in response

I just clicked on a link from a friends page on face book ~ here is the article ~ and I was in disbelief and disheartened.  Every day I work to educate and inform people about what our family faces with ADHD, ODD and high functioning autism.  Our story and life is the same as some but hugely different then most.  While it is always good to share information... ADHD is a real problem... This article was written in 2012 and by a woman who has written several books (one of which I have read).  One of her points is that ADHD is on the rise.  Common statistics demonstrate a huge increase in numbers of ADHD diagnosis ~ numbers jumping from 3% in 1987 to 11% in 2014.... anyone want to remember that the population has increased drastically in those years?!  

 

The above referenced article discusses why the French have virtually no cases of ADHD.  The European nation has a vastly different view of many things and tolerance for artifical ingredients is much different then it is in the US. They also have different maternity programs, educational systems and vacation/leave for family time. In many Europen countries, there is still the attitude of raising children as a village while we see it as a unit and rely on self and the screen. It is comparing apples to oranges in many instances.

These articals get me fired up and here is why.... For 5 long years I did absolutly everything in my power and ability for my child and yet he had issues, problems and huge concerns that were not addressed by regular and repeated visits to the pediatrician. For five long hard years we were fighting an invisible force and we were terribly alone in our struggles with seeing how DIFFERENT our child was from his peers and not having one single answer as to why.  We had become fairly isolated becasue play dates ended in disaster.  We could not take him to stores, restaurants or on vacation without some huge issues and problems.  There are few people who can accept and tolerate the level of activity we bring to any situation.   We did an elimiation diet and still he eats very few processed foods, artifical colors or preservatives.  We could not teach him basic "preschool" information because we were managing safety, running and behavior concerns.  His behavior and hyperactivity created dynamic problems once he entered school.  There were days we both were in tears with the teacher or the principal becasue of some huge and terrible problem. I disipline him harshly by US standards. I have spanked, taken things, done immediate time out and walked out of places with a screaming child because of bad hyper behavior. I am THAT MOM. And still my child has behavioral and sensory problems.

The notion that I have not taught my child self control and that I use medication to mask behaviors that can be changed is frustrating. We hear it from family, friends and others that if we were just more strict, more structured, more...... (fill in the blank) then our child would behave better. In reality his little brain DOES NOT make the same chemicals that mine or yours or your childs makes and he is NOT able to control himself.  No amount of sleep, food adjustments, discipline will manage that. It won't matter if his gut is healthy when he punches your child for making a loud noise or runs out of the school because he felt like the walls were to close, or pulls the hair of the little girl next to him because it was swinging and bothering his vision. It won't matter how many times I spank him or put him in time out he will still not be able to sit in the chair or at his desk and write his name on the paper.  It doesn't matter the amount of preparation we put into going to a simple store, as soon as we hit the door the lights, sounds, people, stimuli make his skin crawl and his mind engulfed in frenzy.  All the external stimuli that most parents think cute and great drives my child insane.  Yet it is how our schools are, how our shops are, how our lives are... full of STUFF.  It is all this that distracts him, and makes his mind a jumble of nonsense. And yet the best place for him to learn at this moment is the public school and it is here that we have to learn to function.

The choice and decision to medicate my 6 year old came with much prayer and a very heavy heart. It is a decision I have to wake up to each and every single morning. It is not easy. But the alternative is watching my child fail. The diagnosing doctor once asked me as I was complaining about medicating my then 5 year old, to remove my glasses and drive home. Impossible. As is it with his medication... it is impossible for him to function.   With medication, he can be better able to function, better able to sit and take in the information, better able to ride his bike and not crash into people, better able to stay with a grown up and not run away, better able to make choices himself that are healthy. With medicaiton he can do "normal and typical" things ~ and that is what every mom dreams about. Without medication he is struggling to just be in his skin and his body can not take in any more information.  Medication does not change my child.  It does not take away his impulses.  It does not make him listen or function.  It gives his brain the ingredients it needs that he can not get anywhere else so that he may be open to receiving the information and learn the abilities to cope.   

