The day went from my tool belt to my medical kit

The last few days have been hard.

They have been reminders of what my boy faces everyday without complaint, until he can’t.

The anxiety, the discomfort, the PTSD that is so ready to grab hold of him by the smallest of triggers.

The frustration, the need to gain control, the unknowns and what if”s that plague his being.

He wants me to solve it.  He wants me to fix it.  He wants me to have all the answers.  He wants me to make it go away.

I wish I could.  I would in a heartbeat.  But I also see him trying.  Working through the discomfort.  Coming up with ideas and his own what if scenarios.  He is problem solving for himself.  He is processing all this stuff that happens to him.  I even heard him for the first time tell me about a feeling that I have never heard him describe before.  I am sad he has to go through this.  But damn, I am always so proud of him.  

These are the moments that I dread as a mom, but cherish because I am his safe place.   The moments where he wakes up,  not feeling well, and he wants me to help him.  He is confused by what he is experiencing.  He would much rather “be sick” than have his bowels causing his symptoms.  

But he and I both know all too well what his symptoms point to.  Bowel impaction.  

He and I know all to well what has to be done.  Bowel clean out.

He and I know all to well the possibilities that he may face from this moment forward.

But as we always have told him, we will always do everything in our power to help him at home.  Use every trick in our medical manual of experience to clean him out at home.  (Quite honestly this is when I am so glad he still has his cecostomy button.  It just means we have more capabilities to help him at home and avoid surgical clean out).

He asks lots of questions.  He wants answers and for me to tell him what is next.  But I know better.  Boy do I know better.  Reality is he needs the control.  He needs to make the decisions on his own.  He needs to do what he feels is best.  I learned a long time ago that the trauma he has is always associated with me because I was always by his side for every hospitalization, every blood test, every X-ray, every barium enema test, every nasogastric tube placement, every surgical bowel disimpaction, every time he was wheeled into the operating room, and every time he opened his eyes when coming out of anesthesia.  

I was always right by his side, holding him in my arms when he was little, nursing him when he was really little, and laying next to him in those very uncomfortable hospital beds.  So every experience he had medically that was traumatizing to his mind, body and soul; I was with him.  I wouldn’t have done it any other way, but it makes our relationship a challenge when he struggles to process essentially “why did you let them hurt me” which is how a little scared boy perceives those experiences.  They started when he was so young, this is what trauma looks like.  

So for both of us, even though it isn’t as frequent, it is no less scary; for both of us.  I hate seeing him hurt.  But to see his growth and processing little by little.  For him to see he has the control, I’m just beside him following his lead is something that makes me smile.  

These are the very hard lessons I had to learn the hard way.  Unfortunately it was the opposite of all the professional advice on how best to support our child.  Their advice only made things worse.  This wasn’t a typically developing child.  Without taking everything into account, his experiences from birth, through those early brain development years, to preschool, age 5, 6, 7.   What his life experiences were in all those early years was pain and hurt mixed with our love and compassion.  That is really hard for a child to process.  

But I understand this role.  I understand that even though I was there to meet all his needs that I could as his loving mom, I couldn’t prevent the pain and the hurt.  No matter how hard I tried.  It took so many years for doctors to listen, to figure out what was going on, to help him.  By that time, the damage had been done.  We knew it.  You could see it in his eyes.  

So when he comes to me in the middle of the night, complaining that his stomach hurts, his side is cramping, he feels nauseous, my heart sinks.  But I also know he needs me.  I have always called us “Team Ty”.   We are a team.  We make a great team when this situation comes up.  We get things done.  

The first day of trying to clean out his bowels at home, he decided, yes that’s right, he decided he wanted to drink the magnesium citrate liquid rather than putting it through his cecostomy site.  He told me, for the very first time ever, “he doesn’t like the feeling ( yes he said feeling) of the liquid going into his site”.

Wow wow wow wow wow.   

That was a huge milestone in his ability to effectively communicate something that is happening inside his body.  I literally turned away to smile with huge mama pride.  Reality is I couldn’t let him see that joy, it would have ruined the moment and he would have misinterpreted it for sure.  I do know my boy.

Anyway, a crazy week. We have a few more days to keep trying to clear his bowels at home before we have to talk next steps.  Fingers crossed it works. Because although it has again been 2 years since his last hospital visit, these experiences set him back emotionally and physically.  They are hard.  But 2 years is better than the every 6 mo as it was for so many years just up until 4 years ago.  

