A look back and how we started to look forward

 Thought I would share one of the first blog posts I made when I first started this blog.

It is important to remember how far our family has come, how far our boy has come.  So much progress.  It is a bit weird reading my inner thoughts from years ago, and what our daily life routine was like, or what it wasn’t like.  

These experiences are why I blog.  Why I share some of the more difficult moments of our autism world.  Why I reach out to support others.  Once upon a time, as you will read, I literally felt so alone in our day to day struggles.  Finding others who “get it” makes a difference.  Plus if I knew then what I know now, if I had access to resources maybe things would have been different.  Or maybe just not as difficult.  Who knows?  

I do know we did the best we could with the information we had.  But wow, to see how the research and understanding about Autism, Sensory Processing Disorders, anxiety, bowel disorders, cecostomies, behaviors, behaviors , behaviors....oh boy the information about kids who are aggressive, struggle to regulate, how trauma effects the brain development in those early years, and so much more.  

Would we have done things differently....absolutely.  We always were seeking the WHY.  And no body could ever help us understand the why behind or beneath the behaviors.  But that has changed.  We did change the way we looked to our child.  We knew if we followed his lead, maybe that would give us some insight.  We took him out of school, we ultimately stopped ABA (that’s another revelation that I wish we learned before we ultimately did).   He and I played.  I played with him.  We played Uno (one of our favorite games), we played legos, we built volcanoes that erupted, we hardened together, we cooked together, we played with the dogs together, we built things like chairs and tables together.  

Curriculum, formal schooling, worksheets, textbooks, homework, writing, math....none of that happened in the formal sense that we think of in school.   

He wasn’t able to do that.  I had to meet him where he was at.  I had to do what helped him.  I had to step back to see how to best support him.  

I think it was the most effective and critical “therapy” that actually made a difference for him and for us.  We existed.  We were present.  We were a we.  I call us Team Ty.  We were learning together.  We had no expectations, no demands on him.  He needed this.  He needed us to understand this.  And this is why following his guidance led us to actually seeing him make progress.  

Here is the post from July

My mornings.....

well, a typical morning in this household. Ty is already onto a nap by 7:00am, usually for a few hours (nice respite). Girls playing quietly, my soft tunes of piano or guitar playing- time to make my coffee..... had to give up Starbucks a few years ago- Ty just couldn't handle getting into the car and even just going through a drive thru.... it didn't happen without his anxiety getting the best of him and then him lashing out with behaviors and even at times trying to escape from the car... so that wasn't going to happen anymore. But my good ol' Mr. Coffee Espresso maker has been quite faithful the last 2 years- everyday, making me my cup of energy- I make my own Peppermint Mocha- and it allows me to use Almond milk. It's delicious! I look forward to it every morning... kind of sad, huh??? I guess it's my ritual. But drinking my coffee, listening to calm music, and things actually quiet in our house for the time being- allows me to breath for just a moment - before the rest of the day begins. Now, as some of that history I mentioned in an earlier blog, this blog to me is like my diary- and a place to share my fun craft ideas, recipes, and support for others who have struggles everyday, like our family. Because unless you know what it's like to deal with constant chaos, constant conflict, constant behavioral problems, constant medical needs, then it's hard to understand what some families in this country go through. And dealing with it everyday- well all I can say is it's hard-even on the greatest of days.... it's still so hard. Our great days are still filled with conflict. I just consider it like this, hey he only screamed at us today, I wasn't hit. Yes, my son age 9, who has autism, PTSD, Mood disorder, ADHD, Reflux, asthma, bowel motility disorder that requires nightly irrigation through a devise that is external in his colon, has probably been in the hospital more then at school in his lifetime- anyway, he has major aggression, behavioral meltdowns and major sensory processing problems.... and this is where my "paradise in a bubble story" starts. I do wonder if there is another family somewhere who deals with what we deal with. There hasn't been one specialist who hasn't said to us, well, he's very complicated. And this is in terms of his medical problems that are poorly understood, his mental health....everything. But also our society loves to put people, kids, everything neatly into a nice little box, so that they can fix it. And if you don't fit into this box, hmmm a lot of head scratching begins, many over the years have blamed us as parents. I'll save those stories for later. But We love our son, are committed to our son and our family, and we promised him a long time ago- that WE would never give up on him - as so many others have (professionally speaking). He can be the most generous, loving, sweet little boy- but his world is really tough, so tough that leaving our house- makes him literally try to crawl out of his skin. Think of it this way- he is allergic to the world. So our bubble is what we know helps him to be the little boy God intended. He is just a little boy... and has been through more in his short life, you can't even imagine. But like I said, we will never give up on him. well, behaviorists will be here in a few minutes, so better start my day and I pray today is a better day. He's just been really off the past week... and we have to really focus our energy into helping him. Helping him deal with life, deal with coping, deal with everything that happens throughout the day- because he has no coping skills!!! And when you're 9- ummm yeah, kind of tough- and throw major sensory problems, umm yeah, kind of rough, my sweet boy- we just love to see him smile and laugh and be a little boy- and that's not easy. So my day begins- and pray it's a better one!

Attention seeking or Connection seeking?

“Attention-seeking is not a negative thing. It’s a signal that a child needs you. Maybe not at that moment all the time, but they need you. More than they are getting you now. It’s a signal to plan some special time with them. #parenting #kids #family #connection”- Dr. Emily King

Parenting your own path

What is your experience?  My kid has always been “attention seeking”; he has high anxiety, sensory issues and past trauma experiences that create a very uncertain world for him which is hard for him to feel safe, to make sense of his environment and process everything around him. 

 “Attention seeking “ is just an ABA term to describe behaviors that behaviorists see as inappropriate and something to “get rid of.” 

