My growth and updated intro

 This blog page was started over 10  years ago.  It was a way for me to express myself and all the feelings of raising a child with medical issues who is autistic.

The first thing you may notice in this update, I choose to listen to the autistic community and now use identity first language.  That’s one part.

Secondly, compared to when I started this blog, we were in crisis.  Crisis everyday.  Seeking professionals to help us understand our child and the behaviors and struggles that he expressed everyday, often all day long.  We wanted to understand what we were seeing and so we could better understand how to help him.  We looked external because this is what parents are directed to do.  

A big part of this journey has led me to the place of parent empowerment.  We , unknowingly gave away our parental power when seeking to help our child.  We just didn’t know.  But the path forward led us to see we needed to take back our power because we know our child best.  We are his connection.  We are the ones who love him unconditionally.  We are his true advocates who will never give up fighting and supporting him.  This is what led us to this point.  When things got hard, others turned away, shrugged their shoulders not knowing where to try next, and sadly even giving up on our son.  This felt like a rock in the pit of our stomach. It was like an attempt by others to take away any hope we had for his future.

This was not one person, not 2 people, many people, professionals.

 Why?  Because they did not understand the most up to date brain science that helps us understand our kids who struggle with challenging behaviors.  It really is that simple!  They did not understand because they were following the old paradigm “ of behaviorism” and operant conditioning. 

 Now we understand why all the methods suggested to us were ineffective.  And to be quite honest, I am so glad they were ineffective.  Because this meant we had to dig deeper.  We had to explore the true meaning of his behaviors and see that he was struggling and needing our help.  

He was never a bad kid.  Despite being told some awful things about our child, and projections that were downright terrible, he was our kid who had a lot of terrible experiences that were not in his control starting since birth.

It isn’t about what is wrong with him!  It is about what happened to him!   And let me tell you, a lot happened to him starting so young.  Chronic pain since birth, poor development, hospitals, doctors, tests, surgeries, and that is just in the first  three years of his life. So yeah, a lot happened to him.  Thank goodness he is a fighter, otherwise we would have lost him.  He had to fight to stay alive.  He had to fight to get us and others to see him in pain.  He had to keep fighting because no one seemed to be listening.  We knew something was wrong, but we’re dismissed too many times I can’t even count them.   But we didn’t give up.  We would never give up and we never will.  Thank goodness he never did. 

This old paradigm of "there is something wrong with my child" started an awful cascade of inappropriate and even abusive interventions.  Interventions that were well meaning, but we just didn’t know at the time the toll it would take on him.  The trauma that would occur because the protocols and therapies to help  autistic kids was so outdated.  I’m talking about Applied Behavioral Analysis.  This is what all parents are told to start as soon as they get an autism diagnosis for their child.  We believed the professionals who told us that this was the best form of therapy for supporting our child. What they don’t tell you is that it is all based on animal studies, pigeons (yes pigeons) and rats and has deep deep roots to gay conversion therapy and that the researchers believed the autistic person has a mind that is empty and can be manipulated and molded to what the therapists wants to see.  If you think I’m wrong, just go look it up.  The evidence is clear, ABA is dehumanizing and abusive.  This is why I am against its use and we need to stop ABA.  Especially because there are better alternatives and  many other therapies,  resources that are actually proven to be beneficial for kids and people who are neurodiverse, are challenging, or any other struggle.   Many of us have brain wiring differences.   It is what makes this world beautiful.  These alternatives that can help support our kids is all founded in the neuroscience of development and understanding brain state of regulation.  That’s it.  That is the secret everyone needs to hear.  When kids and adults struggle with anything, it is rooted in their ability or inability to regulate ones own nervous system.  It is a dysregulated nervous system that interferes with a child or persons ability to control their emotions so that they can access their thinking brain and make decisions based on a person thinking rationally about it.   

There is research proving how the brain develops and it develops in a sequential manner.  There is no skipping developmental processs.  This development is what lays the foundation for the next step in development.  And then the next and the next.

Dr. Bruce Perry calls this the Neurosequential model of development.  

When we saw none of the “recommended therapies” were effective in helping our son and helping us help our son, we knew something had to change.  What we also saw was not only was it not effective, it was causing further issues for him.  It was harming him.  It was harming our relationship with him.  It was destroying him from the inside.  We could see it in his eyes.  So the help we were told to utilize, was in fact traumatizing our son.  

We had enough knowledge and experience to know this was not going to continue.  We knew he had sensory experiences that caused him great pain and fear as sensory experiences can (I know this first hand).  We knew that his body experienced the world differently and his needs were more extreme and very unique because of his past experiences.  We knew when his world was right, when his needs were all met, his mind was regulated and his body calm.  This is when we saw our boy shine and thrive.   Best part of seeing this, is he was happy and joyful.  We knew it was possible.  We knew his spirit could shine.  It just took so much to get him there.  Sometimes it seemed impossible.  But we did always try our best.  And of course always had our sons best interest in mind 100% of the time.  But as they say, when you know better, you do better.  This is what we had to do.  We had to do better for our child.  Even if it meant going against mainstream thinking.  And this included going against professional advice by several doctors.  They didn’t know better.  They were stuck in this idea that kids are either well behaved, and good or not well behaved therefore bad. It comes down to compliance.  And if we were just more strict, more consistent, more this, more that, then everything would be fine and our son would not behave in the manner he did.  He wouldn’t hit, he wouldn’t run away, he wouldn’t get aggressive or yell or throw objects or not listen to us or other adults.  

