Holiday Exhaustion

I'm tried.  But eh who cares... we all are right!  I'm frazzled and anxious about finding myself careening headfirst into the HOLIDAY season.  But many are finding themselves feeling the same but for perhaps much different reasons.

It is not because we are broke or unable to travel or 'alone' this year.  It is not because I don't have a plan for gifting.  It is not because I am not eagerly anticipating a joyous season watching the magic on my child's face and feeling his excitement for all things festive... I love that.

This total exhaustion and dread started just after Halloween.  It is getting progressively worse.  And sadly, it is taking some of my joy from the season.  Honestly, I am just tired.  The issue is that Espen is sleeping less and less.  He is waking earlier and earlier and not going back to sleep.  Let me be very clear... this is not a typical extra half hour on either side of the night.  It is that he can be fighting bed time until 11pm and wide awake at 2:30am to NEVER go back to sleep again until we start the dreaded process all over again.

We have taken technology.  We have bribed.  We have yelled and snuggled.  We feed him eggs and protein in the middle of the sleeplessness.  We try early bed and later bed to see what might work. We keep active so he is physically tired.  We get fresh air, even in the cold.  We give him melatonin and warm milk.  We keep his room cool and his sheets clean.  We remove toys and distractions.  We have tried an alarm clock, a calendar and tricks.  We read books and dim lights.  We power on when he is awake at 2:30am and we go to school and work and we keep at it.  There are no days off because we are tired.  There are never naps.  There is not a lot of sugar or junk at our house.

As we creep past Thanksgiving and December hits, schedules at school get altered just ever so slightly to account for "fun stuff".  Days off for Thanksgiving followed by music concerts and classroom parties and fun activities as teachers prepare for time away from school!  We fit in family time and visits to Santa.  We wrap gifts and sing carols.  The excitement builds and he is boundless in his enthusiasm to embrace LIFE.

And even still as I tell you how TIRED I am and I know what to expect (a hellish nightmare of total exhaustion) I find myself eager to have him home for Thanksgiving.  We will go see a movie, visit with friends, light up our tree, eat to much, hike in the woods and play more than most!  I find myself looking up when Jolly Saint Nick arrives so I can plan on getting him in a clean outfit for a quick visit.  I hand him all the holiday catalogs and a marker so that he can be engaged in making circles.  I smile and oblige when he asks if we can make Christmas cookies for the neighbors and sing in a video for his Aunts.

I dread the endless days and nights of anxious excitement.  I sigh at the continued inability to help him understand time and days of the week.  I find ways to experience the season and put a safety bubble in place to minimize our holiday parties, festivities and decorations.  I visit with his teacher to help them put some systems in place to help him.  We experience the holidays in large ways and without much sleep so minimizing only helps a little!

So for the next month, if you don't hear much from me or I look tired or frazzled, just know it will pass and we will get sleep.... In January!  When life returns to schedules and is much less exciting!  For now, we enjoy what we do, we do it as a family and we are tired!

This is my normal.  I am thankful for my normal and that I can manage on little sleep.  I am thankful for the gifts my child brings to my life and the courage to expose him to this frenzied holiday season.

What the books don't tell you

At the age of 5, when I first learned, with relief, that my child has ADHD (and a host of other letters behind it that we just ignore right now) I gathered book after book and read it all.  I searched links and websites and gathered information and knowledge.  I needed to know some things.  I needed to know how to parent this little boy with these issues I was not informed about.  Now, nearly 3 years later, I have a fairly substantial library on the subject.  I would by no means call my self an expert on the topic, but yea... yea I am.

ADHD.... Like a four pronged beast is all about attention deficit hyperactivity disorder... so basically my child has trouble paying attention, keeping his attention and being attentive... he is hyper and active (no kidding ~ like all the time, non stop movement, crashing, wiggles, jitters) but to the extreme hyper, not just like he has had a few sips of my coffee... but legit hyper... and the disorder means that it grossly impacts his life, learning and ability to function within parameters as classified in the big DSM book.  We manage this all with meds and a lot of yelling and some healthy food... it is not perfect but really is anyone?

I have discovered however in my exhaustive research, that there are things that are not often in any book. Things not mentioned by pediatricians (generally speaking).  Not shared on websites (because some of it is so hard to talk about no one wants to be honest and talk about it).  There are things no one wants to talk about and things people will talk about but often don't because they are consumed with managing to survive.  These things are often the hardest, most frustrating and glorious.