Replacing the behavior is now the goal, yet it is done without understanding the “WHY?” of the behavior.  But we must understand  what lies beneath the behavior we can see.  We were told this so many times by my son’s behaviorists, but ignoring him or trying to replace this behavior with something else, without even understanding what he is trying to communicate to us, only created more issues because we were not “listening” to him.  Yes, it was communicating through behaviors because he wasn’t capable to communicate any other way. 

We were told to ignore him, otherwise he will see it as his behavior is getting what he wants.  When in fact, this is not the case.  

His behavior was trying to communicate he needed to connect with us.  He needed us to help him feel safe and co regulate through our presence, compassion and calmness.

His behaviors were his only way to communicate this need.  Ignoring him was rejection and only exaggerated his need to feel safe and connected.  We are his safe loving trust worthy caregivers.  Turning our back on him sends a very strong and scary message that we are not his safe place or trust worthy.  This can have long term devastating effects on the child and the parent child relationship.  

So if we call it “connection seeking” rather than “attention seeking”, it shifts our mindset to seeing our child as struggling, needing our help; not being a problem or intentionally misbehaving.  It really makes a difference

He is having a hard time, not giving us a hard time

 FB memory Oct. 9, 2016

After what seemed to be a really good start to our day,  the pizza i make over 20times a week because thats what he eats was not made right according to Ty- ."too much sauce and the cheese doesnt go all the way to the edge"       

And so it got dumped on the floor of the family room. And his BIG cup of water also got dumped onto the carpet.....,seriously???  All i can say is WTF?   I hate Autism ...

FB memory Oct. 9, 2016.   (Later that day)

And there goes the clean laundry.....wish i could be inside his mind for just one minute....to better understand what the REAL frustration inside him is about. 

Funny thing, at least he didnt attack me....because that is the Autism many of us deal with.   Sigh......

FB memory Oct 9, 2013

Happiness is hearing my little guy in the kitchen, talking through the recipe for pizza crust.  Listening to him read it and hearing him say "thanks" to Sarah when she offered information on where the oil is. 

 It's these moments that we treasure!

Ahhhhh.....

I do like seeing when memories like this pop up.  It is the reminder of how far our family has come.  It is the reminder that we tried our best.  We tried to provide a loving safe and compassionate home for all our kids.  It was never easy, but is parenting ever easy?

We made the best with the cards we were dealt.  Always trying to make the most of every situation.  Always knowing the bad moments would end, and celebrating with glee the moments like in the memory from 2013.  Those are seared into my memory.  I try to keep those amazing memories front and center in my mind.  My kid is no longer a little boy.  He is a man.  I remember when he was younger and how much him turning 10 scared us.  We just could not even imagine what things would be like when he was 10.  Now he is 16.  I could never have predicted the trajectory of our life, his life.  Looking back at the laundry thrown everywhere, but it was a behavior that he didn’t attack me.  Or the pizza and his very high need for it to have been just right, and when he felt it wasn’t, it was tossed.  Again, food thrown, water everywhere, but he did not attack me.  Those years were incredibly hard.  We were in constant search for the why!   That was always our number one question, why????

We did know a part of the why.  And we were right all along.  We ultimately did trust our instincts.  Following his lead, gaining his trust, meeting him where he is at any moment of time. Recognizing his subtle cues before the explosion.  Lowering demands.  Understanding when he is struggling that he isn’t in control and he isn’t doing it on purpose.  Being present with him to enjoy the happy moments like when he and Sarah were in the kitchen together, and being present with him when he is struggling and not in control of his self like the memories in 2016.  This lens change allowed us to see our boy as a boy who is having a hard time and needs our support and compassion.  Rather than a boy who is being intentional with his behavior and is in control.  He is not giving us a hard time.  

It makes a big difference.  He still has hard times.  But we know when this happens, he needs us to support him with our connection, co regulation, and our compassion.

I may not understand it, but I always respect it

  I really like how this OT frames the idea of forcing eye contact.  It should never be a goal for a child.  It is never appropriate.    When kids feel safe and connected, and are in a regulated brain state many things including eye contact happen organically.  You can never force it.  And if you try, you can create many other issues for the child.  

I personally understand this eye contact scenario.  When I am in a crowd, maybe a party or conference full of people, ( this is definitely a pre children and autism world scenario. Lol) and there is a lot of talking, music,  or just a lot happening around me, I have a hard time focusing and especially holding a conversation.  In fact, I typically look down to try and hear better.  It helps me focus and process and help block out some of the background noises.  It is really hard.  But certainly I would not be making appropriate eye contact in a situation like this.  Understanding this about myself, and my own sensitivity in different environments has brought me a greater understanding and appreciation for some of the things my son goes through.  And even if I don’t understand it, I respect it.  

We all do the best we can and we all are so unique in how we process the world and how the external world impacts us that without a greater appreciation for our differences, we will continue to potentially cause harm to a child or adult that doesn’t meet an in realistic expectation.  

Do not force eye contact.  In fact, forcing anything is never helpful.

Original FB post by Greg Santucci, OT:

No, Mr. Miyagi, DO NOT FORCE EYE CONTACT!

The Autistic child in your house, or on your caseload, should not have a goal for eye contact, and eye contact should not be forced.

Eye contact happens organically when the child feels safe enough, and regulated enough, to make eye contact.

Requiring eye contact is ableist, and hypocritical.

Remember when you were driving in a new neighborhood and LOOKING for that street address? You turned the radio down to do it.

YOU decreased the auditory stimuli to focus on using your vision. YOU turned off one sensory system to heighten another, yet YOU are forcing a child to use a sensory system against their will?

And if someone cranked up the radio in defiance, you might yell "hey, I trying to concentrate!"

Well, HEY! They're trying to REGULATE! 

Please remove eye contact goals from any intervention plan.

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”.