I guess when kids are considered well behaved, I believe another way to say it is, they are compliant no matter what.  My son could not be compliant.   If he was a compliant child who didn’t send signals that something was wrong, that he was in great pain, that he needed us to understand so that we could help him, he would have died.  Most parents don’t have these more extreme experiences,  especially early on that drive the narrative of something is wrong with our child and he is communicating the only way he knows how and he desperately needs us to understand why!    

The why is what steers us to meeting the child’s needs.  The why is where their struggles are rooted. The why is what we sought from the time he was 5 days old.  The why is what we knew was driving him to struggle and communicate he needed us to pay attention and see him struggling.  Whether a child has a medical issue as our son, or a diagnosis, or is just simply a more challenging child in the adults mind, we must look to ourselves first to see what is my role in this?  Am I  helping my child feel comfort and secure in our relationship?  Am I meeting my child’s needs so that they can grow, develop and explore their world as children do?  Is my child signaling through “behaviors”,  tantrums, or other observable challenges that I interpret as my child being non compliant, difficult or even misbehaving?  Am I the calm, regulated connected person I need to be so that I can share my calm emotional brain state of regulation with my child because we now understand that only a calm regulated connected caregiver can calm, soothe, regulate a dysregulated child.? Is this what I am doing?    This is the million dollar question that every adult needs to ask themselves before they even approach  a dysregulated, upset child.  Without this understanding, we, the adults, are more likely to escalate a child who is struggling.  I know I am very guilty of this.  I simply didn’t know. Behaviorism is what we thought was the correct path to help our child.  We were told this by pediatricians, psychologists, therapists, psychiatrists, teachers, educators, and many other professionals we had on our team.  Yes, we were trying every avenue to help our son.  We were also fortunate to have resources that many families don’t have available to them.  But what do families do when everything they are being told to do to help their child, isn’t working?

We left them all.  We stopped ABA.  Our son was already not attending school, because he literally was not capable of attending school.  They did not understand how to support him and his experiences while at school and it caused more trauma for him.  It was clear through his behaviors, he did not have the ability, skill or strength to attend school at that time, so for his well being I homeschooled,  unschooled him for 9 years. BTW best decision we could have made.  This created the best opportunity for him to pave his own path of learning, using his interests and developing his internal motivation to keep learning.  This was what we hoped this experience would be. He is an excellent, motivated learner who loves history and turns out is an amazing writer.  He struggled to write for many years.   When he was younger he loved typing wonderful stories on an old alpha smart.  But one day he stopped.  He was about 9 or so.  But now he is a great student.   I don't and would never pressure him to do his work.  He does it on his own, independently and is driven by his own motivations to learn and succeed.  He us now talking about college. More on that later.

After years of stopping all these external therapies, educational experiences, and honestly slowing down the world around our son to a pace that he could function, thrive and be happy in, we saw for the first time some growth and progress.  We followed his lead.  He was our tour guide in the life of Ty.  He was allowed to just exist.  We met him where he was at at any given moment.   We focused on healing our relationship so he felt safe and once again he could be safe with us.  Remember how I mentioned the neurosequential model of brain development?

Well, that is very important to understanding how to move forward when supporting a child that was complex.  He was and never has been a bad kid.  He wasn’t a bad baby, he wasnt a bad toddler.  He was never a child that should ever be viewed through a lens of being good or bad.  No child should be viewed this way.  This is the shift in our minds we all must make so that we can actually SEE our kids for who they are. Our kids who need us to love them unconditionally, to be present with them when it is a good moment and when it is a bad moment.  The bad moments are the ones they need us the most.  Being seen, present and connected (as Dr. Tina Payne Bryson and Dr. Siegel mention in several  of their books). This is what kids need to feel safe and secure.  Feeling safe and secure is what all kids need to develop and grow in each stage of development.  It is feelings of safety in the presence of a connected caregiver that brings our children forward on the path of childhood.  

I wish it was some deep dark kept secret of what kids really need, and even the kids who have more challenging behaviors.   But it really is this simple.  