Maybe it is a good thing that we decided to take on a build project.  It is kind of the stress relief both B and I needed, plus it has given us something to focus on together.  That’s always good for a marriage. Better than therapy. Lol

    We are building an “office” shed so that B can move out of his office tent in the backyard.  The pandemic isn’t going away anytime soon.  He is fortunate to be able to work from home during this time.  So as we just got the perimeter of the foundation done, I’m literally working with my saw and my drill, Ty calls me, needs me.  I have to take off my tool belt and get out all my medical supplies necessary to do his bowel flush.  

As I was prepping his kangaroo gravity bag, cleaning tips with alcohol wipes (which by the way the smell of rubbing alcohol is a huge trigger for Ty.  It always reminds him of the hospital.  He calls it the hospital smell).  Anyway, as i am prepping, pouring his solution into the bag, he is over my shoulder freaking out in the only way he knows how, to be mad at me.  I just hate when it starts to regress to this.  It breaks my heart for him.  But I know he doesn’t want to.  He is dysregulated, elevated in his anxiety, and now the smell of rubbing alcohol and knowing what is next is just now screaming in his mind.....TRAUMA TRAUMA TRAUMA

Everything goes wrong, everything is my fault, everything is awful.  I can only show empathy and compassion and patience in a non verbal way.  Right now words are an assault on his senses.  Words,  no matter what they are, make things worse.  I can only communicate with my body language and my eyes.

Our eyes are the way he and I have always communicated.  When he was in the hospital when he was so little, 2 and 3 and 4....and he needed blood drawn, or anything even having  the routine nurses check that was done like every hour (ugh).....I would sit with him, on the hospital bed, holding him close to me, and tell him to look at mom.  Look into my eyes.  Focus on mom.  Look deep.  His eyes always showed so much fear.  It was so hard to see.  But I would share my strength.  The only thing I could do was be present in that exact moment with him.  So I was.

His eyes still show the fear.  He still experiences the fear.  I know this because of how frustrated and angry he gets at me when I am simply pouring the solution into the gravity bag.  When I ask him gently if he wants me to hook up the extension to his cecostomy button or does he?   When I ask if  he wants me to start the flow of the gravity bag or does he want to do it himself?   When I remind him how to slow down the drip to ease any discomfort so it it’s flowing rapidly into his bowels.  And I am just met with frustration and anger.  This is how I know he is scared.  

It is never easy, 16 years later.  It is never routine.  It is always traumatizing on some level.  It is always heart breaking.  

I have no idea what today will bring.  I will get some work done on the shed.  I love using my tools and building things, anything.  Hopefully I will be regulated enough to share my regulation and my calm to support him and whatever the day brings his way.  I’m pretty sure it will be a 3rd day of mag citrate.  And hopefully it will bring the relief he needs and clear him enough to not have to go to the hospital.  Fingers crossed!!!!!!

Covid-19, parenting, and special needs! Does it make you want to scream?

Covid, parenting and special needs!!!!   Does it make you want to scream?

You wouldn’t be alone!!

Our children are going through something that we, the adults don’t fully comprehend.  We are all learning how to manage together, rather than being able to be the guide for our kids.

Behavior is communication.  

So our job as the adult is to figure out what the child is trying to communicate.  

Sounds easier than it is of course.  

Part of this is also understanding that many of us have maintained an expectation level for our children from before Covid.  

But what about when we see an increase in behaviors, acting out, defiance, non compliance , these are all just words to describe “ a child is having a stress response “?  Then what?

Well, it starts with us, the adults to begin to think of of our kids as not misbehaving, but struggling.  This leads us then to see them as needing our help.  

This lens change to see them as struggling, and needing our compassion and empathy is a necessary step to move on to the next.  Which is, how do I best support my child?   

Parents need to understand that keeping the expectations on a child that were the same as pre covid, is a recipe for struggles and challenging behaviors.  

When children are struggling, they are not able to regulate their emotions as well, if at all.  They rely on us, the adults who love them to be the calm they they are struggling to find.  

Even for kids who never struggled before covid, parents report an increase in challenging behaviors from these kids.  That is why we see so many reaching out, looking for support, trying to understand what is going on with their child.  

