it.  He was having terrible melt downs and I never saw them coming.  He was crashing into people and things.  He was chewing obsessively on his hands, toes and clothing (to destruction).  He was pulling out clumps of hair.  The safest place he has the most fun at, therapy, he was not managing and twice the therapist came out to tell me how rough and terrible it was for ONE HOUR.  It was extremely hard for me to pack the meds around with me in the heat.

We cried.  Complained.  Struggled.  Tried to "be cool" and normal.  Doug & I were tired and stressed.  We had very little time together because we were in constant management mode.... just managing one behavior after another.  Espen was OFF.  We could see he was tired and probably hungry.  He wanted to be good but nothing was lining up.

So I stopped.  Stopped giving him the medication.  It was the only thing we had changed (besides starting summer).  I eliminated the thing I suspected was the problem.

In 3 days he has had just 5 mg of Focalin and caffeine each day.  We have done very limited 'public' activities.  He is happy.  He has returned to sleeping 10-12 hours a night (which he desperately needs).  He is falling asleep within about 30 minutes.  He is not chewing on his hands, clothes or feet and the hair pulling has stopped.  He is impulsive but manageable.  I can predict how much time I have after giving him the 5 mg I have for grocery shopping or intense 'public' activities.   He has a giant appetite - one we have not seen for months.  He is mindful.

For a few days we are going to ride this out.  I am not going back to the medication that posed so many problems right now.  As we approach school time, we know we will need to boost him so that his mind can focus and his body and be still but I am not sure the new medication is the answer.

There is no miracle for ADHD.  There is no perfect solution that helps every day.  There are moments of perfection but those may be fleeting.  Often good moments are overlooked because we are so conditioned to manage bad behaviors and extreme impulsiveness.  We seek the answers from the professionals and pray it works.  There are no answers, with ADHD, there are only trials.  Each person responds differently.  Each medication interacts in each body uniquely.  We each have to make very hard impacting choices in regard to treating this wonky mental health issue ~ there are no right or wrong choices.  Medication in the most minimal sense while teaching and modeling good behaviors can only lead to success.... and a few hard days!

Being "enough" at bedtime....

Tonight it is one of those nights where it does not seem as if I am "enough"... I did not play enough, do enough and love enough.  I may have yelled enough and been frazzled enough but I don't feel like I am enough mom.

It happens at bed time that I feel this.  Because at bedtime all sort of holy hell breaks loose.

Sleep is a real struggle in our household.  I've blogged about it many times.  Of late it is even more challenging.  Espen has taken to just playing rough games with me when I try to read.  I have walked out, waited, yelled, bribed and nothing has helped ~ not even days of not reading have helped him discover what I mean.  And those days when I was firm and just walked out to not read, it takes a long time for him to fall asleep, and most typically, he wakes in the night (which means I am awake also).  It is becoming regular that our "routine" for getting him in bed takes over an hour.  This is after a shower and snack... this is just time in his room, in the bed ~ he fights sleep.  Over an hour each night one of us sits with him (usually it is Doug).  He pushes bedtime to past 9 most nights and I think he needs more sleep, not less.

Tonight I was not "enough" and just emotional which made me cry.  Hugging him close to me I cried.  He patted my hair and promised he would just try to be better and I assured him he is perfect the way he is.  I then explained in whispers through my tears, that mom is really having a hard time with bedtime.  He is perfect.  I cried because at that moment I just felt like I am not "enough".  And my beautiful son held on.  He held on to me and told me he just wants to stay home and hug me.  He held onto me and told me he does not like going anywhere, does not like school, does not like anything because it is all to much.  He held on and said he can not go to sleep because he has to be ready then for the next day.  He is 6 and he holds on to his day so he does not face the next one.

And that 6 year old little boys words just made me cry even more.  Because there I am not feeling like I am "enough" mom and he is wild because he doesn't want the day to end and he is stressed.  There must be a medium ground.  None of us need to feel at night that we are full of stress and angst.  We need to feel like we can face the morning and the night with some ease.  I felt my job was to teach him how to reach bedtime alone so he can be rested for any new life adventures... bedtime is not the demon, but the passage to what lies ahead.  And that is the problem... for my child, what lies ahead is the demon.