Now, don’t get me wrong.  We still have many challenges.  Our son still struggles in many areas.  He has developmental trauma from all his chronic early pain, hospitalizations and experiences that he probably doesn’t even remember. We work every day to repair and to gain his trust.  Trust is very hard for him after so many negative even painful experiences.   His nervous system never knows who to trust and what someone might do to him.  This leaves him in a high state of arousal and alert.  Always on guard to protect himself.    His body just doesn’t forget.  As Dr. Bessel Van Der Kolk says in his book “The Body Keeps the Score”, this is in fact what happens.  The trauma lives in the body.  It can be triggered and the person won’t even know what happened.  Except that the trigger causes their brain state to immediately react and the fight, flight or freeze response hijacks the limbic system of the brain and there is no more thinking.  In my sons case, he tends to flee, escape -RUN. This is good.   Movement is regulating, escaping in the moment to get away from a perceived threat is good.  He always escaped.  Unfortunately, in ABA, behaviorists tell parents, like we were,to not let them escape.  That the child must tolerate and comply with whatever is being asked of them despite their bodies wanting to escape.  Behaviorists will stop a child from escaping, they will block an escaping child.  They see escaping and “getting out of" whatever it was they were asked to do and are now attempting to  flee from it.  This is survival!  This is all done without any understanding of WHY the child’s nervous system is commanding the body to run. Behaviorists just see it as a behavior that needs to be fixed. Needs to be stopped.  Needs to be replaced with a "more acceptable " behavior.   More acceptable to who?  It is without  any regards to what the child needs or the why that always lies beneath the observable behavior.  It is all about control, 'do as I say' and forcing compliance no matter what.  This is exactly why ABA is abusive and needs to be seen as an outdated therapy that is no longer relevant in 2021 and to put this profession out of business so that it cannot harm another child or any person again. This even goes for all the nice, well meaning behaviorists whose intentions are in the right place;  but can’t see past what the therapy actually does to a person.  

This model has followed students into schools and has become so pervasive in our society because we see people who experience the world differently, who may act different than what society has set as the “norm” or that have needs that are considered different,  as people who need fixing.  We must think outside this predescribed box of what society says is normal and correct and realize there is a whole lot of other fabulous boxes , each one for each unique individual as we are all unique and should never be forced into someone else’s box.

My son has given us the greatest gift.  He gave us the gift to see the world through a new pair of lenses.  This has allowed us to see him for the amazing kid he is, to understand him and do our best to meet his needs.  To always see him not for his struggles, but to see him and to know he is always trying his best.  “If we see our kids differently, we will see a different kid”- Dr.Stuart Shanker.   

Our journey has been quite an adventure.  We could never have predicted where our son would be today.  No one else could either.  The difference is, we never gave up.  We knew if we could just understand how to meet our sons needs, that it would catapult him to his future.  Which is exactly what all kids need.  Diagnosis or not.  All kids deserve and need parents, caregivers, etc that see them and meet their individual needs and never give up on them.  They need to feel they are loved unconditionally.  That they make a room shine when they come in.  That we see them with soft eyes, a warm heart and connection that can never be broken.

This blog follows the path of how we got to where we are.  But the only thing that actually mattered, was that we followed our child’s lead as to the best way to meet his needs.  With our own flexible, predictable and constant sources of love and healing, we were able to grow as parents to see what our child needed the most.  Us!  This has helped our family heal and has brought a new found understanding of what it means to be happy and live.  We still find the most joy in our “Paradise in a bubble” because this is where all of our nervous systems are connected and calmest together.  It is just what this family needed. It is the solid foundation we all needed and can always rely on, in both good times and in bad!

I

One doesn’t “just get over” some things....

 “One doesn’t “just get over” some things”

This is a great article on the issues with schools and school staff NOT being trauma informed, trauma sensitive and trauma responsive.

Trauma stays in the body.  No one knows who has a trauma history.  Unfortunately what we have learned from the ACES study, which is 

“is one of the largest investigations of childhood abuse and neglect and household challenges and later-life health and well-being.

The original ACE Study was conducted at Kaiser Permanente from 1995 to 1997 with two waves of data collection. Over 17,000 Health Maintenance Organization members from Southern California receiving physical exams completed confidential surveys regarding their childhood experiences and current health status and behaviors.” Source CDC.gov

“The findings are important medically, socially, and economically: They provide remarkable insight into how we become what we are as individuals and as a nation. The ACE Study reveals a powerful relation between our emotional experiences as children and our adult emotional health, physical health, and major causes of mortality in the United States. Moreover, the time factors in the study make it clear that time does not heal some of the adverse experiences we found so common in the childhoods of a large population of middle-aged, middle-class Americans. One doesn’t “just get over” some things.”-Journal ListPerm Jv.6(1); Winter 2002PMC6220625

 Dr. Ablon is Associate Professor at Harvard Medical School, Founder and Director of Think:Kids at Massachusetts General Hospital, and an author.

School Discipline is Trauma-Insensitive and Trauma-Uninformed-  by Dr. Ablon

Why change is needed to meet the needs of students exposed to trauma

“.....schools often still rely heavily on punitive school disciplinary strategies

Students who exhibit challenging behavior are often the students with trauma histories because being exposed to chronic stress or trauma delays brain development, causing lags in skill development which in turn result in challenging behaviors. No wonder traditional school discipline doesn’t work with traumatized students: motivational strategies don’t teach students the neurocognitive skills they lack.

.....traditional school discipline revolves around rewarding students when they do what we want and revoking privileges when they don’t: a toxic dynamic that many traumatized kids are already all too familiar with in their past relationships with adults. In other words, traditional school disciplinary strategies are about as trauma-uninformed and trauma-insensitive as it gets!”-      Dr. Stuart Ablon.   