What helps is to see a child through this lens of needing our help, not with judgement, and to recognize the need to lower the demand bar for this child.

Lowering expectations helps because these outward behaviors (also known as surface behaviors) are how our children try to tell us that they don’t feel they can meet this demand, expectation, and it is up to us the adults to help them co regulate.  

This means as adults we must be aware of our own regulation, be in a calm brain state, to be mindful of ourselves...because our children need to feel safe and need us to be this calm that they are struggling to find.  Adults are much more capable of recognizing their own state of regulation because our brains are more developed.  

For example,  a 10 yo childs brain is cycling in and out of brain states and does not have the maturity until almost the age of 25 to respond to stress with a logical approach and kids brains tend to respond with an emotional response.  This is all normal.  However when a parent sees unusual behaviors, struggles that are worrying, it is a signal.  This is happening for so many families because this pandemic has thrown our entire world as we all knew it into a storm that just keeps spinning and spinning with no end in sight.

Lowering expectations, connecting even more with your child through activities, play whatever your child is playing and follow their lead, snuggles, reading, or just being present can make a huge difference to their feelings of safety.  Setting aside 30 min a day to connect with your child, even our older kids who think they don’t need this, will enjoy time with a parent and can help them manage the stress better.

Our kids world right now is out of control.  We know because as adults we feel it too.  Let them have control over things that make sense.  

Let them play, kids will usually express what they cannot verbalize through play.  

Most importantly our kids just need us to be there for them.  To be present is so important during these times.  And although I hear, “well I work, so I am always home, or always around, “  the reality is it is more important to actually be present with your child.  Being in the same space, house, etc isn’t the same as connecting, engaging, and being mentally present and available for your child.  

This is what will get both us, the parents and our precious children through this global pandemic.  Re evaluating priorities may be forced upon some of us, but it doesn’t mean we can’t learn how to best support our kids, and our families so that we all grow and thrive as families and as individuals.  

We all could use a lot more kindness, compassion and empathy to come out of this pandemic with a sense of renewal of the body, spirit and the mind.

Our kids will be okay if we model compassion and kindness.

There is no defending ABA with what we now know about brain science

This was my response to people defending ABA.... it kind of gets me fired up.  After 4 years and 30+ hours a week of in home ABA, I really think we saw it all.  And unfortunately it was mostly bad and traumatizing for my son.

ABA is  causing further problems and trauma for way too many people.

 The business of behavioral health is one that uses the reward consequences behavior system,  planned ignoring (Dr. Mona Delahooke has a great blog post about this June 2020). 

 It is about compliance and punishment for non compliance.  

It does not even consider the current  (last 20 years) research of brain science and that kids who struggle ( adults too) are responding from their downstairs brain. They are not able to regulate themselves. 

 They dont feel safe. 

This is not something that can be trained out of a human. Stimming is a way to regulate,  and ABA views it as "not acceptable or appropriate behavior, and it needs to be replaced with something someone else deems more acceptable. 

 Behaviors until they are understood are always needing to be extinguished, under the ABA theory.  This assumes the child,  person has control over their behavior and they are simply "choosing " to misbehave,  to not comply with a demand,  to not meet an expectation.  And then this behaviorist decides what consequence the child must receive to "learn their lesson". 

The polyvagal theory and other neuroscience research explains how the brain can falsely interpret sensory experiences, environments,  and as we already know the neurodiversity of so many, the brain is just wired differently leading to a wide range of processing for things that literally a neurotypical person does automatically without conscious thought. Not so for those who are ND.

  Until we see the brain of neurodiverse people as processing things differently,  and this isnt bad, it's just different, and also to understand the WHY for kids who struggle with behaviors as kids NEEDing help, needing support, needing connection and lowered demands placed on them. 

 Our experience with ABA over many years and with so many Companies and behaviorists  (because of the high turn over, which is also problematic),  but their lack of understanding of how they escalated my son.

  They had too high of expectations and showed no flexibility in their approaches that then escalated situations which then "required" restraint because somebody “could get hurt”. 

They escalated him and then he was made to suffer the negative consequences because they didnt understand the fact that he could not regulate himself.  He has experienced trauma in his life, has a hole in his colon and has Autism.  He needed so much support, not criticism or judgement. 