ADHD is on the rise in the US. Absolutely because there are more people in our America.  The DSM has lumped more things under the umbrella so the prevalence is greater.  Absolutely some of it may be attributed to a generation of people who find it easier to medicate.  Medicating has become a societal norm perhaps. 

 

We have decided as a society that recess, outside time, play, discovery, family time are all less important than test scores, screen time, checking that app, watching that video and playing that game.  We should ask ourselves what kind of world are we creating.... We hide in our homes as single family units and we keep our issues and concerns to ourselves.  We don't ask for help from our neighbors or friends because of the embarrassment, stigma and frustration level that it may cause.  We take art, sports, recess, music out of schools because kids need to be smarter and study harder.  Maybe some of these contribute ~ maybe none of them.  Because even if I lived in France, my child WOULD BE MISSING SOME HUGE CHEMICAL COMPOUND IN HIS BRAIN.  And it would be hard for him to function.  As his parent, I may have to work less to provide him healthy food, a healthy environment and a village of people around us. 

 

Medication aids him.  It is a crutch for a broken leg, glasses for poor vision, a cough drop for a scratchy cough.  It is an aid.  Medication does not cure him.  It is something we face for LIFE. We work each day to teach him how to be part of this society we are all building. For him, medication is beneficial and at this moment, life saving. 

A bikers life

Because my kid is just cool.  Like a six year old can be. 

He has a VERDE BMX bike.  Built especially for tricks on half pipes and ramps.  He can pop wheelies and ride with no hands and prop his feet on the handle bars and stand on the seat while he is in motion.  Because he has no fear and just can.  He wants a half pipe in the front yard and is working on convincing his dad that he should build one. 

He loves to go out to NOWEAR Compound and ride with the big boys.  These dudes are amazing and I see a future here with Espen. 

He has a SPECIALIZED mountain bike with shocks and dirt tires.  He likes to ride the trail and we are hopeful we will see some mountain biking in his future.  The "extreme" sport of mountain biking catches his interest but one has to start someplace. 

He enjoys and benefits from OMAHA DEVO and the trail riding they do with children of all ages! 

He has a SPECIALIZED BMX race bike.  This is the start of his second season racing BMX.  Last year we did not focus on winning or points.  We just went out, had fun, learned the rules and tried to keep focused.  This year, on the first race out, he rocked it, won and then had a terrible fall.  It happens.  It was the best of both worlds and emotions were high.  His helmet was solid and for that we are super thankful.  At our house, if you don't have a helmet, you don't ride... no exceptions. 

Omaha BMX has a great course and great people for us to learn from.  They have patience when Espen has the wiggles and just get out and ride bikes! 

 And Espen has just gotten a motorized dirt bike that he calls ROLLING THUNDER.  He is cool.  He has discovered he has full control over his speed and course.  He LOVES it and we see the twinkle in his eye when he whips it around and goes fast!  His comfort level has increased and the training bar will be coming off.  We expect some falls and crashes.  He claims he wants to race... so we will see what is in our future.  The fact that he manages himself, he has control is a big deal for a child who is constantly monitored.  This is the most empowering and confidence building machine we currently own. 

The thing many moms ask me.... How about my nerves ~ how do I let him do it.  My son has always been a risk taker and has always done stunts of one sort or another.  I do my best to have good gear on him, safe surroundings and I am pretty hard core with the few rules we have (always helmet & shoes, no street unless adult is out there, never go where I can't see you).  So when I see him fly down the street with no hands on the handle bars, I know one day there will be a crash and I have done my best to just protect him.  Because I can't stop him from thinking up and doing the tricks.  It is WHO he is.  And he is cool.  I put my fears aside and just support the wild endeavors of my kid....

And isn't he cool.....

ODD ~ let me break it down for you ~

Oppositional Defiant Disorder.  ODD. 

It sucks. 

In the most basic of definitions it "is a condition in which a child displays an ongoing pattern of uncooperative, defiant, hostile, and annoying behavior toward people in authority. The child's behavior often disrupts the child's normal daily activities, including activities within the family and at school." ~ WebMD

In our house it just sucks.  On the most mundane of days it rears its ugly head and can be brutal quickly and then go away.  And on the most challenging days it never stops and it is like a freight train colliding with an oil rig and it just never stops exploding.   