How we discipline kids matters.  Are we trying to “teach” kids or do we just want to see them feel bad and experience something negative?   This makes no sense if we don’t start treating kids, all kids because we do not know who has trauma history and we cannot risk causing further trauma to kids who need support and our connection above everything.  Yes, even our more challenging kids.  Remember, kids do well if they can.  What lies underneath the behavior we see is what we must figure out.  The child is communicating in the only way they know how in that moment.  That’s it.  If we shift our mindset to seeing kids who have challenging behaviors as kids who need our support, need to feel safe, need our connection, and do not have the skill set to communicate in a more appropriate way in that moment, we SEE a different kid and we share our compassion and co regulation which they FEEL!   

The ACES study has shown us how common adverse experiences are in kids.  Trauma lives in the body.  When a child has traumatic experiences even if they don’t have memory of it, their bodies hang onto it.  

We can help all kids if we just see them as needing our help.  That’s it!  Punitive punishments do not help kids.  Punitive measures, isolation, seclusion, and many other common forms of punishments are meant to be negative and harsh and kids do not learn anything from them.  We know better.  It is time to do better for our kids.  

https://thinkkids.org/School-Discipline-Is-Trauma-Insensitive-and-Trauma-Uninformed

Rebel Chat part 1 with Autism Level up and Dr. Mona Delahooke on behaviorism

 This is 22 min of a very powerful conversation.  I highly encourage all parents watch it.  One of the experts, Jacquelyn Fede, PhD is autistic.  

Her knowledge and experiences are just so eye opening as a parent.  She does a demonstration that I have never seen done before and quite honestly made me horrified after watching it.  Because this is what it is like for many of our kids.    The conversation grew from an article by the Behaviorists association President talking about how they know ABA is wrong and even apologizes...but goes on to talk about the “new ABA “...

I believe I posted the article awhile back for anyone interested.  

https://m.youtube.com/watch?v=2TDEMY40szQ&feature=youtu.be

One take away for me is basically, yes we all understand the importance of “skill building” for some of our kids in many different capacities.  But we cannot have  “skill building” come at the expense of a persons autonomy and existence.  And it doesn’ have to be.  There are numerous ways to build regulatory capacities and give individuals the tools they need to be successful.  It just has been proven to not be through behaviorism.  

https://youtu.be/2TDEMY40sz

Attachment, unconditional love, connection & safety

 I had to “introduce “ myself to an online group that we are all diving deep into discussion about Dr. Mona Delahooke’s book “Beyond Behaviors “.  I think I’ve mentioned her and her book a few times 😁😉. I love her work and it is something I can point to when we encounter others who are not listening to us.    The old paradigm vs th new paradigm. 

This is what I wrote.  It is personal.  It was hard to write.  It brought back so many difficult memories.  We just wanted to help our son.  Nobody would listen. The crucial years were rolling by, this made us feel so desperate and stressed.  My favorite is when “others” literally would tell us, your stressed out parents, you need to relax!   Or my favorite, at age 5 from a world renowned “Autism” center, the quick judgement and I have a hand written note that says “mom should get a babysitter”.  Seriously, that is what we were told (btw so often everything does fall on the mom.  Even though my husband was at every single doctors appt, assessment appt, etc). But that is a discussion for another day.   

So, here is what I wrote.   It is good for us to remember how far we have come.  How much progress he has made.  Because on many days, when we felt so defeated and exhausted, we always managed to get through.  Should it have been so hard for so long.....absolutely not.  Did he need to suffer for so long, nope.  There was a lot of malpractice IMO.  But our energy and focus has always been on our son and our family.  We had to tune out that external noise.  We had to turn inward, and realize no one was coming to the rescue.  We were on this island alone.  We were going to figure things out on our own.  So we did.  It is as simple as that.  Parents are so often dismissed.  I believe in parent empowerment because that is what saved our sons life.

I am the parent of a child with ASD, ADHD, OCD, SPD and major medical complications. He was the child that all our professionals scratches their head not understanding “his severe behavioral over reactions” to everything! We were concerned, but we were more concerned with the why. We knew he experienced significant pain since birth. His bowels were so damaged and inflamed by the time a doctor listened to us, looked inside, and yes his entire GI tract was full of ulcerations, red and very inflamed, and were so enlarged they would have perforated had we not kept pushing to get him help. So a child, who experienced all of this since birth, couldn’t sleep, eat, existed with chronic pain in those early years......well this led to what we thought was an angry little boy. But we also understood why. However his behaviors grew as he grew because all the old traditional methods to “stop behaviors” were never effective. We were blamed, told we spoiled him (even when he was in the hospital for 12 days as a 4 yo.....terrible). We listened to others. They never seemed to listen to us. To them behaviors were behaviors and it didn’t matter why. Rewards, time out, ignoring, isolation and even eventually restraints (we were told) were necessary to keep him and our family safe. 