  He needed to feel safe and their approach of constantly placing demands on him to teach him when he was dysregulated,  was falsely presuming competence when his behaviors were communicating he needed a safe, calm adult to co regulate and help him. That's it.  

That's the simple brain science. And no amount of rewards or punitive measures can change the brain response of a child who is dysregulated and struggling.  It really is that simple.   

We had people tell us when my son was 5, 6 7, 8,  9, 10 that he is violent,  dangerous,  and should be placed in residential.  This is absolutely insanity and we knew our son. Behaviorists and behaviorism is not using the most current research and science and is contributing to behaviors we see in kids who struggle.  

 These kids are not appropriately supported and then are blamed, punished and blame gets directed to their parents for “not following the program, not being consistent”.  This is so BS and is way too common.  That’s all I’ll say on this.  

For the  few exceptions  in behaviorists, there are not enough when the standard theory behind behavioral health is one that seeks to change the person, to train behaviors like a puppy and truly is inhumane way too much of the time.  

We now know better, it is time for everyone to do better and stop this cycle that is only further holding our kids that are neurodiverse back.  Time to change our lens to “kids do well if they can.  And if they can’t, WHY?” as Dr. Ross Greene always says.  And our mindshift to what has happened to our kids? Not what is wrong with our kids?   

Does the ABA technique of “planned ignoring” work?

A great post from Dr. Mona Delahooke, PhD.  I agree with her that this approach of “ planned ignoring” for many kids cause things to get worse,  not better!   

https://monadelahooke.com/the-hidden-costs-of-planned-ignoring/

We must use the  current research related to neuroscience when it comes to behaviors.  The brain and the body are connected.

  Why are we still using outdated theories that these kids just lack motivation; these kids just need to be taught more adaptive replacement behaviors; that these kids have learned that certain behaviors get them what they want.  These are literally puppy training techniques being used on our children.  When my son was receiving ABA, 30 hours a week, “planned ignoring” was one of several  inappropriate “tactics” to gain his attention, get him to comply to a demand, to reward an approved replacement behavior and try to extinguish the behaviors that the behaviorists didn’t think was appropriate or useful; of course all without even knowing my child.  

This approach of ignoring him always escalated him.

  For a child who lives in a state of constant fear and uncertainty about his entire world, this ignoring only created a scarier world that he had to figure out how to exist in.  This led to an increase in his anxiety and caused more challenging behaviors because of his constant triggered state of fight, flight or freeze.  

I questioned the behaviorists repeatedly on its effectiveness.  

Why would we ignore him when he is clearly trying to communicate?  

His behaviors have always been the warning signal of frustration, distress, confusion, and pain.  

For a child who literally  has a hole in his abdomen with a port opening, how can we ignore the possibility that something may be wrong?  

We always saw an increase in his behaviors and struggles when his bowels were “backing up”.  It was common for him to not feel good for weeks before we ever really realized it.  He never said, “I don’t feel good.” Or “ I hurt, my tummy hurts, or my head hurts.”   Nothing.  

These signals were not processed in a way that he could put the feelings into words.  He still struggles with this.  

There was and is a disconnect.  Mixed signals between his body and his brain.  So what would happen if we ignored his attempts to communicate?  Yes, it wasn’t through words; it was through his behaviors.   But what are the possibilities if we ignored these warning signals?

We usually saw more challenging behaviors when he wasn’t “feeling quite right , or something was off”.  It wasn’t until these struggles increased and we saw other signals, such as poor appetite, lethargy, and many times vomiting did we know he actually needed medical attention.  

But what if we didn’t pay attention to these “warning signals” as behaviorists instructed us too?  What if we punished him through “planned ignoring” to gain control and compliance from him?  Even thinking about this makes me sad because we did listen to the professionals and we did attempt the “ignoring”approach.  But most often it was not effective.  

It only increased his challenging behaviors. 

It escalated him to try harder to gain our attention.  

When a child has known so much pain, and fear due to medical issues his entire life, which created trauma, chronic fear, anxiety and confusion how could we ignore him?  

How would this help him in anyway?  How could it possibly teach him anything?  This does not teach him more “appropriate” ways to communicate?  

The neuroscience, the Poly Vagal Theory that Dr. Stephen Porges has described through his research has helped us understand it won’t.  It can’t.