The struggle is real.  It is real hard.  This is real life and we will find a way and figure it out so that our bedtime and our morning is equally smooth in passing.  I'm "enough" ... I just have not found the right key for this door.

Hair cut day

Sometimes I reach that point where I am just so worried about my child and for the life of me I can't find a way around the problem we are living at the moment that I get consumed with "every single little thing".  I was at that point today.  The breaking point.  

The point of exhaustion and worry.  The point where you would rather withdraw from most things that face the weird things.  That point when gut wrenching fear for what is going on with your child overwhelms the little joy.  The point when you just can not see the forest for the trees.  I was there.  It just happens ~ we all break.

And then something tiny happened.  

Every day Espen's teacher and I brainstorm the "what next".  Because every day something new and huge and off happens and we have 7 weeks of school and we need him to settle into it again.  Today, she softly suggested that his wild and untamed hair is distracting him.  I took a deep breath and decided that I needed to get it cut because it is unkempt.  

Hair cuts are NO JOKE in our family.  We struggle with them.  Espen can not stand the electric clippers and we have never met anyone who will use scissors on his curls.  He does not like it to be combed EVER.  He is sensitive all the way around his head.  Hair cuts are a horrible thing that causes stress, fear and anxiety.  I comb it out morning or night but it is a mess of curls and has not been trimmed since the fall.  

We went to a new place on the way home.  I walked in with him, no appointment, no line.  Feeling strung out and dragging a child who was NOT GETTING HIS HAIR CUT.   

This stranger asked his name and invited him to her chair.  She sprayed him with water and used an amazing leave in conditioner to tame the tangles.  To my surprise she chatted calmly with him while quickly whipping out the tangles.  Then she grabbed her scissors and proceeded to trim his curls.  She was quiet, calm and fast.  She listened to his little boy chatter and interacted with him.  

She had no idea he is terrified of the clippers or that hair cuts are horrible for him.  I did not feel up for warning her today ~ we were already a mess walking in the door.  

I cried.  Because she was kind.  Because she had no idea that some days in this moms life the HARDEST things happen and we just deal.  I cried because she treated him like he mattered.  

I stood there and watched my son enjoy a hair cut for the first time in nearly 7 years.  I cried. 

Autism ( ) Month

April is a special month.  Everyone starts to feel like the end of winter and the beginning of something new is fast upon us.  A new fresh start.

It is also Autism (acceptance, awareness, education) Month.  It's important.  Not just to a bunch of families living it, but to the world.  I can not share the journey of everyone but I can share ours.  Our journey has been filled in 6 years with judging stares, snide comments and nonacceptance.  And I know, you look at my kid and you hear our stories and think NO WAY IS THAT FAMILY IMPACTED BY AUTISM.

The thing about autism is that each and every child is impacted differently.  We all may share some similarities, some experiences may sound or look the same at some point but how our children behave, learn, grow, experience, communicate is all different. Our experiences and journey is often marked by crazy meltdowns, serious hazards and hilarious accidents that most just have no idea of how to manage.  (Truth be told, none of us do either, but we have to figure them out).  So April is Autism Month.  What matters is that we accept the differences in families and teach our children to do the same.  

The short story for our family... Our beautiful child was adopted.  We arrived at the hospital 20 minutes after his beautiful birth mom delivered him and we have been his ever since.  I was so excited to be a mom, after waiting so many years and trying so many things to have a family.  I held him, carried him, spoiled him silly and never wondered or thought he was anything less than the perfect baby.  He was my gift and a miracle ~ nothing else mattered.

Because I was so clever, I taught him sign as a baby so verbal language delays never dawned on me ~ he spoke with sign and was very smart about it.  Other situations and experiences started to make me wonder about things. Weird things.  We failed at play dates with peers because he had no fear and was physically able to do daring things.  He was "rough" and lacked empathy resulting in moms not wanting their child to play with us.  He never looked at people directly (avoided eye contact).  He was a runner and would simply take off down the street (or in it).  We started to notice his lack of understanding of sarcasm, and his literal approach to the world.  I started to build our home life in a way that protected and secluded us so that we could play and be safe.  The outside world did not matter.