I wish I had books like Beyond Behaviors so long ago. Luckily we never ever gave up, we dropped behavior therapy, we focused on our child, we even had to take him out of school (they made things worse for him) and homeschooled/unschooled him for 9 years. I used DIR floortime philosophy because I knew we needed to meet him where he was at. He experienced so much medical trauma, trauma from behavioral therapy, trauma from us even trying to help him. Trust is hard for him. I understand why. For years, I followed his lead. He was the guide. I learned so much. His nervous system over time calmed down. He was more engaging. We dropped expectations for a long while. He was not able to meet them. He might have been 10 or 11, but developmentally he was more like an infant. Needing his basic needs met. Connecting and feeling safe with us. And slowing down the world around him so that he could just breathe. So we did. And for the first time, we saw progress. We saw him. We saw more laughter, and joy. Baby steps and patience led him (and our family) to a calmer, happier home life. We understood the why beneath the behaviors. He was not able to communicate in any other way. He still struggles with being to verbalize his needs, wants, and feelings. His words most of the time are just that, words. Scripts he says over and over. Memorized conversations. Things he repeats from TV. We know this. We understand his iceberg. We know how to support him. He is an amazing kid who has endured so much in his life. His behaviors at age 5 were so worrisome that several professionals told us we needed to place him in residential care. We never gave up. He is our son. It was following our intuition and him that led us to where we are today. Not behaviorism and professionals who simply gave up so often because they didn’t understand. This paradigm shift for us was life altering and why we share our story. Because I’m pretty sure my son was an extreme child. Very complicating factors contributing to his behaviors we saw. But we knew those were his only communication. It literally saved his life when he was little. Had he not been able to “communicate “ his severe pain, we would. It have known to continue finding the right help for him when he was not even 3. Since age 4 he has a cecostomy button which is an external port to irrigate his bowels every night. He is now 16. He has experienced medical trauma. He was hospitalized 7 times when he was only 3. This was all apart of his development during those first years. Our son survived all this. And now, he is thriving. He talks about going to college. He is an amazing kid who still struggles. Not as much and we know how to support him. It isn’t always easy. In fact, some days are still really hard during this pandemic. But he is safe. He is a beautiful human that had to overcome so much to get to where he is. Books like Beyond Behaviors was my ahh ha moment. Because it gave me the better understanding of why we did what we did for him so many years ago, was effective. I now support other parents who have children who struggle. I hope our story, my sons story inspires other parents to never give up. Parent empowerment is so important because we do know our kids best. And if we hadn’t listened to ourselves, knowing something was wrong, the 3rd doctor told us his bowels would have most likely perforated and he would have died. He is a fighter, because he had to be. All kids have reasons and there is always a “why” beneath their behavior. Parents need to be the detectives. Importantly parents need to love their kids and meet them where they are at with safe relational presence and connection. It matters.

Never Give Up!

 This is beautiful.  Dr. Gabor Mate’s  words are so true to what children need from us, their parents/caregiver.  And showing them through unconditional love, our presence and our connection, we are safe and will provide them the safety they need to thrive and develop!  Link to video called “How not to screw up your kids” is posted below

This was my greatest fear for my son.  We knew the first 3 years of life were vital to a child’s well being and development.  And despite every effort, every hug, every connection, every bit of our unconditional presence..

He didn’t feel safe.  He wasn’t safe.  He was experiencing chronic pain.  We knew this since he was 5 days old.  It was clear to us.  We knew this and despite our pleas to our doctor, they ignored us.  They ignored him.  

When a child screams (not just cries, but screams as if they are being stung by 100 bumble bees), when they vomit regularly, they scream this way when trying to poop (which was so rare anyway), when they woke up screaming from a very short sleep period, and this was everyday, all day long; a parent knows that something is not right.  

As he got older, he couldn’t eat solid foods.  He wasn’t gaining weight.  He was thriving.  He was missing milestones.  He was struggling.  And we knew it.

Those first 3 years were hell.  This scared us because we knew how important those first 3 years are to their development.  We responded to his needs.  We followed attachment parenting.  He nursed till he weaned himself.  We co slept (but th constant night waking and terror screaming didn’t allow for much sleep). So husband slept in the other room to actually get sleep since he had to go to work.   No sleep for all of us would be worse.

We knew this.  We knew these early years were vital.  And yet, despite the evidence, we were ignored.  We were blamed.  It wasn’t until the 3rd doctor, who was the second specialist listened.  At this point our sons bowels were so damaged, open oozing ulcerations throughout, damage to several important components of his bowels (called villi that are finger like projections and help with absorption of nutrients).  

So watching this made me emotional.  Emotional for what we did know and nobody listened.  And at 16, we know the impact of this on our son.  

We work every single day to meet his needs. To support him the best we can.  We will spend our next decades remedying this.  It was traumatic.  It was traumatizing experiences for all of us.  We will all continue to heal the rest of our lives.  Healing our relationships.  Healing our minds. Healing our bodies because trauma lives in our bodies.  