Don't get me wrong... parenting is a hard job.  Every parent has days when the wheels fly off.  The crap hits and just keeps splattering.  When everyone is just a heap of raw nerves barely managing to get to the next breath.  This is our experience, and you are reading my blog... so read it or leave...

In my world, parenting this one child with this massive beast called ADHD is unique, exhausting, trying and rewarding.  We do not function on "normal" levels.... we are off the charts with energy levels and patience.  We operate on little sleep, wonky meals and freestyle events we just call LIFE. We fill our house with as many CANS and WILLS as we are able to because so often it is NO, DON'T, STOP.... Every single day is a brand new day for us... one we start with as much optimism as we can muster (no matter how much sleep we have had) and one we end with as much love as we have filled our heart with.  Believe me... our hearts are pretty darn full and we never hesitate to tell this little dude that.

Anyway... back to my long point... I had no idea... NONE... even from reading all the books and websites how hard it was going to be.  That there would be days and nights when we all wanted to just drive off alone.  Our parenting task is hugely different, (or so it seems in my sleep deprived mind) I wanted to share some things you may not garner from any literature.  Things that are real problems in a household with a child with ADHD...

You will be judged.  Period.  Your "wild" child will do something and people will judge you.  They will think you are terrible at parenting.  They will think you need to spank or punish or consider or do.    They will not want your child to engage or play with their child for a litany of reasons.  You will see it, hear it and know it.  Forget about it.  Move on.  Be the best parent to your child that you can be.  Find your tribe.  Those who will just accept as you are with no strings.  Support your child and just figuratively flip the bird to those that are going to judge. And for heavens sake... just keep taking your child, doing things with them.  Don't hide.

You will have the worst sleep patterns.  Up late, fighting sleep.  Easily awakened.  Able to stay up longer than a college student.  Even when sleep is awesome, there are hard nights.  Find what works, go with it but teach them how to behave when they are up long periods of time.  Learn to manage.  Force your child to manage with no naps.  Teach them what to do in the dead of night because sleep problems will just go with them.  Do what you think is best, change it when you have to.

Your ears and mind will hurt from non stop talking.  About everything and nothing. Yes, I understand all children talk.  There is not a volume control, and loud is generally the only level!  NON STOP.  Not only is there talking, but often a response is required.  Pay attention.  Sometimes in all that talk, they are really trying to tell you something important and figure out things.  

You will get used to movement.  Crashing, wiggling, running .. movement.  Even when it is a calm activity, there is always movement.  You will just accept that it is normal and the calm, still moments become alarming.  My house has become a jungle gym.  I don't freak or fret when he jumps from the couch to the floor or the foot stool.  I don't get mad when he races through the house at warp speed.  I'm not upset that instead of a nicely finished and furnished basement, we have 2 swings, concrete floor for chalk and paint drawings, toys and tents scattered everywhere.  Make the sensory needs work for your child... stop thinking life has to fit inside a "normal" box.  You are not in it anyway... Get used to the unrest.  You will enjoy those fleeting moments when a snuggle comes your way.  Those moments you will stop and totally enjoy!

You will play nearly ALL THE TIME.  Social skills are challenging at best (this you will read all about).  But what is often not shared is that because play is so important in building those skills your child will not know HOW to play.  Telling him to go play just leaves him blank.  For mine, an only child, he has no sibling to show him or play with him.  So instead of just telling him to play, we often play with him.  And of course if you try to multi task and get some laundry or supper cooked while playing, when you wander off, so does he which means play has been disrupted and now you are back to mindless running and jumping!  So we play...  Every single moment becomes one giant opportunity for learning or adjusting behavior.  It never stops.

Do not beat your head into a wall about time.  These little people have a really difficult grasp of time. Use a calendar to keep your self straight.  Give your child information about future events as they can manage it.  Be prepared for constant barrage of 'when' questions because a day or a month is about the same to them.  

Imagine how many figments of speech one uses in the course of a day.  How many times we use one word to mean something else.  Most children with ADHD are extremely literal... they take that word to mean what it means.  It is very challenging in understanding game play, social interactions and some simple tasks when the words are just a jumble of wonky meanings.  Say what you mean and mean what you say.