Our pediatrician repeatedly told me he was "normal" and I was the high strung one.  Yet our experiences were becoming more and more dangerous and frightening.  We were living in a fortress (locks & alarms because he ran), we had no social interactions, we could not take him shopping or to "normal" activities without meltdowns of wild proportions.  I was exhausted and terrified.  And honest in those early days I cleaned a mountain of poop off everything because it was the "thing" he did.  When he was 3 and I called poison control 2 times in a week, taking him to the hospital each time, we knew we needed other help. It was the straw that sent me in search of other answers.

I found some answers and help at a pediatric therapy center.  I walked in crying and they helped.  We found out quickly that our son has Sensory Processing Disorder.  It gave us some relief.  It is a lifted burden to have someone else notice your child is different.  We have been going to occupational therapy for 3 years now and it helps.  With them we first learned how to help with sensory stuff and then they helped with his ability to learn.  Therapy saved us!  It also gave us the ability to call the sensory needs to see past them to what came next.

When he entered kindergarten we knew.  We knew he played differently, had trouble focusing, was delayed.  We sought help from specialists and discovered he has ADHD, ODD, anxiety disorder traits and a formal diagnosis of High Functioning Autism (HFA).  And there we sat.  At age 5 our world suddenly changed.  Yet we were not upset ~ more of a relief flooded us.

It was like walking into a set of hidden doors and entering a world that looks exactly the same but is not.  We bought every book, joined a group, boosted therapy, told the school and shifted our way of thinking.  Some things we never understood about our son suddenly made sense and we knew we could teach him to manage in our society but that it was going to be incredible challenging, wrought with pit falls and problems.
HFA is Asperger's.  Asperger's impacts families in a myriad of ways....

• Problems with social skills: Children with Asperger's syndrome generally have difficulty interacting with others and often are awkward in social situations. They generally do not make friends easily. They have difficulty initiating and maintaining conversation.

• Eccentric or repetitive behaviors: Children with this condition may develop odd, repetitive movements, such as hand wringing or finger twisting.

• Unusual preoccupations or rituals: A child with Asperger's syndrome may develop rituals that he or she refuses to alter, such as getting dressed in a specific order.

• Communication difficulties: People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language. They also tend to have problems understanding language in context and are very literal in their use of language.

• Limited range of interests: A child with Asperger's syndrome may develop an intense, almost obsessive, interest in a few areas, such as sports schedules, weather, or maps.

• Coordination problems: The movements of children with Asperger's syndrome may seem clumsy or awkward.

• Skilled or talented: Many children with Asperger's syndrome are exceptionally talented or skilled in a particular area, such as music or math. ~ from: webmd 

We recognize these challenges in Espen.  We live them every single day.  We live life amazingly different.  I learn and see things through him and with him that I never imagined.  I had to let go of the image I carried of what parenting was and each and every day I learn to be in this place with this child.  This moment.  We live in it and we move on.  We do it very quickly.  Some days we fail miserably.

On the whole, because Espen manages to function within societal norms, I do a terrible job educating and advocating.  He manages because we expose him to every imaginable experience.  We do things, go places, participate in life within the world.  We talk and teach and explain REPEATEDLY.  We let him be as he is.  We ignore the ignorant stares and curious glances.  When the situation is right, we visit with strangers about the challenges of our family.  We quietly tell people life is how it is meant to be, but it is not always easy.  We don't hide.  We are strong and brave and full of life.

Autism Month for our family is important.  But this life is important all the time to us. This life where we learn new things and we find acceptance for and from all people.  The big lesson here... if I want you to accept our family, I should just accept yours and teach my child in the best way he can learn, to be kind.  Autism Month... Acceptance, Appreciation, Education, Awareness...

Learning and pimping... It ain't Easy....

I am an active parent.  I am protective, supportive, encouraging and super motivated to encourage him to be the best he can be and model that as best and as much as I can.  I do not rely on the school to teach my child.  I rely on them to support our family in his educational needs.  I seek outside professionals for important therapies that my child needs that will help him be able to learn.  Things he doesn't get at school or at home, I seek out for him because I recognize it is important.   I struggle along with him (and because of him) to engage his little mind in learning when I see the strain in his eyes, the taxing demand on his ability and the defeatist attitude he assumes.  Learning is not easy.