I can’t help but wonder, what would life have been like if we were listened to.  If our son received the crucial medical care he needed even a year before he did.  By the way, we were told, his body would not have been able to tolerate much more by the time they looked inside.  His bowels were on the verge of perforation.  They expanded as much as they could before literally exploding.  This is called bowel perforation.  This can cause death.  This is where we were.  Our perspective from that moment forward changed.  We saw our continued fight to help him necessary for his survival.  His body also was in the fight for survival.  It just took over 2 1/2 years to listen.  

This is exactly why I believe in parent empowerment.  Because if we did not get to this point of advocating for our son, he would have died.  If we listened to those first few doctors, who ignored our concerns, told us we were being over reactive, he would have died.  We knew our son.  We knew something was wrong.  We needed somebody to listen.  

Never give  up

https://youtu.be/Rjk3mXLa1dw

Meet them where they are at!

 Meeting them where  they are at.  

Our kids are continually growing, changing, developing.....we all miss phases we once probably couldn’t wait for it to be over.  

Days are long, years are short. 

Having 3 teenagers in the house (one home from. College due to pandemic), it is about moments of connection.  We watch a show all together every evening.  We have binge watched several shows since pandemic. And at 9pm everyone comes out and says, ready to watch a show?  It is quite lovely as the parent.    

Teenagers hanging out with mom and dad and dogs, I’ll take that.  Just like everything else, it won’t last forever, so enjoying these types of moments is pretty awesome.

DIR floortime and development

 Excellent interview with Dr. Serena Weider, founder of DIR-floortime therapy.

Her book was recommended to us when our son was 4-5.  It became the foundation we used to measure all other “therapies”.  It felt right because it was all about engaging with him on his level and was based on relationships and secure attachment.  (We found Dr. Sears attachment parenting books a very useful resource as we were starting our family....so this set the foundation years before). So DIR floortime was like an extension of this idea of prioritizing the relationship, following our child’s lead to meet their needs and connecting on our child’s level. 

This interview with Dr. Weider is amazing. I was reminded of what to do when ABA was a complete failure and left my son (and me) traumatized.  I remembered to see my son where he is developmentally.  We needed to meet him where he was at.  He was 11, but that was not where he was developmentally.  The next few years, I sat on the floor with him, watched him play his legos, creating worlds and expressing ideas and thoughts through his play.  I treasured the moments he invited me to participate. I followed his lead.  I responded to his needs.  I placed no demands or expectations on him.  He didn’t yet have the skills to move to the next level.  I had to respect this.  We shared playtime.  We engaged in play together.  I learned so much about him.  How he sees his world.  His experiences were expressed in a healing way through his play.  

The next few years were all about meeting his needs.  Following his lead.  Engaging together.  Experiencing shared moments of joy.  Healing through connecting.      

So when I watched this video, I wanted to share.  There are ways to help support our children who struggle.  We just need to be prepared to allow our children to guide us.  This is what they need from us.  

Development is a lifelong process

Play is children’s language

Play is the vehicle for learning

Development has its own trajectory

Relationships are the most critical form of supporting development 

https://youtu.be/PEcM-8_wpOY

https://youtu.be/PEcM-8_wp

Understanding the WHY!

 Institute of Child Psychology -

All behavior is communication. Slow down and ask yourself what your child’s behavior is telling you. When we work with the underlying need, we create long-term solutions instead of quick, temporary fixes.

This is it, right here!  Why!!  This is the only question we need to seek information about.  When behaviorism says “who cares about the why, we need to stop the child from doing x, y or a; or when teachers say “I don’t care about why, just make it stop it is disrupting the class” we only create more issues for the child because the why is what drives what we see.

If we look at it through a compassion based lens, of what does this child need, rather than through a compliance or manipulation lens, this is when we see the child.  Not the child who isn’t following directions or is “acting out” but the child who has no other way to communicate distress he is experiencing.  It is a stress response that drives the child.  When we see that they are having a hard time, not giving us a hard time, we see them as needing us.   Needing our comfort, our safety our connection.  Yes it can be inconvenient.  Yea it can be disruptive.  Yes it can be exhausting.  Yes it can be so hard.   Imagine how hard and exhausting no scary it is for the child?   Our children do well if they can.  If they can’t, we need to figure out the why not!   

My son at age 16 still cannot tell me the why beneath his “behaviors”.  By the time we see the behaviors, he is already dysregulated and in his downstairs brain experiencing great distress.  The only thing I can do in this moment is be present.  Be calm be still be with him.  Nothing I could say would ever help in this moment.  But what we try to do, is meet his needs, support him and continually co regulate and importantly notice the signs of distress before they go all the way.  Sometimes, it is a simple request I have, and if he screams immediately back at me, ok that was 0-60 and means drop the demand and co regulate.  Our kids especially right now are experiencing overall so much stress.  The starting point is so much higher than it was pre pandemic and pre distance learning.  Which is exactly why we need to be really patient with our kids.  Our expectations cannot be what they were.  I know for myself, I have had to drop my own expectations for myself.  If the laundry doesn’t get folded, who cares.  The clothes are at least clean.  

Our kids need this same kind of empathy and compassion from us.  We need this kind of empathy and compassion for ourselves.  

We are our kids rock.  They need us now more than ever.  Even our older kids.  The best thing we can do, is understand the why when we see a behavior and be present and connect with our kids.  It really is that simple.  