Because ADHD children are often extremely hyper, they are often also thrill seekers ... This is not necessarily in physical abilities (in our case indeed it is).  But also, they love to engage in utilizing bad words, bad gestures, crazy stunts, and tricks that are just flat out dangerous.  In trying to explain appropriate use or safety, children often have no ability to understand the consequence for engagement.  We minimize dangerous situations by creating the safest living environment we can and by just reminding constantly about natural consequences.

The hardest part of having a child like mine is in remembering to simply take care of the adults in the house.  Our role is non-stop and we fall exhausted into the bed, never knowing if we will sleep all night or not to just get by the next day.  We manage to survive most days just by a tiny thread.  So we have to work at remembering to take care of ourselves and each other.  Again let me remind you... find the tribe of people who GET IT.  Those who understand your kid, those who are cool if you show up with your pants on backwards and messy hair... find them.   Complain.  Cheer.  Support.  And love each other....

Holiday Exhaustion

I'm tried.  But eh who cares... we all are right!  I'm frazzled and anxious about finding myself careening headfirst into the HOLIDAY season.  But many are finding themselves feeling the same but for perhaps much different reasons.

It is not because we are broke or unable to travel or 'alone' this year.  It is not because I don't have a plan for gifting.  It is not because I am not eagerly anticipating a joyous season watching the magic on my child's face and feeling his excitement for all things festive... I love that.

This total exhaustion and dread started just after Halloween.  It is getting progressively worse.  And sadly, it is taking some of my joy from the season.  Honestly, I am just tired.  The issue is that Espen is sleeping less and less.  He is waking earlier and earlier and not going back to sleep.  Let me be very clear... this is not a typical extra half hour on either side of the night.  It is that he can be fighting bed time until 11pm and wide awake at 2:30am to NEVER go back to sleep again until we start the dreaded process all over again.

We have taken technology.  We have bribed.  We have yelled and snuggled.  We feed him eggs and protein in the middle of the sleeplessness.  We try early bed and later bed to see what might work. We keep active so he is physically tired.  We get fresh air, even in the cold.  We give him melatonin and warm milk.  We keep his room cool and his sheets clean.  We remove toys and distractions.  We have tried an alarm clock, a calendar and tricks.  We read books and dim lights.  We power on when he is awake at 2:30am and we go to school and work and we keep at it.  There are no days off because we are tired.  There are never naps.  There is not a lot of sugar or junk at our house.

As we creep past Thanksgiving and December hits, schedules at school get altered just ever so slightly to account for "fun stuff".  Days off for Thanksgiving followed by music concerts and classroom parties and fun activities as teachers prepare for time away from school!  We fit in family time and visits to Santa.  We wrap gifts and sing carols.  The excitement builds and he is boundless in his enthusiasm to embrace LIFE.

And even still as I tell you how TIRED I am and I know what to expect (a hellish nightmare of total exhaustion) I find myself eager to have him home for Thanksgiving.  We will go see a movie, visit with friends, light up our tree, eat to much, hike in the woods and play more than most!  I find myself looking up when Jolly Saint Nick arrives so I can plan on getting him in a clean outfit for a quick visit.  I hand him all the holiday catalogs and a marker so that he can be engaged in making circles.  I smile and oblige when he asks if we can make Christmas cookies for the neighbors and sing in a video for his Aunts.

I dread the endless days and nights of anxious excitement.  I sigh at the continued inability to help him understand time and days of the week.  I find ways to experience the season and put a safety bubble in place to minimize our holiday parties, festivities and decorations.  I visit with his teacher to help them put some systems in place to help him.  We experience the holidays in large ways and without much sleep so minimizing only helps a little!

So for the next month, if you don't hear much from me or I look tired or frazzled, just know it will pass and we will get sleep.... In January!  When life returns to schedules and is much less exciting!  For now, we enjoy what we do, we do it as a family and we are tired!

This is my normal.  I am thankful for my normal and that I can manage on little sleep.  I am thankful for the gifts my child brings to my life and the courage to expose him to this frenzied holiday season.

It is connected... but barely

We are approaching the "mid year" mark in our story.  November is a time that most welcome winter or a change of the season at least.  For the last 7 years it has marked the half birthday for my son and a time when I post a note & pics to his birth mom.

There are so many thoughts I have at this moment after reading an adoption story, the situation in our current political environment and speaking with a real human today I am overwhelmed with blessing, concern and conviction.  Bear with me as I try to bring them all together ...

