Time

Time.  It means everything.  It is not something however that I can put in your hand and you can see, touch or smell.  To my child time has no meaning.  Imagine the very difficult concept of time itself.   Number sequences of seconds & minutes constituting hours and days.  Understanding and explaining repeatedly what constitutes an hour, a day, a week or even shorter or longer periods is very hard.  Understanding the phrases "slow down, we have time" or "it is not time" is virtually impossible. 

It is suggested by Dr. Eide that if one system is off  - it throws the whole network 'out-of-sync', explaining why so many different kids (sensory processing, ADHD, speech problems, dyslexia, etc.) struggle with their awareness of time.  And we know that Espen's system is OFF. 

Imagine not having a biological clock that actually works to tell you when to sleep or when to be awake.  An internal mechanism that alerts you to slowing down at the end of a period of wakefulness.  Not having a good internal system means Espen is in a constant battle with TIME.  Without a clear understanding of actual time, it is extremely hard to understand "being on time" or knowing when things start.

I can give him warning, countdowns and reminders but he lacks that basic understanding.  I can draw pictures, show him on a clock and spend unaccountable dollars of "fancy kid friendly clocks that light up, make sounds and show pictures" and we have every timer known to man (and a few only manufactured on mars) but he still has no awareness of TIME.  

It is not just small fractions of time that we have a hard time with.  We generally do not to tell Espen large events that are coming up for our family.  We don't talk about vacations, holidays or activities until it is nearly time for them.  It is not uncommon for him to wake up on the morning of a trip and just be told at that moment that we are going someplace.  Thankfully on this one thing, he is able to just roll.  We know when we tell him in advance that we spend a considerable amount of time with melt downs and concerns, anxiety and questions about WHEN.  We practice.  A lot!  Imagine how hard Christmas or birthdays are for us when he just has no idea about the passage of time or days and it just seems like an eternity.

Because of this lack of time awareness, our house has become fairly routine.  It took me a long time to get here because it is not in my nature to be rigid with structure.  We do the same daily sequence of things at roughly the same time.  We do it so there is consistency and he knows what to expect next.  It helps with meltdowns.  It helps us arrive to places on time and not stressed out.  We don't focus on the time it is when we do these things ~ we just do them in the same way each day.  We use cues he can see ~ my stop watch, the timer on the show he is watching, an hourglass.  For activities in the future, we use a dry erase calendar by his door and a family calendar on the fridge.  Since he can not yet read, I draw pictures for him for upcoming activities or events.  We don't make big deals about it, hoping to avoid the stress and questions.  He can see it.  The passage of the time is not the problem, it is the ability to see time passing.  It is the focus on the things RIGHT NOW.  IN THIS EXACT MOMENT. 

I am not the fastest ADHD mom around (although I can run and snatch a child out of harms way REALLY fast, try me).  As I lay with my beautiful, wide awake son at 3:00am answering riddles I thought about this thing called TIME.  It was on my mind because of a concept that I came across recently while reading What to Expect When You're Not Expecting ADHD by Penny Williams.  In this enlightening and empowering book she mentions 'time blindness'.  It made sense ~ being unaware of the passage of time.  Getting lost in the task or activity, not being aware of the environmental changes, not having a functioning biological clock.  At this moment, he wanted to GET UP and I was explaining for the millionth time that it was the middle of the night.  A time when mommy (and most NORMAL people) need to be sleeping.  For the millionth time, he could not grasp it.  He was wide awake and felt rested so we should just get up, eat some pancakes and play.  And he had some riddles on his brain ~ especially interesting to note that the best riddle he had was "what has a face but no eyes".  As I lay awake answering those challenging riddles, I realized that for him it makes no sense to say we need to sleep for 3 more hours or 30 more minutes. This notion is intangible ~ he can not see it, smell it, touch it so he can not yet understand it.  He understands this moment.  RIGHT NOW.  And he was awake ~ wide awake.  And if one is awake, one must discover all the world has for them. There is no TIME to wait, we must do it NOW ~ time blindness. 

I could not discover a reasonable answer to my dilemma with helping my child understand time.  Nor have I been able to figure it out some days later.  I can not grasp how I will teach him natural sleep rhythms (pray he never works irregular shifts).  I can say with out a doubt that I appreciate the knowledge I have gained this week about this concept of time blindness and how we will face it as he gets older.  It will happen when he is ready for it.  As with most things... time is what is needed. 

world of understanding

Our family struggles from a slew of different behaviors that are often extremely difficult.  We are not unique ~ many families have similar and harder struggles.  I choose to share our struggles.  The really hard ones, the funny ones and the CRAZY ones.  I share because it is important.  Important to me and to maybe just reducing the judging stares that come from many people still when my world is falling apart. 