  Until his body can regulate, be successful to co regulate with us, he will continue to experience fear, anxiety and fight as if his life depended on it.  For my kid, this is exactly what was on the line.  His life.  He had to fight.  

Autism  complicated his world because he has not been able communicate in a way that others can understand.  When he doesn’t feel good, he doesn’t know how to connect the feelings to words.

  Or when he tries, we have found his brain mixes up the words or chooses words that to others doesn’t convey the message he is intending in order for his need to be met.

  This has led to its own set of challenges as one can imagine.  For example, he will say I’m thirsty. Seems simple.  Those words to me tell me he wants water.  We 

  We now know to ask clarifying questions, because he may say he is thirsty, however the word “thirsty”  tells us one thing, but to him his choice to use the word thirsty was in fact not what he was trying to tell us.  For this example, he was cold.  Not thirsty.  

But to him, he thinks he communicated to us his need, yet we do not help him with this need properly.  We  get him some water.  But remember although he said thirsty, he meant cold, therefore needed a jacket.  Confused yet?  

This is exactly why ignoring any attempts to communicate should not be ignored.  Our kids are trying.  They really are.  

Can you imagine constantly communicating and everyone ignoring you?  And when you use “words” your brain thinks it is saying what you need, but in fact what comes out for others to hear is not that need?  So then it seems like people are still ignoring your attempts to get your needs met?  

This is exactly why we must use compassion.  We must help them feel calm and safe.  We must connect with them so that they can regulate and thrive in life.   

Our kids need us. They want to trust but it is hard.  Connecting with them will help build the relational safety they need.  Planned ignoring doesn’t do this, in fact, it many times makes things worse.  

Reflection on past 4th of July’s

Fourth of July 2020 is clearly unlike any other.  

The Covid 19 pandemic has  kept us from any celebrations and has turned life as we knew it upside down for the last 4 months.  

But for my family, it isn’t so unusual to be isolated; to keep our existence  in the outside world to a minimum.  

To find creative and joyful ways to get through the days in the comfort of our own little homestead.  

Paradise in a bubble, as this blog is called is the world we created out of necessity for our boy who struggled so much to exist outside our bubble to the point he wasn’t functioning, thriving, growing as all children should.

His nervous system was damaged.  His nervous system could not regulate his body.  His nervous system caused him to experience great anxiety, stress, pain that he could not live as a little boy.  I learned this is called “faulty neuroception”.  

He could only exist in fight or flight.  Or worse, freeze and collapse.

His experiences from birth with chronic pain due to severe bowel disorder, or his developmental delays, or his experiences of being in and out of the hospital too many times to count in his first years of life all while trying to exist in a world that simply overwhelmed his entire being.  

All sounds, touches, smells, so much visual stimulation, internal pain and and discomfort created so much chaos, stress and physical pain, his only way to manage was to shut down.  

Which he did regularly.  It is by far worse than any manifestation of a physical behavior we ever witnessed.  

The eyes are the window to the soul, as they say; and more times than  I can count his eyes were empty.  His body and self could not tolerate anymore.

He gave up.  He surrendered.  He just wanted it all to stop and it wouldn’t.  

How on earth with all this information we understood about our boy and his experiences could any adult actually think this little boy was being purposeful.  That he was being deliberate with his behaviors.  That he was simply “trying to get out of things”.  That he is spoiled, he needs more boundaries, he is disruptive and our responses and attention are encouraging him.

I don’t need to go further because it is all WRONG and this type of ignorance and incompetence in several professional fields especially in education only further traumatized him and our family.  

It was this point in time that in order to save our son, we needed to adapt the world around him so he could exist.  We saw that the calmer, slower, quieter we kept the world around him, he was able to be calmer, more attentive, smile, and function a little bit more.  Usually expressed through engagement with us and through play.  We knew this approach worked.  We knew it helped our boy.  We knew it was an extreme response to maintain an environment that allowed him to breathe and be present.   But when you see him smile, giggle, eat, and sleep a little more, making baby step gains in things he wasn’t able to do before, when you could see life in his eyes, we knew this extreme measure of shutting out the outside world was necessary for him to heal.  And it was helping.  

This is what he needed to heal his soul.  

It is what his body needed to heal from so much hurt and trauma since the day he was born.  It is what his nervous system needed to repair itself.  It is what he needed to be a little boy who could grow, learn, breathe.  