In our house on a day like today, the ODD beast was about and he was prolific.  Let me explain. 

ODD feels like something takes over your child and controls them to the point of disaster.  There is absolutely nothing you can say or do that will be "right".  There is no way they will do anything but argue or defy everything. 

There were hours in my afternoon spent with a 5 year old who simply argued, screamed and disagreed with virtually every single thing I said, suggested or implied.  The ODD beast insisted he was right about absolutely everything.  ODD LOUDLY insisted I play, and then told me exactly what or how or where to play and when I was not complying with his demands, he was off the charts with emotion and screaming and accusing me of doing it all wrong.  The ODD came out and was sassy and opposing to the rules and when the rules were enforced, ODD decided to be even more vindictive and quietly destroy and make messes.  ODD had a hard time quietly listening to my words because NONE OF IT WAS RIGHT. 

NONE OF IT. 

Needless to say, my afternoon was very long.

Oppositional Defiant Disorder is not something that I can easily describe and yes sure, it can seem like I am perhaps the World's Worst Mom.  I did however win an award for World's Best Mom recently so I know I'm pretty good!  A child with ODD however often presents like a spoiled rotten mouthy little brat.  We actually have a real diagnosis and these behaviors have been witnessed by people beyond this house. Signs of ODD include:  actively refuses to comply with requests or consensus-supported rules; performs actions deliberately to annoy others; is angry and resentful of others; argues often; blames others for their own mistakes; frequently loses temper; is spiteful or seeks revenge; and is touchy or easily annoyed. 
 

What is exhausting is not the actual opposition.  It is the toll being calm and steady takes on me.  The steady emotion it takes to not engage with his demands and arguments.  It is draining being consistent over and over because ODD just keeps on and on and on.... When ODD is running about, it is hard to just be clear and consistent... I want to snatch my beautiful son and run away from ODD.  But alas, the ODD is part of who he is and so I manage it and him and we use it as a learning moment. 

Let me tell you ~ I do not need to learn any more.  I'm good.  I have GOT IT.  Because the hardest part about ODD is that I have to remove myself in a way that is protecting.  ODD can be very personal and feel like an attack.  It is hard to simply remain almost aloof and be calm, clear and concise and then walk away because ODD will KEEP AT YOU. 

We made it through another day.  Espen lost his legos, ipad and ability to go anywhere the rest of the afternoon.  He served a couple time outs and had some serious cleaning to help me with.  We managed.  I keep the rules simple and the language regarding my expectations clear.  Most importantly, I do not engage in arguing.  There is simply no point. Once I know he has heard the rule or the statement I move away because he will not stop.  When he complies I reward him with lots of positive praise.  I'm good at this "game"... but it doesn't change the fact of the matter... ODD sucks. 

Today was by far the most challenging it has been.  And it sucks. 

It is ok to change your mind

Being a mom can be the most challenging activity.  The last few days I have been challenged.  It is nothing we haven't done before.   Even then it is exhausting and frustrating!

There are things that happen in a house with a child that has diagnosed high functioning autism, ADHD/ODD that perhaps "typical" households can not comprehend or even understand.  For example we live in a routine.  Yes waking up, getting dressed, socks and shoes to bed time...  it is all routine. We buy the same foods.  We travel the same routes.  We sit in the same spots.  But in our house there is also a bit of defiance in each task.  Even the most simple of things.  It is just normal.
 
Our routine includes things that may not seem like a big deal.... He will only swing on ONE swing at home, even though we have 3.  If someone else should even dare to swing on "his" swing, he melts down.  He sits in the same place for each meal.  Even when we have guests, his spot is his spot.  Our routine includes always using the same kind of laundry soap and shampoo.  Going to the grocery is the same as a trip to the zoo... overwhelming and extremely hard! 