I love the saying “when our kids are at their worst is when they need us the most”- Dr. Tina Payne Bryson.

This is so true which is why self care is so crucial.  Because I know first hand, if we are too dysregulated, and our child becomes dysregulated, it is a whole hot mess of elevated toxic stress and emotions.   Which is not good or helpful for anyone.  But remember, our kids are still developing.  They need us, the adults to be the solid reliable calm present safe space.  If we can’t provide them this, the world becomes even more frightening for them.  

So do what you need to to take care of you.  Go for a walk, take 5 deep breaths and exhale slowly, drink a glass of water, listen to music, splash water on your face.   Do whatever you need to in order to be the regulated, calm  and loving caregiver i kids need us to be so that they can be their best selves.

Aggression.....what is it really?

 This is a great blog post (below) from Profectum Foundation.

 I would add what Dr. Ross Greene says, “kids do well if they can.  If they can’t, why not.”   We must identify and understand the WHY that lies beneath our kids behaviors.  What we see is the observable behavior, but under that tip of the iceberg are the numerous reasons that led up to what we actually see.  And the most important thing is only a calm regulated caregiver can calm a dysregulated child.  

In the moment, nothing but sharing calm matters (wish I knew this years ago).  We were told to ignore him, to restrain him, to punish.  This is exactly what NOT to do.  Our kids need us.  They need our connection and our sense of felt safety.  Their nervous systems have taken over and the only thing is to co regulate through loving connections and compassion.

Demystifying Aggression

January 13, 2020 Beth Arena Behavioral Challenges, Behavioral Health Specialists, Emotional Regulation and Development, 

Let’s Change the Dialogue Around Children and Revisit Development

Profectum Foundation

 

“Aggressive behavior at any age is challenging and distressing for parents, teachers, clinicians, and others, as well as for children themselves.

Sometimes we see it coming, sometimes not. Sometimes it is physical, and sometimes it is a threat or disparaging remarks. But we all know it is dangerous and damaging. Of course, our first step is to stop aggressive behavior and secure safety. But what we do next will depend on how we understand its meaning?

All behavior has meaning, and aggressive behavior is complex.

Thinking about it requires a multifaceted approach. All children experience anger, fear, anxiety and frustration, and vary in their capacities to regulate these big emotions, impulses and negative feelings. But not all children resort to aggressive behavior. Start by examining the development of self-regulation. Each child is born with individual differences in sensory motor processing, and have different physiological patterns of under, over or mixed reactivity to sensation, emotions, and stress in the environment.  The availability of caring relationships to support both emotional and physiological regulation in the face of environmental stress or trauma is essential.

Many external and internal emotional and physiological processes contribute to a child’s dysregulation.

Some are more evident than others and can be ascertained by examining the world the child lives in. Others require us we take a deeper look at the underlying causes or hidden triggers. High levels of arousal and perceptions of threat related to changes or transitions may be triggers. Here the meaning of threat to the child must be understood if we are to lower the anxiety and fear that propel the child into the behavior. The behavior may just be the tip of the iceberg.

Given the complexity, it is important to find one lens or perspective that is universal to anchor our understanding of aggressive behavior and ability to help.

And that is development. Not the silos of cognition, language, motor, social, etc., but the integration of all these aspects as they function simultaneously and are synthesized in the DIR ® Model (Developmental, Individual Difference, Relationship Model) created by Stanley Greenspan, MD and Serena Wieder, PhD.  Evaluating the child’s functional emotional developmental capacities, the “D” of the DIR® Model, allows us to identify the gaps that get in the way of regulation and shared attention. From the start of life regulation is embedded in the infant’s relations with parents as they connect around the need for regulation of feeding, sleeping, crying, temperature and self-soothing.  As the child develops, regulation of self-control, impulses, anxiety and the expanding range of emotions continue to be embedded in relational and physiological, as well as environmental and trauma factors.

To develop therapeutic strategies, look for the gaps in all functional emotional developmental capacities.

 Has he not learned to relate or engage warmly to other people or others have not related to him to build trust and security?  Perhaps he has not developed the continuous flow of interaction with others that support communication of feelings and problem solving. Or, he has not entered the world of symbolic function for the safe expression of big emotions and has not developed adequate understanding of what is real or not. If he has not learned to regulate or control aggressive impulses, he may lack the capacity to see his behavior has consequences for others and has not learned to empathize with someone else’s perspective. Targeting these gaps can guide therapeutic interventions to support the foundation necessary for mental health and behavioral regulation.”      

F

Covid 19, what has it revealed about education? Time to rethink education

 What Covid 19 revealed about schools and 4 ways to re think education 

“The pandemic created many challenges for students, teachers and parents — and it's also showed us what they truly need from their schools:.....”

“Chances are the kids mostly miss the playground more than the classroom.....that social emotional piece that forms the core of human learning.

We will need social workers, nurses and counselors in every school ......to help kids feel safe....and find their way back to school.  