Let me repeat that ... Learning is not easy.  (Neither is pimping ~ have you heard that song recently?).
Especially when learning also requires you to sit relatively still, to listen and follow multi-level instructions, to follow along on worksheets that are busy while sitting in a classroom of peers, to be active and attentive for large portions of the day and do it all while fighting the noises, smells and movements of others as well as the deeply seated drive in your body to engage all your gross motors in wiggling, moving and generally fidgeting.  Learning is developing a building block, a foundation, for the next thing.

But what if that foundation kept crumbling and you had to fix it before you could add to it?  And what if it was hard to fix it because the pressure you put on it caused it to crack.  Or the tools you needed to use were so loud you had to find your headphones and while you were looking for them you lost your hammer so you had to look for that.  And when you had yourself together, you remembered you really had to go to the bathroom.  Finally, you are ready to fix the crack and move on to something else but now that crack has totally crumbled and you just throw the hammer at it and push it all the way down.  Now you can't add anything else to it because you have to start over. THAT is how my child is learning.  Some days it may just be a little crack while other days the whole side of the building caved in over night and it has to be fixed before we can add more to it.

That being said, I send him to school with the greatest teacher and all the "tools" I can afford for the success of his day.  I help him at home for long periods of time with reading and writing.  We engage every sense in every way to learn.  We try and we cry.  Because we believe his education is important.  I also engage my little guy in amazing extra activities based upon his interests and abilities.  I open doors for him to participate in programs and interact with peers so that he can learn and grow socially and emotionally as well as physically and educationally.  I encourage his uniqueness and his ability to make individual choices even when I disagree.  Learning takes place in more than just the school... it can take place on a field or at the roller rink.  And for us it often does.

And yet through all of my encouragement and support I am astutely aware of age and ability appropriateness.  Perhaps because I am so aware of our challenges and successes I am curiously just upset by a series of occurrences in which materials were brought home from school that (in my opinion) should not have been allowed.  I have tried to remove my self from the situation and see it from a different view.  I would still be curiously bothered.  Material not appropriate for a child at the age of 6 ~ but a child who struggles to read and learn.

The problem is that this is material HE was ALLOWED TO CHOOSE.  There is not a section or area of appropriate material for a 6 year old, or 8 year old or 12 year old. There is free choice.  And I do not disagree that children should have choice BUT I think some boundaries need to be put in place.  For curious reasons, the fact is that repeatedly my child has used his CHOICE and brought home materials that were not age appropriate, he has not the slightest ability to actually read and the reason he gives me is simply because he has free choice.  Because it has happened so frequently (more than the 3 books I have pictured here), I have oddly lost my patience with it.

I do not believe having this ability to choose these books promotes literature or reading.  It does not encourage my child to read.  And if I attempt to read these to him, he has no desire to listen because the content is also not engaging for a 6 year old.  Free choice for a child like mine opens up a whole new foundation problem (if we refer back to the building reference).  Free choice often means he will do what ever he can to push the limit of the boundary.  Like if I walk him down the candy isle and allow him to choose one candy he will scan the whole isle several times and choose the LARGEST bag/package even if he doesn't like it and want that one because it is his choice and he wants the biggest.  So free choice in selecting material to bring home is just about grabbing something that looks hard or is big and fat or heavy... these have all been reasons he gives me for bringing home the books.

The weirdness is that I am a pretty open minded mom... YET ~ I would not take him to a video store and allow him to purchase Grand Theft Auto.  Nor do I allow him to watch The Family Guy on tv.  Nor do I take him to see movies at the theater or home that are above his ability to understand and process.  Nor do we allow him to watch much news because the fact is so much murder and mayhem make him anxious.  Nor would I go to the public library and allow him to rent a book from the young adult section.  Sure he has the ABILITY to play, watch or look at all of these... but there is nothing appropriate about allowing him.  My feelings apply in regards to the materials he has brought home over the last 4 months.  It is just not ok.

I have spoken to the appropriate people.  I have spoken at length to my son.   And yet when he gets the chance the next time, he will do the same thing.  He is like that.  Maybe like my kind husband encourages ..  I should just stop letting it get to me ~ who cares it is just a book, you don't have to read it ~ is his attitude.  And now maybe I will.  I have done what I can and I can just leave them in the backpack and forge on.