The blessing is that our adoption story is amazing and Espen's birth mom is amazingly brave and strong.  I have said it repeatedly for over 7 years.  Nothing I can ever do compares to her act of selfless love when she gave me this beautiful little boy to raise.  And he is a blessing.  In all of his wiggly wild enthusiasm for life, he is never a burden.  He constantly teaches me how to let go and live fully in a different way than I had ever imagined.  He completes each of us in much different ways and our love for him just continues to grow.  While I am full of gratitude, not all adoptions go as ours did.  Today I was brought to tears by the story I read and the love an adoptive couple showed to a birth mom in encouraging her to do what was best for her and the baby she carried and loved. While they were supportive, their immediate family was less than and it made the situation hard.  It is not an easy decision and one few can fully appreciate.  I am blessed to have Espen's birth mom in my life and my prayer is she knows that.

I am raising a boy in a world of unjust and unrest.  I am raising my son to have respect for himself and others.  I am raising him in a world where we value materials more than life.  Where we communicate with technology more than personal interactions.  A world where nearly every move we make has potential to be caught on camera and recorded for life.  I am raising him in a world in which mistakes may haunt him.  Unfortunately, we are also faced with many more issues because of the color of his beautiful skin.  I am raising a son in a world in which his appearance before his actions may be the first thing someone reacts to and it may have terrible consequences.  I sit and watch all the debates.  I read political posts and commentary.  I am concerned and honestly afraid for all of us when we decide if it is better to elect a criminal or a sexist racist bigot.  It is a terrible decision and one we will all live with.  But no matter who runs our political system, I have the duty to behave and teach my son what matters.  I will pray that my concerns are never materialized.  And that what I impart onto him is enough.

This unrest in our world leads me to my last thoughts for today.  I volunteer at the school.  It was not easy to get to be a volunteer at this small school, but I was persistent.  While volunteering today I pondered why they are not asking for parent volunteers for an upcoming book fair.  I know there are parents that would give one or two hours for the fair when they may not be able to regularly.  I know there are new parents to the area who come from other schools like we did who are used to giving time.  I had a dialog with a great woman in which I stressed that there are many who may not be able to give financially (and frankly we are asked so often for money that we simply tire of being asked) but there are plenty of other ways we can give and one of them is of our time.  People would help if she asked.  I am positive of it.  I have first hand knowledge that many of the parents I speak with would give time when they were asked especially when other resources are limited.  I pointed out that my son sees me give my time and interact with people.  Through me, he is learning the importance of helping and giving your time.  He does not just see me give money.   There is value in human connection and being part of the school and community adds value to my life and that of my family. We should all be working at building those relationships, looking at people, connecting.

Because if we can connect with people, the unrest in the world may not be so terrible for all of us.  We may be able to make it to something better if we can connect.  We may see less skin tones and more human tones.  This is the world I am raising my blessing in.  One that I am navigating for both of us right now.  One I am going to do my part in so that he has the best possible path for his journey.
This month, when I send pictures and a note to his birth mom, I am going to tell her all about his connections and how much I adore being his mom and how cool his dad is.  And in this way my friends, there is a connection for my child to the wonderful woman who gave birth to him and to the woman who is raising him and to the world in which we live.

PEE AGAIN.... I am going to loose it...

Used to be a time when I blogged a lot about our 'poop experiences'. You can look back here and here and here and see a few of my tearful trials and pleas for anyone to compassionately understand.  I developed expert skills at cleaning random things from virtually everywhere.  We never ran out of duck tape to keep his diaper and pants on at nap/rest time and cleaning supplies to clean the endless string of messes.  My problems were much larger than any I had heard about or imagined and no one confessed to similar issues.

And now at age 7 I am at my most stressed wits end with curious issues.  I waver because it could be: "busy" boy and not making it;
flat out LAZY;
not able to feel things until to late;
freaked out by sounds;
or just plain testing my patience.

He has had a weird bout with accidents of late resulting in constant need for a spare pair.  We don't leave home without a second/third pair of pants.  Even when reminded and forced to bathroom, we have experienced accidents. They happen anywhere, at any time.  If I could get a handle on them, I would.

He neglects to flush the toilet.  He runs and refuses.  There is not a thing I can do about the sound a toilet makes when it flushes.  Public restrooms are often worse than our home.  He tries to be as far as possible when the "WOOOSH" of water happens.  And at home, he just leaves it.  As imagined, it is grossly annoying.  I can tolerate it IF he is making it in the toilet and I am not cleaning up a mess. Pick my battle so to speak.