So we did.  We created our paradise in a bubble.  It was our families existence.  Was it hard, yes especially at first.  But when you see results, it is hard to argue it wasn’t an effective way to help him.  He showed us through other behaviors such as being playful, being funny, eating food, wanting to engage, exploring more of our bubble within our little homestead.  Note: I used the term behaviors , but not to describe something negative.  He was expressing himself through these other behaviors that shined a little light like a window into his soul.

It was the safety and connection he NEEDED in order to heal.  His entire life was full of pain, not being understood, trying to communicate his needs and wants but time and time again we ( the adults around him) all failed to respond appropriately to meet his needs.  His constant exposure to environments like hospitals, doctors offices, that are scary and full of assaulting experiences on his fragile nervous system haunts him still everyday.

It was when we realized his “behavior” was his only way to communicate for his self preservation and survival.  In reality this was a blessing because it meant he wanted to keep fighting for his life.

This “will” to survive was an important part to getting through each surgery, each procedure, each terrifying moment that he couldn’t process .  Each of these moments could have been a moment that he didn’t survive.  His will to survive, his fight to get through each of them one at a time threatened his strength to survive and was enough for us to see this is not what the “professionals “ are telling us.  

Knowing his history, his experiences, his existence since birth, how could any adult minimize him to a label of ED, emotionally disturbed?  How could any adult say he is “bad” and we are enabling him?  How could any adult who has an ounce of compassion look at this beautiful boy and say he is dangerous and violent?   

Over the years, we walked away from so many professionals, educators who clearly could not see him with empathy and compassion and a little human who needed so much connection and support to feel safe.  A little boy who struggled with the basic human needs for existence.  He struggled to eat, his bowels didn’t function properly, he didn’t sleep, he didn’t play, he didn’t explore, he didn’t thrive or make development progress; his body literally did not grow for several years.  His experiences left him in a world that he couldn’t trust, where it caused pain, he was helpless and confused and despite our greatest efforts to soothe him, comfort him, remain attached to him, provide for him, and to simply love him with every ounce of our being; his body and mind could only try to survive because his life depended on it.  

Every single minute of every single day is a moment we appreciate how far he has come.  But it is also moments we use to help him heal.  Help him to feel safe.  Help him learn trust.  Help him feel connected.  Help him and see him and all his experiences and be responsive to his needs with compassion, patience and understanding  To play with him.  To connect with him, even if it means scripting along with him and him needing me to follow the exact same script, the exact same way at the exact same time every single day.  Yes, it can be tiring.  Yes it can even be annoying and frustrating.  We are human after all.  However, this was and still is  a simple way to connect  with him, and his way of co regulating with us.  So, yeah I can do this simple act with him, especially knowing how much it helps him.    

Our parental instincts were repeatedly trampled on, ignored, criticized and we were just told so many times we were wrong.  After  the many years of following the professional advice, questioning the professional advice, recognizing their way wasn’t being effective, yet they had no further suggestions or ideas and felt the need to blame us, we stopped listening.   Their suggestions in fact caused further trauma and escalation in his “behaviors “, causing regression, causing unnecessary stress that his body just couldn’t take anymore.  How is this helping him? It clearly wasn’t.  

We knew what he needed, and we knew the extreme measures necessary to help him.   Many disagreed.  Many expressed deep concerns.  Many criticized us and even took our approach to task with calling social services on us.  But we were confident in our decision.  We knew our son best.  We were educated.  We had resources.  I was reading and learning all that I could from the very early years about the potential impact of chronic pain during those early developmental years.  The impact on development of not having bowels that functioned properly, and worse that needed invasive medical intervention everyday!  

Our family was our team.  We had his greatest interest at heart as he was our boy, he was our daughters brother, he was our guiding light and tour guide of what HE needed and what actually helped.  We just needed to “listen”.  He spoke through the only way he knew how, behaviors.  But when we stopped to observe and listen to what he was trying to communicate . It turns out, he had a lot to say!  He was and is a pretty amazing tour guide.  

If this 4th of July, 2020 during a global pandemic is any indication that the world around us is pretty chaotic, very complicated, poorly understood, creating trauma and stress in its wake, and our family continues to laugh together, to smile and share in joyous moments together and are existing with comfort and ease between the walls of our home,  when so much of the world is crumbling around them, I can only reflect back on all of our choices that got us to this point.  