Recently, a mom said "before I had kids with these problems, I was that one that judged bad behavior and wondered why the adults could not control the kid".... And I totally agreed.  Before Espen I was that woman too. 

I am now that mom that has a child who melts down.  I'm that mom who looks tired in yoga pants and running shoes (my child has always been a runner).  I'm that mom who is rushing through the store with a child in a hard hat and sunglasses dancing on the floor and shooting his imaginary gun at people.  I'm that mom shushing a non stop loud child so I can think straight.  I am that mom getting the curious glances and strange judging looks.  I am the mom with a child who is screaming about how I am hurting him when I hold his had because the feel of touch is grossly uncomfortable to him and the only word he can use to describe the level of discomfort is the hurt.  I promise I am not hurting him.  I am that mom.

I get it.  I have had my "ah-ha" moment.  Go ahead and look and judge us.  We are making it!

We are making it some days because I can keep one step of the wild and crazy with my own creative mind.  We make it because I some days don't care if I have on dirty pants and a mess of uncombed hair piled in a pony.  We make it because I don't sweat the stuff about dressing my kid in matching clothes or combing his hair.  We make it because we eat cold hot dogs, drink coffee and pile up  laundry for days on end.  We do alright even when the floor is covered with legos, the matchbox cars are lined up, the grass and sand are inside and the swim goggles are hanging in the shower.  We make it because I don't care if our shoes are muddy or there are crumbs in the bed.  We make it because I wrap my mind around living in a place that is different than what I imagine it to be. 

And that is the key.... I imagined I'd have a perfectly pristine little boy, who was smart and caring and funny.  Who loved school and his mom and who could play appropriately all the freaking time.  I imagined we would be social and do amazing fun things all the time and there would be little yelling, he would just get it.  I imagined I could go to the store with my family and shop or look and we would not have to rush out.  I imagined being able to eat at a restaurant or go on vacation with little issues.  I imagined I could have a clean house and a clean car and dress in clean clothes!  I imagined nights on the porch watching my child play. 

What I imagined is far far from my reality.  I wrap my mind each day around a different way to live.  I focus on the amaizing and entertaining and I just live a different way. But it is a decision I make every day.  It is a train of thought I have to have each waking moment.  It is a daily dose of accepting this life that is before me and not wishing for the other. 

While I openly share our journey, laughs and struggles it doesn't take away from the importance of it to us at this moment.   Our lives are a tornado of awe and wonder (some days we are just in awe that we make it through!).  I share because we still live in a world of silent stares and judging glances.  And for certain I want dump my burden of stress and fret out into the world and hope that the childless woman who sees me struggle in the store, gas station, drive thru, school line or where ever we are can just have a tiny bit of empathy for the situation.  It is far from normal ~ it is just the way we live. 

Spring Concert ~ Social Anxiety

We finally have figured out what is the next thing....  For our family things started out fairly "normal" and then we started having things happen, noticing huge differences and our world slowly started to exclude more people than it included.  Our first diagnosis was SPD, followed by ADHD, ODD and high functioning autism... on the radar that we can't rule out is learning disabilities, obsessive compulsive and anxiety disorders... 

He really wanted to join martial arts and we did.  He did great for the first month. Then there was a program and he got his orange belt.  It was at the auditorium. Lots of people.  He sat with the students and went on stage.  He never complained but had a terrible melt down afterward at home, had wet pants and slept with me for a few days.  He never wanted to go back.  So we have since stopped and paid it off, never to return and he is quite happy. 

He has not wanted to go shopping for any reason.  Not to any store.  I got him to the store this week because I gave him an afternoon dose of medication and he was in disguise (wearing a hard hat, sunglasses and super hero cape).  But he wet his pants and had a terrible night with very little sleep. 

Last night was the kindergarten/first grade spring concert.  I took him early from school and we went to therapy.  We relaxed in the sun and had a good dinner.  Then for over 2 hours I had to listen and calm the giant struggle that ensued.  Doug got home at the tail end of the struggles and was flabbergasted with what was happening.  He often only hears me recount the tales and doesn't' see first hand the drama.

Under absolutely NO circumstance did Espen want to go to the concert.  NOT AT ALL. 