I have discovered poop in the trash.  I have accidentally come upon wet pee saturated carpet in his closet (discovered it while searching for the horrible pee smell).  I have cleaned poop from the shower.  I have cleaned pee from the walls and floor and toilets.  Today I tossed a shower curtain and all the toys from the tub when I discovered he has been peeing in the shower in the mornings so he does not have to flush.

I have bribed.  Yelled.  Taken privileges.  I have cried.  Cleaned.  Found a way to get urine smells from my carpet and shower.  I am a professional cleaner of sorts.  I have been calm and compassionate and only developed a slight eye twitch.  I have hugged him even when he is a mess and told him I loved him but that I do not love pee.  We own "Everyone Poops" and "Bear in Underwear" ~ both encourage good bathroom habits.

I am at my wits end.  I have mentioned, complained and told the pediatrician and therapist.  We do not think it is a "plumbing" issue but more sensory, stubborn, curious....  After our latest incident, I have decided he will have to be monitored for a while in the restroom.  This of course made him really mad.  I have no other solutions.

The struggles are very real my friends.  I have a library of literature about sensory processing disorder, ADHD and behavioral issues and nothing touches on bathroom issues to the extent that I have questions and need answers.  The struggle goes beyond a battle of wills between knowing what he should do and actually doing it.  The struggles are never ending and deflating.

Today when my husband gets home, he will hear how I single-handedly scoured the bathroom from top to bottom, eliminated some toys from our household, calmly managed to get the truth from my child! So you see I am in fact an expert on cleaning urine from things.  I do it often and efficiently.  It is not a chore I relish.  If you come over, you will never know it and it is safe to sit anywhere.   And how is that for a Friday?  Just a regular day in "paradise"...

Back to school note to my son

My amazing son, you may not know the lengths I have traveled to get you here.  The sleepless nights and worried filled days.  The adult decisions I have had to make that I never thought I would think about.  I have paved the way as best as I can for you.  I have made every attempt to set you up for a successful year and now all I can do wait and help you along the way.

I pushed nearly every possible "must do" aside and let our summer just be time together and large fun.  I have traveled around town providing us with stimulating entertainment and the love and support of friends who accept you as you are.  There were meltdowns and tears and no one was bothered, just accepted us in the place we are in and you needed that.  We have been busy, there is but one thing on both of our "summer bucket lists" that is undone, and alas, I just do not have the energy or the funds to make that happen.  Summer we will always look forward to because we manage to live our lives to the fullest.

But now, love, we have had to prepare for school.  We must relinquish our days of sunny freedoms to the long days ahead full of learning and social norms.  I have taken you to the doctor and therapist for med checks and on going therapy.  I have given you a med break for weeks this summer and then continued with limited medication so that I could help you to gain weight.  Weight you desperately needed to gain.  I have fed your body and soul with healthy food and loving energy.  The last few nights, I have worked really diligently to get you back onto a sleep schedule so your little boy body is rested and ready. In this I am failing, you fight rest like a solider fights the enemy, to the death. But we have tried and that matters.  I have schlepped you along to the shoe store for new shoes and fought you on the price of a backpack.  I have washed and labeled all your sensory tools and fidgets so that you have them when and where you need them.

I have emailed introductions to the teacher, nurse and "team" so there are no surprises and you are greeted with readiness to help you succeed at this new school.  And we have visited more times than most so that you are comfortable finding the bathroom and classroom.  I have surrounded you with encouragement and introduced you to the people you will be spending your days with.

So now I just pray.  Pray that these people at this new school love you for you.  That they accept your challenges and help you find ways to adapt and grow.  Most importantly, I hope they help you learn and that you can like to learn.  It will not be easy but maybe there will be one thing you like to learn and we can build on that!  I pray they are tolerant and fair and when necessary, brave.  It takes bravery and courage to learn, question and communicate when you are an adult and we need them to have strength to do that for you and every child who may be different.  I pray they have the same compassion and humor your last teachers have had because we need that!

My prayer mostly is that they will find a way to reach you and teach you.  It is the hope all parents have.

Summer is over, it was enormously fun, but now the work starts....  your way is paved as best as I could get it.  And no matter what happens, I am here... I am here with love, support, enthusiastic encouragement, strength to get us through the rough patches, courage to stand up when you need me to, but most of all love.

**and now to put the list of things I have put off back on my plate... :)**

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....