Our very own paradise in a bubble.  This crazy thought process and approach helped meet the needs of our son to allow him to heal, grow, learn and become the incredibly compassionate, smart and happy young man he is today.  His smile continues to light up our world and his giggles melt my soul.  

Whoever said this thing called parenthood was going to be easy?    We were dealt this hand of having a medically complex child with developmental delays.  How could we not do everything in our power to help him?  Our journey didn’t have to be as difficult as it was.  This I know is a fact.  However, at every dark corner of the unknown, I couldn’t help but stop and reflect on our life.  Our crazy sheltered little paradise in a bubble.  What is this trying to tell us?  What are these experiences teaching us?    I couldn’t accept it was without purpose in some way.  I had to find good in every step forward, and every step backwards.  

Our son, our family have come this far, despite the numerous obstacles placed in front of all of us at every turn, but we always knew there had to be a lesson somewhere in all this suffering.  A lesson in humanity, in survival against all odds, a lesson of unconditional love, compassion and empathy.  Our son showed us how to look at the world around us with a completely different lens.  To see how experiences affect us all so differently.  Never being right or wrong, but just different and the great need to respect that in each individual, especially parents to children. 

When we see things through the eyes of a child, a lot of the behaviors we may ordinarily judge, shame, or punish are really cries of fear, uncertainty and confusion.  It is the child’s only way in that moment  to ask for help, safety and love from the parent.  

Our experiences as parents , whether we are dealt a challenge card or a wild card that is flexible and adaptable, shows us the most important part of this parenting game is about showing up for our kids.  It is about rising up to the challenges that are presented, no matter what.  It is about never giving up hope.  Hope is what can drive us when we feel defeated.  Because let’s face it, some days all we have is hope.  Our hope for our son, kept us moving forward and kept our family together.  

This is the post that popped up as a memory from July 4, 2014.  This picture and post is what sparked this article.  It is important to remember the road you have traveled,  all the curves and dead ends you encounter along the way.  Without these experiences, and then looking forward again, it is hard to see any light that might be peeking up the road.  Even if it is just a spark; a spark can set the entire forest on fire.  Our kids are full of wild fire potential.  We have got to stop extinguishing their sparks.  It is time to let them shine.  And this light will be your tour guide.

........”4th of July has never been easy for my boy.  But this picture reminds me how we have always managed to find the "sweet moments" that are buried under all the chaos of life with Autism.    I'm so proud of our boy- he has come  so far and works so hard and yesterday he was able to find his own "happy"!

Changing our lenses sooner only helps our kids sooner

“Changing our lenses sooner, only helps our kids sooner!”

I was writing something recently, introducing myself and why I am so passionate about advocacy for our kids with special needs and supporting parents along their own journeys.

It quickly reminded me why I am fighting to help all our kids.  And why I feel so compelled to educate others about this change in lens from “our kids are bad” “ our kids are dangerous” “our kids can’t be successful”....to our kids can be successful, our kids are struggling and need our help, our kids need to feel safety and connection and need US to co regulate with them.

The brain science is clear, however too few follow and understand it.  People resist change.  ABA is observable, if we offer a reward to these kids, they will comply to demands, they need motivation, and if not they need consequences etc etc etc.....

I’m an open book. I feel it is important to help others understand that they are not alone.  And so sharing personal stories has helped others to see the hard work can help things get better.

To not lose hope!

(Windy Road in September is a photograph by Shawn Einerson which was uploaded on October 15th, 2018.)

Even on those most challenging days, as parents, self reflection is key; am I regulated to be able to help my child?  Or am I joining the chaos?  

For years, I know we joined the chaos way too often.  We didn’t understand ourselves and how our response impacts our son.

Professionals in our circle told us we needed to be firm, hold the line,  to not let him escape, to be consistent, he is manipulating you, make him comply, and if it doesn’t work, it is our fault.

I never want parents to have to experience what we endured to get to this point.

Changing our lenses sooner, only helps our kids sooner.

My families story is a long journey.  Each part contributing to the next step. That’s why I take one moment at a time.  One step at a time.

Success looks different for everyone.  Don’t forget to celebrate each moment and steps along the way.

It is part of your families story.