** Please do not interpret this as an attack on anyone.  It is not.  Nor is it a picture of my relationship with anyone.  It is a situation that has gotten me all agitated and because generally the response is to tell me I am over reacting when I do not think so.  I just needed to cleanse my mind of this strange occurrence and THIS my friends is how I do it... Move on now people... **

My glued up life

In our house, the struggles for sleep are very real.  And often I complain and bemoan the fact that we operate on little sleep, weird sleep and no sleep.  For a parent like me, it is a fact of life.  If your child wakes occasionally with a nightmare or leg cramp ~ multiply that by 100 and you will understand how it works.  We are not faced with screaming or crying.  We are faced with alert activity levels.  Where your child may be up for 20 minutes or an hour even, mine will be up for HOURS.  He will be hungry, active and not have a care in the world about the time.  He has no sense of time.

I share these issues not for solutions.  Because it is curious.  Because it is important for several reasons... first because the struggle is REAL and not just ours.  We just share it.  Because if you are an educator, there are other children out there who may have similar night issues and run on different level of energy in the day.  Because ADHD, autism and a range of issues have disturbing sleep patterns and to understand you need to just hear that the struggle is real.  I assure you... someplace out there is a mom as exhausted as I feel with similar nights and no one to GET IT!

SO..... Last night was off.  Could be because break was over and he was troubled by school.  Could be he had a ton of Cheetos and the artificial yumminess was bugging him.  Could be that he was overtired. Could just be for no other reason... just off.  He struggled to settle down and go to sleep but finally made it to sleep at 8:30pm.  At 10pm he was WIDE awake and chatting and bouncing off the walls.  At that moment I wondered what we had done that made him behave so "off".  At 11 he was up eating a sandwich with Doug (who does not handle it well).  Doug sat with Espen until midnight when he came to bed and said Espen was asleep.  At 1:30am the sound of a child in the room telling me that he was watching TV and if my feet were bugging me he knew what we could do to help. And he ran off.  WHAT THE WHAT.... so I drag myself out of the bed from the warm slumber I had just reached.  To discover an infomercial on and legos everywhere.  Espen was jittery.  He was wide awake.  He could not be still.  His eyes were huge.  Like he was on drugs... I honest asked Doug if we had given him melatonin or mistakenly his meds....

And yet he was so polite, happy and informed.  And proud.  He had gotten glue and built some lego shapes and "kragled them".  I was just coming into focus and it dawned on me to ask where he had found the glue because I keep it all put in a secret spot!  He was so excited to tell me he had gotten it from downstairs.

Now I was totally awake and in focus....  He had used his headlamp to sneak past where we were sleeping, down the stairs in the black of night to the creepy laundry room where he remembered I had taken his glue pen weeks ago and put on a ledge.  He retrieved the glue and creeped back up the stairs to the living room and got to creating his masterpieces.  He had the TV on and watched some information about a system to relax the feet.

I can't be mad at him for being who he is.  I fed him again and decided I better just stay in the bed with him.  So it took some pretty firm mom skills to get him to be still.  As you know, being still is the key to falling asleep!  It also got me an elbow to the face in the dark (my life is rife with opportunity to be injured).  At 3:30am he was softly snoring and I had felt his body finally relax and drift off to sleep.  I got out of his bed and managed a few hours of sleep before the alarm sounded for me to start my day and Doug left me to it... going off to work at 7!

Night wakening can be problematic.  We are in a rental and have just been hoping he stays inside the house.  He has not left or run for a long time ~ we are fortunate and get lazy.  The rental is hard to secure and we are here a short time.  However, he passes the front door before he ever gets to the kitchen.  It is secured with one door lock.  I may never hear him.  And so now I must worry and booby trap it at night so I can hear him if he should decide to leave.

Medication for sleep.... OF COURSE there is some.  We opt not to use it.  There is not a right or wrong answer here.  We can go for long periods of time with no wake ups ~ and since moving it is even better and we anticipate with the new house, the added insulation in his room will allow him a very peaceful and quiet slumber.  At some point in his life he will make choices about medication.  We can manage with little sleep because we feel we must help him figure out how to rest and manage himself when he is rousted with active imagination at night.  To function as he is in our society as it is, he will have to find coping skills.... and he will.  And amazingly this child can function quiet well with very little sleep.  He is today...

As for me.... well I am glad to be a stay at home mom who was able to hit the trail this morning and drink an extra cup of coffee.  My day is full and I have no time for rest beyond that.  Tonight we will all go to bed a little early and just pray the sleep demons are at bay....