I finally figured it out.  My beautiful, social little boy is really not that social... He has terrible social anxiety.  His fear of large crowd, strangers watching him and a new place were driving him crazy.  His fear of these situations is worsening.  He had wet pants.  A tear streaked face.  He was running wildly and screaming.  Crashing at me and into things.  He was fearful and anxious about the situation and did not want to go.  I was near the point of just texting his teacher and excusing him from the night.

But I put on my 'smart mom hat'... I offered him a disguise.  I offered him an opportunity to go as a spy.  Wear the spy gear, gloves, secret agent stuff.  Dress nice, comb your hair and wear sunglasses like a secret spy.  I offered to wear invisible walkie talkies so he could communicate with me in secret.  I offered him the chance to sit with me in the audience and watch and make sure there were no suspects in the crowd OR he could go back stage and provide safety to his classmates and I would watch from the audience.  We decided dad would be ready at a moments notice to get us out of there if it looked like the "bad guys" were getting close. 

This is how I got my child to the auditorium.  I wiped off his tear streaked face.  Helped him put dry pants on and a nice spy shirt (like daddy).  I helped gather up the spy gear and I even carried a black bag with all the stuff in it (as I explained he had to have his hands free but we needed to sneak the gear inside the building).  With just a few minutes to get myself ready, I grabbed a pair of jeans off the dirty clothes pile, took my pony out of the hair and did the best I could with it, put on a clean shirt and we were off.....  I was exhausted.  And really not sure it was going to work.  But it was the best thing I could come up with... a chance to go, to be brave (spy's are really brave) and to participate on any level, from any place in the auditorium. 

Thankfully he saw his classmates and his mind focused on them and less on the anxiety.  His teacher was not far and probably provided something he could really focus on that was safe.  He was able to stand on stage and sing and participate and he appeared in control and managing himself.  I was so proud of him.  Proud not because he was singing but because I know how hard social anxiety is and he did it. 

He had a safety gadget in his pocket.  He had wet pants when I picked him up.  He was frantic on the way home.  He cried and crashed and lost control.  And we rode the wave of emotions all over again but this time because he held it together and just couldn't do it anymore.  When we put him to bed we told him just how thankful we were that he tried.  We told him what we enjoyed and we left the rest off. 

At the end of my night, while I lay there listening to the quiet in the house, I realized social anxieties are what we are about to come face to face with.  Like an angry dragon rearing its fire breathing jaws at me... my son will face anxiety about crowds, strangers, new places....  It won't always end so well and I may not always be able to find a solution.  The incidents over the last 4 months, separately have not lead us to this point, but combined lead us to believe this is what is next. 

While it will be so much easier for us to just be home bodies and not try things, I will continue to do my best to help him be able to experience the world.  But we won't do it my way... we will do it his way. We may be spies or super heros or dinosaurs but we will do our best!  We may have to leave early.  We may look like we just battled a tweedle beetle... We will do our best and it will be good enough. 

pulling the plug

When it gets crazy it is best to just pull the plug. 

Over the last couple weeks we have had some weird and serious issues that I have only hinted at.  We have had to "reflect" on what has changed and what needs to be removed.  Espen has been getting into trouble for hitting and crashing and stealing from school.  At home, we are experiencing more crashing, running away and screaming.  He has been frantic and obsessive much more in the last week.  His safety planning is out the window, his sleep patterns and eating schedule are off.  His refusal to do activities that he liked has been challenging at best.  If we were on a roller coaster of behaviors, this is again the down hill side of it.

So we have pulled the plug on extras.  We have withdrawn from martial arts.  We have stopped going places in the evening.  We have limited iPad, tv and video games even more then we usually do.  We have cracked down on his diet and limited sugar and processed foods.  It is easy.  We don't allow much anyway!  We stopped the afternoon ADHD pill. 

Then a week ago I saw a blog about High-Functioning or Low-Functioning Autism.  I read it and have thought about it since. Not because of the high or low issue but for the helpful reminders regarding my child. 
 

Suggestions for Supporting a Child to Fit In While Valuing Who He Is

• Implement planned down time before outings or events where your child will be required to be around others.

• Think through options of how your child might “fit in” so that he is more likely to succeed in a variety of ways rather than to fail if he is not able to act as the world expects.

Example: At a family gathering options might include:
1) being in the main area of the house interacting with the guests
2) sitting off to the side in the main area of the house    playing on his iPad
3) inviting one cousin to play iPad games on the extra iPad in the den that has been closed off to guests.