And even knowing these things about my child, I often just screw up.  I hope "this time" it might be different.  I sit in the chair for a minute and his face gets heavy with anxiety.  A kid uses "his" swing and he runs off screaming.  If we walk home a different route he is suddenly anxious about the walk.  I ask and prep him for a grocery trip and I still end up "cleaning up on aisle 2" ~ it is just not pretty. 

Do not mistake this for a child who doesn't share or is spoiled and throwing a fit.  This is not a naughty child who sasses his mom.  Although he does that too.  This is about a child who just can't handle all the things "typical developing" children can take.  So no matter how great things go each day, we face those moments when all hell breaks loose.  The way I handle and manage the breaks will determine the outcome of our day. 

Recall my blog of a few months ago where I lifted the weight off my chest and we decided to hold Espen back.  Over the last 2-3 weeks he has demonstrated a marked increase in his desire to write things down.  His test scores have improved drastically.  He is doing sight cards by the bundle and will sound things out (as long as he is on a swing).  We have invested in making flash cards, dice games and counting money.  We read as often and as much of whatever he wants to read (I have read Fly Guy and Capitan Underpants as much as No, David No).  We encourage. 

He had a medication check this week where we chatted with the pediatrician about holding him back a year.  To my surprise, we were strongly advised and cautioned against it.  The pediatrician had many valid reasons and I listened with an open mind.  We were also cautioned to think about his behaviors when his physical size and abilities meet children not as able as he is as well as his curious nature and simply being bored with things he has already done.  His kindergarten teacher has weighed in and also advises us to move him forward to first grade.  We met with her and asked questions and listened to her years of experiences with open minds and hearts.  Perhaps most importantly, Espen has been telling us he is going to first grade... he is sure of it.

The last week with this information and advice I had to evaluate the choices and decisions I make for my child as a mom.  I fear he is not ready and prepared for first grade.  That he needs another year of kindergarten to build the fundamentals of education in his brain.  I understand and get the social reasons but I'm worried about what happens when he is behind and lagging and gets frustrated and we are faced with behaviors that are less than desirable.  I fear what happens when there are not enough adult supports for the first grade teacher and Espen is lost, confused and not able to keep up and acts out.   I am unsettled about first grade.  But I put my fears aside.  I listen to the amazing progress he is making and I pray it is enough.  I am unsettled about how he will manage the work of first grade when it means changing routines faster.  I am unsettled about first grade because I am not sure his mind is ready for it.  And yet there is not any guarantee that a year later he would be ready.  There is no guarantee he would not have huge behavioral and social problems being held back. Basically there is not one single guarantee either way and I am unsettled. 

Honest to goodness, I kick myself for not pulling him last year and holding him then. 

My mom gut of trepidation about sending him on is still screaming at me.  I am the only one it screams at.  I have to deal with it.  And I will be a solid support and advocate for Espen.  He will have a fantastic first grade teacher who will do everything in her power to assist his learning and growth.  I trust in that.  If life with my son has taught me anything, it has taught me I need to be ready for anything. And so we go into summer break ready to move on to first grade.  And I am terrified for him and the future. 

happy Mother's Day

I am blessed and very thankful.  It is at this time of year that I feel it most.  Because of mother's day or because my baby has a birthday in May, I always think about our first time to meet Tia, Espen's birth mom, and I am always thankful for the opportunity that brought us to be in each others lives.  Her gift of life allows me each an every one of the opportunities I am given as a mom.  It means I get to hear "I love you mommy" each and every day.  And it is not something I ever forget because it is the most beautiful exchange of love.  Her courage means I have a beautiful son. 

I am a mom.  Being a mom is a wildly loud messy experience.  It is a quiet snuggle.  It is a frustrating struggle.  There are tears and laughs.  It means I often have either snot or mud somewhere on my clothes.  Being a mom is often the most rewarding and exhausting thing I do.  It means I'm sometimes late, frazzled and tired.

It means I am here, I see you and I listen ~ with my eyes, ears and senses.  Being a mom means I am up when I don't want to be, playing things I may not want to play, looking at things I really don't want to see.  Motherhood means I have to be courageous and strong because children push the envelope of what is possible.  It means answering the hard questions and laughing at the silly things. 

