The First WHY!

 “The First Why”

Sometimes it is nice to have a reminder😊.  Patience patience patience.  Our timelines most likely don’t match up with our kids.  This alone can cause stress and chaos.  My son needed about 45 min to an hour just to simply gather himself to leave the house and get in the car.  If I didn’t plan for this time, it wasn’t going to work without major struggles and stress response behaviors.  He needed to gather his random transition items.  It isn’t easy, but it was necessary.  Otherwise we had huge behaviors that became more dangerous as he got older.  But if I planned, prepared him well in advance, took time to make sure he had “all his items”. ( and there was a lot of items, but it helped him feel safe).  This reduced behaviors when we had to pick up sister from school.  This was our predictable transition out of the house.

(No there was no surprise need to leave the house, and if we did yes it was always met with not just resistance, but literally a fight).  This is why we needed to plan our world around these issues.  So we minimized and made arrangements to support our son.  Throwing him into these situations that for most others were without much thought, created a firestorm.   We weren’t listening to him.  He was communicating through his behaviors that he could not handle the situation.  It was consistent.  We had a choice to listen to this and figure out the why that was lying beneath this behavior.  It was our job to figure out why this type of situation created so much stress for him and how we can support him to help relieve the anxiety and stress that drives his body to this level of fear and survival.  

But first we had to see him as our boy who is struggling needing our help.  Not as a boy who was being disruptive, mean or difficult.  He was not a bad kid.  He was not intentionally behaving this way.  He was not in control of his body and his response to what was happening.  His body took over to tell him he needs to survive and nothing else matters.  Was it really a life threatening situation?  No.  It was the simple action of leaving the house, getting into a car, and driving 1/4 mile to his sisters school to pick her up and bring her home.  That’s it.  Seems simple, right?   But this created so much anxiety and a negative stress response that it was never routine and never simple.  

This is a part of our autism world.  Our  sons autism and trauma world.  A world that overwhelms him and his body and has created so much chaos to be able to thrive and grow and enjoy life.  

But we listened.  We listened to what was happening.  We saw our boy as struggling.  We saw we needed to do things differently.  This included lessening the stimuli in his world to help get him into a calmer state.  A state where he could exist. Where he could breathe and just co regulate with us.  It was simply being together.  Following his lead.  Seeing what he needed which was always expressed through his body.  It took us awhile to understand this.  Unfortunately we were led by “experts”  down the path that he was being intentional and purposeful in his behaviors.  But he wasn’t.  His experiences led him to this place of fear, distress and need to fight for his own survival.  It goes all the way back to his first days of life.  He was in pain.  He experienced chronic pain for several years.  We knew this.  We knew our baby.  The way he cried was different.  It was pain and absolute distress crying.  We knew.  Unfortunately too many around us didn’t listen to us.  But we didn’t give up.

We had to get our confidence back to understand that we did know our child.  Yes, most experts , professionals didn’t understand.  Nothing made sense to them.  Therefore it wasn’t really what was happening.  Professionals do not like when things are unfamiliar and not textbook or neatly wrapped up in a clean box.  Therefore, we were wrong.  But we knew better.

We knew our child.  Unfortunately leaving our home, for any reason became a major obstacle for him, shortly after his big cecostomy surgery and 2 week hospital stay at age 4 1/2.  So much that it drove his behaviors.  And rather than forcing this scenario that clearly was so distressing to him that his body took over and was in survival mode, we had to listen.  We had to see what was happening.  Why was this so difficult?  Why did he feel this way?  What was happening inside his body to go to his downstairs brain that felt so unsafe he needed to either fight, run away or hide to not go into this situation which was leaving our home environment?  These were our questions.  These were our questions for the professionals that we were always met with wonder, confusion and “I don’t know” responses.

This is why I started Paradise In A Bubble blog.  It is a diary of our days.  When we stayed home, didn’t see others (anyone outside our family unit that lived in our home), kept things predictable, same, calm and when we did this we saw our little boy.  This helped him be a little boy.  Knowing this, and seeing this pattern, why would we not do everything to support him even if it meant disrupting what society calls “normal” living?  Yes, most did not understand.  Many thought we were crazy and even being unfair to our girls.  Many expressed their concerns that we were creating the dysfunction.  Rather the “ dysfunction” was there from the day he was born because of his medical needs and hospital visits and doctors appt.  This was not created by us.  This was our response to what he needed.

  It looked different than what most people consider to be “normal”.  Well, when you have a child who is very sick, there is no “normal” .  You create your new normal.   You do what you can to provide for your child, to support your child, to respond to his needs, no matter what that looks like.  And that is what we did.  

We created a world where he could exist.  Where he could play, where he could relax, where he could grow, thrive and feel happy.  The paradise in the blog name refers to our little boy being happy.  This is paradise for  a parent.  I say it is in a bubble because until we created a world around him that was one that he could feel calm, that was predictable, familiar, full of regulating moments; a place that provided  him with a feeling of safety because without this, he  just couldn’t breathe essentially..  He could not be calm.  He could not be attentive.  He could not exist.  He would be so dysregulated and trying desperately to figure out how to process everything external to him.  You could see it in his eyes, in his body.  And eventually in his behaviors.  

Whether he was fighting (for no reason, literally just melting down) ; or him literally running.  Running anywhere in any direction without any sense of his own safety.  His body was just getting “out of there” and it didn’t matter where.  Just not where he was.  This is frightening as a parent.  He has run in parking lots never noticing the moving cars.  He has run out of doctors offices, down the busy street.  He has run away from schools and was found hiding in the bushes about a block away.  He has run away at night and we found him hiding underneath a neighbors car.  He has run away and was found by friends helping look for him.  He had gotten almost a quarter mile away and was up on an overpass walking somewhere.    These experiences are so scary for us and for him.  How can we not do everything possible to figure out his “Why?”.  His “why” was perplexing to all the doctors and therapists.  His “Why” caused him so much distress that he wasn’t developing and thriving as growing children should.  His “why” was at times terrifying that we had to do everything in our power as parents to help figure out his “why.  His “why” was like the golden ticket to his success; no matter what that looks like.  I am pretty sure if you ask any parent what success for their child looks like to them they would respond that it would look like joy.  

I would describe it as a joyful, present child who explores their world, is curious about the world around them, is thriving in someway;  a child that is changing and developing new skills, making some level of progress, any progress, big or little, just something.  The basic life functions that we do not even think about, such as eating when hungry, drinking when thirsty, sleeping (any type of sleeping ).  These basics did not come naturally and were quite difficult for him.  Why?    

His “why” in the beginning, by day 5 after he was born was pain and discomfort.  We knew that.  “Why” the pain was something we wouldn’t fully understand for several years.  

But it was our first answer to the first “why” question.  We still had a huge journey in front of us.  

That is why we never gave up hope.  Hope for him.  Hope he would see joy, feel joy and share joy.  That was all we wanted for him.  That is all we hope for him in his future.  And we will never give up trying to support him, to continue to follow his guidance and cues to what he needs.  We will always try our hardest to provide a safe, supportive loving connected environment where he can simply “be himself”.