• Provide opportunities for your child to participate in social events that are neurologically friendly to him such as visiting a sensory friendly Santa or going to sensory friendly movie theater. The idea is to balance the “fitting in” with times of honoring who he is, setting up enjoyable opportunities that don’t include the challenges that make it difficult for him to fit in with crowds.

• Remember being social is not rewarding in and of it self for most autistics. It is hard work. Consider rewarding this as you would reward any accomplishment of hard work.

• Provide access to other children on the spectrum so your child can experience a sense of community while free to be himself.

Espen has been diagnosed with "high-functioning" autism.  It is not "bad" enough to qualify him for ABA services.   It is not recognized by the school district but he has an IEP which helps him focus, learn and calm down as needed.  Most of the time quite honestly, I just roll with it and treat my child like a child.  For us, this is just a way of life.  We dealt with this level of WEIRD long before we had any type of official diagnosis.  So I don't really pay much mind to the experts, the school or others.  This is our child and we make the very best out of it. And we do it fast, on the fly and often change mid-way! 

BUT I often forget that being social is incredibly hard.  I forget that I have to provide him with down time as much as I provide him with social time.  I forget that "forcing" him to be interactive will often backfire and stress him out.  I forget that school is a long day of constant movement, activity, social things, focus and work and that at the end of his day, I better plan on just letting him decompress in his way ~ not mine!  I forget that a family night out is often to a loud, busy place and that it is just overwhelming and incredibly stressful. 

So as we think about what has changed recently that may spark this rash of poor behavior, we just pause.  We pause to listen to him when he says he just wants to be at home or outside or go to the country.  We pause and listen to his desire to go to the ranch or his buddy's who lives outside of town.  We hear him when he talks about places that he enjoys ~ the beach, the water, the pool, the creek.  Espen loves and thrives in settings that are removed from mainstream crowds.  We pay attention to what he will eat and we feed it to him.  We snuggle more and socialize less. 

We pull the plug on what we can and hope it regulates him back down.  I've boosted therapy from once to twice a week because it helps.  We plan a trip to Oklahoma and the beach.  We will stay home more then we go out.  We will get to the country as often as we can to quiet places.  We will not plan summer sessions for any classes.  We will help to center him back in hope of calming his behaviors.  And if this doesn't work, we will do what is next ~ whatever that is....

Holding Back a Year

Finally I can stop worrying (about this topic) and we can just move forward.  We have decided to hold Espen back a year.  There was no easy way to decide this.  It was not without lists of pros and cons and debates and observations and gut feelings.  It is not a decision made without fear of future repercussions.  And of course we had to consider his social ability to make new friends. 

We weighed all the possibilities and "best case" scenarios for weeks.  It kept me awake at night, brought me to tears with worry.  We considered his age, size, social skills and knowledge base.  We struggled with just constantly adapting his education to his needs or just giving him a chance to mature and be more able to acquire information. 

We have to creatively force practice times at home.  We write, read, practice in strange ways at strange times.  We encourage.  We read to him and let him try when he has the desire.  We limit screen time.  We surround him with support. 

We celebrate when he tries and fails or succeeds.  We have heard his frustrations.  We have witnessed the anxiety and stress when we have to do homework.  We have seen him struggle with even 10 minutes a day of writing/reading with us.  Some days his focus is misplaced and some days he is spot on.  Some days he just can't seem to remember the letters and if he can't remember them, he struggles with what they sound like.  Yet some days he is amazingly on task and receptive. 

We finally just said out loud to ourselves, let's hold him back now instead of being faced with this later.  Let's let his mind and body have a year to mature to being ready to accept what 1st grade can offer him.  Let's let him gain a bigger foundation in his time, which may just be slower because he is young. 

We arrived at this decision because for 5 years we have subscribed to the notion that when Espen is ready he will be ready.  He may not be ready when other children are. And conversely, he may be well past them at some tasks.  We have used this idea for virtually everything he has done.  He excels at some things and is delayed at others but when he is ready for it, he gets it.  So as we looked to his education and the future, we decided he is not ready.  Pushing him now may have weirdly troubling consequences later. 

We have informed the school of our decision and it has thus far been a smooth process.  For which I am thankful.  It eases the stress from my mind to find support there!  We will transition our summer a bit differently this year to ease him into kindergarten again.  We believe without any doubt that he will adjust fine.  We also believe with no doubt that he will do fantastic and be ready to receive the information and be more ready then for the next grades.