Being a mom makes me thankful for the thankless days.  It makes me smile when I have been crying.  It makes me giggle when things are crazy.   Being a mom means you kiss away tears, wipe up spills and answer questions at the speed of light.  It means learning new things, eating healthy food and attempting to keep my body in good condition.  It doesn't matter how you arrive at being a mom, it means you live in this moment because the next one comes really fast. 

Even when faced with challenges and struggles, there are countless ways being a mother is rewarding.  Take time on this day to just be thankful for the mess, the noise, the laundry and the wild giggles.  Mother's Day may not mean anyone acknowledges your work and dedication ~ it may just mean that you stop and take a deep breath and recognize that you are doing the best you can at this moment and be thankful for that.  It doesn't give you a day off ~ it gives you a reminder to pause and be joyous for the special gift you were given.  I know I did.... and I stole a few extra kisses and hugs and was just proudly a mom. 

i'm black

It may be important to preface this for any first time readers with ~ My son is adopted.  He is African American / Native American.  We are Caucasian parents. 

Sitting with Espen at the lunch table I was point blank asked by a peer "why did you adopt a black baby, you're white".... I was stumped and surprised but covered it up really fast with my "I just wanted a family, it makes no difference what he looks like" answer.  I applauded her curiosity and appreciated her ability to ask a question adults would never dream of. 

This peer was not finished asking me questions... wanted to know how Espen got black, why I adopted him again and why did I adopt in general.  I always believe in honest answers and gave her the best ones I could at that moment.  The other children were listening to this exchange.  Especially Espen (who knows he is adopted). 

This lovely little girl went on to tell me an amazing account of her life ~ complete with being left alone and adopted by a "black mom" ~ all of which I learn are far from the truth.  But she was convincing and I listened.  Then I just encouraged them to all EAT YOUR LUNCH!

To my credit as a mom we recognize and talk about adoption.  We talk about why we adopted, how it happened and where he came from.  We talk about how families are different and come from different places.  We talk about his birth mom, Tia, her difficult choices and the gift of love.  We talk about all the people who loved him to make our adoption happen.  We talk about our own choices in hair (he is currently in Mohawk again), clothes, words and actions.  We must never talk about him as "black".  He is just my son....

So imagine my suppressed giggle when after listening to this whole exchange with his peer, he leaned really close to me and said "mom AM I BLACK".  My response didn't even matter because he was off to the rest of his day and it never came back up.  It seems we need to give some acknowledgement of his roots.  Never are we ashamed of his heritage, to us, he is just our son... the most amazing gift in the world. 

It is more important to teach our child how to be who he is not what color he is.  We focus on his talents, skills and knowledge not on his color.  We provide him with every imaginable shade and shape of toy that stimulate his imagination and creativity.  We tell him all about what we know of Tia and we do so with respect for her choices and understanding of how hard those choices were.  We must positively demonstrate how to look past what people look like and focus on other qualities. 

We teach him how to be Espen... because he is AMAZING! 

my feet hurt...

Now that I have had some hours to calm down I can focus.  What happened today made me cry and get angry.  It made me want to leave this neighborhood and state in a quick hurry.  It made my trust of humanity dwindle even further.  It made me feel like no matter what I do, how hard I work, the lengths I go to... I will struggle to keep my son safe.  It made me mad at Espen and all the THINGS happening inside of him.  And it made my feet hurt.

He got into bed with me at 4:00am with the words "I miss you mommy" and I spent the next few hours listening to him sleep and fighting off a bothersome cat (who at 5:46am threw up in my brand new, only worn once TOMS shoes... UGH).  I just loved him.  When he got up I struggled out of bed to make him breakfast (anyone who knows me knows I hate mornings).   I played and played ... exactly and only what he wanted to play.  I didn't add my desires into what he wanted ~ a hard task to do but one we learned from counseling.  We had lunch and he had COLORED popsicles.  After a week of very limited sugar and no coloring, I gave in and he was allowed two of the worlds most delicious popsicles. 

He played in the water (the sun was shining so it was clearly warm enough!).  He was riding his little ATV and we were having a grand time playing on it.  Suddenly he drove it to the neighbors driveway got it stuck and got off.  He TOOK OFF RUNNING.  He was wet and had no shoes on.  I called him and grabbed the ATV out of the neighbors driveway.  By the time I looked back to him he was quickly sprinting away from home.  He had a really good lead on me.  Never in my wildest dreams did I expect this to happen. 

I took off after him IN MY FLIP FLOPS.  He made it to the end of our street and turned the corner.  It is the path we go to school so I know he knows it.  I was moving fast but this 5 year old was hauling ass.  By the time I got to the corner, he was nearly to the next one (I had been on uphill, he was on downhill).  I was yelling for him.  He glanced back a couple times but kept going.  He was just running and running very fast.  I tried in vain to call my husband who was calmly in the garage listening to music and working on a wood project.  I tried 3 times.  I was stressed.  Scared.  MAD. 

How dare this little boy take off and run.  How dare he look at me and just keep going.  What the hell does he think he is doing.  Why are NONE of the neighbors who see him coming stopping a barefoot, wet child who is RUNNING with no adult in sight.  I can't see him what if he cuts into a yard or goes inside a house.  WHAT IF SOMEONE TAKES HIM.  Why is my flipping husband not answering his flipping phone.  ~ All these thoughts were racing in my head...

The little boy made it all the way up the hill, .60 miles to the school, around the back of the school and stopped for a breather on the swing before I nabbed him.  I was FUMING.  I was scared. I nearly had my best time sprinting that distance.  I was nearly ready to beat the tar out of him. 

I held his hand and marched him all the way home.  He screamed at me.  I screamed back.  His response was he left because he was mad at being stuck on the ATV.  Yes he saw me but he said his body just told him to run and that was all he could think on.  He had no destination but said he felt like he was going to keep running.  He has no empathy or comprehension for the fear I was feeling.  His body just was in GO mode... his fight or flight response was simply flight.

He had 30 minutes in his room alone.  I removed ALL the toys and anything that looked remotely fun. I had 30 minutes without him.  I cried.  And fumed.  And was mad.  And my feet hurt....

After his time out, he and I talked (because I had not done enough of it on the way home). I simply explained to him how it made me feel.  I explained there are consequences for every action.  He is grounded for a week from any play with anyone outside of school ~ we won't even be going to the park on our own.  He is not allowed to do anything extra this week.  His ipad is limited.  And he is cut off from sugar (mostly colored) until I am stupid enough to let him try again. 

During his 30 minute time out I was fuming mad.  I was frustrated at how NO ONE STOPPED HIM.  Doug's claim that people will always turn a blind eye and never want to get involved seems to be the truth.  I was upset about what kind of world we live in.  I was fearful that no matter how good I think I am, if his flight instinct kicks in, I am not sure I can keep him safe.  He is fast.  And he has stamina.  And gosh dam he just powered his little barefoot body .60 mile uphill and I felt completely out of shape and shamed.  He crossed streets ~ he could be hit by a car.  He was not in my sight line ~ someone could snatch him.  He could vanish and as hard as I was trying to get there ~ I MIGHT BE TO LATE.  And so I sobbed. 

Because I don't know that he will "get it" now or in 5 more times.  Because I don't know what I can do differently.  Because I give him ALL I HAVE, I'm exhausted and drained (lack of sleep, constant play, non stop talking) and yet it seems like I have to dig deeper to find even more to give.  Because he is 5 and fast what happens at age 6 or 10 or 15?  Because we live in a flipping society of "turn the other cheek" and it is horrible. 

I sobbed because my child is "wired" differently and even seeing me behind him, his brain would not flip over to STOP.  And honestly it SUCKS.  It sucks that his brain is just different.  It sucks that I suspect artificial color messes him up even further.  It is not an excuse ~ I am not giving him a free pass to just be a naughty child.  It sucks because even at the end of the night and I read a book about staying with mommy no matter how your body feels, he can not relate that to himself.  This was not a naughty plot or play... this is just our life.  And that is not an excuse for naughty behavior....