We will need art class, physical education.....music more than ever

We need to rethink assessments

We need to stop making school about scoring better than the kid next to you....” 

https://www.ted.com/talks/nora_flanagan_what_covid_19_revealed_about_us_schools_and_4_ways_to_rethink_education?utm_content=2021-1-27&utm_source=facebook.com&utm_campaign=social&utm_medium=social

The Model of Engagement

 I love this post today from OT Greg Santucci.  So much of what I have learned is how OT and consideration for our kids nervous system and how they process the world around them is the KEY to supporting them.  

When the world is overwhelming, they lose the ability to maintain a sense of calm, or of themselves ( which is why you may see a child who normally doesn’t lash out when frustrated, but then starts to lose it over something). Their nervous system is beyond capacity and it is true, when a parent says, that’s not like them.  Bingo....it is not because they are not in any control over their body and being.  

It is pure survival.  

Imagine how you would respond if you were being chased down a dark ally by a bear!!   I’m pretty certain I would not be in any mindset to make a decision let alone follow a direction or a demand.   You lose your ability to hear or to think in any rational way when in fight or flight.   

So I am a huge fan of maintaining regulation through appropriately supporting ones nervous system, throughout the day, so that everything we do, is a support for his nervous system, to help it maintain a balance and when it gets out of balance, utilizing what I’ve learned through years of his OT to help bring calm regulation back.  Nothing functions well without being in a calm regulated brain state.  

Some of our kids have a very difficult time either staying regulated or being able to self regulate when becoming escalated.  And it is important to rememebr, self regulation is a developmental process.  So for kids who have developmental delay, yeah they will not necessarily be able to self regulate their emotions, self calm, self soothe.  But I recognize the frustration parents have that their 10 yo or 15 yo still struggles to be able to self regulate their body and emotions and the consequences of this.  The explosive behaviors are real.    Again, remember it is developmental, so by supporting them during these difficult moments, you are modeling and sharing your calm that over time will help them learn to on their own.  

This is where the safe trusted caregiver can improve the situation and share their own calmness.   (Which is natural for some or some of us have had to learn it ourselves).    

Here was my response to the post that is shared below.

Love this.   It is 100% .  Trust, safety and co regulation have to be the focus for everything .  It is like magic when a therapist a family works with, “gets this” and you see your child form this relationship.  It is ll about relationships!!!!  I wish teachers, educators, therapists, parents understood how important this is to supporting kids.   And seeing when a relationship has a fracture, that the only thing that should happen next, is repeating that fracture.   The child will not feel safe or connected without this occurring.  And exactly like you said, slide back until it does.   

Keep education others.....people are starting to pay attention.   The old, antiquated methods have not worked and many relationships need repair because of them (I know this personally with my son).   

It is ok to step back, and focus on this repair.  Progress cannot happen without it!!!   Love the graphic.   Thank you for all your continued advocacy!

Original post…

Trust and Safety.

I checked in with a family about how the week went.

The child comes running up to me and says "I STAYED DRY IN MY BED ONE NIGHT!" They were so proud.

I said: That's amazing! 

Our "OT goals" were for attention, sensory processing and behavior.

I love that they shared their news with me.

Typically and embarrrassing topic, this child didn't hesitate to share their success!

This child will meet every OT goal and probably a few extra, because they trust me and I'm meeting their safety needs. Because of that, we can work on their sensory processing and regulation skills so they can participate at their highest level of ability.

At any given moment during our time together, I may need to "slide" back down to either help them get regulated, or earn their trust again....and that's OK. In fact, it's necessary.

Trust and Safety

Regulation

Participation

I will shout it from the highest mountain. If you don't have their trust or their safety needs aren't met, then you can't move forward with your goals and expectations.

If you're yelling- the child doesn't feel safe.

If you are constantly changing the rules- they don't trust you.

If you say things like "you're fine" or "its no big deal"- they don't feel safe.

If you lose your patience and take things away as a "consequence"- they don't trust you.

Trust and Safety

Regulation 

Participation

#TheModelofChildEngagement

"Safety is treatment and treatment is safety" -Stephen Porges

#occupationaltherapy

Throw away behavior charts

Throw away behavior charts.    They do not support kids and can actually cause further issues for many due to anxiety of not being able to meet the expectation.  

Kids meet the expectation when they CAN.  Kids do well if they CAN.  If they can’t, it is up to us to find out WHY and support the child.  It isn’t about motivation.  It is about lagging skills and the child’s physiological brain state at that moment.

This is a perfect example of how behavior charts will do nothing to solve the child’s problem ; which it is the unsolved problem that is the underlying cause of why the child isn’t meeting an expectation.  If we change our lenses to see the child as struggling and needing support, rather than being difficult and purposely not following directions (or any other demand), it changes our tone to a more compassionate and supportive, how I can help this child?  Rather than , what’s wrong with this child?  It matters.

From Greg Santucci, Occupational Therapist:

Charlie was in red.

I asked another student...why is Charlie in red?

The response: "He wasn't sitting right".

I'll bump up my previous post on "sitting right".

Red? For not sitting right? He went above yellow for that? Even the chart loyalists should admit that "red" is harsh! Geez!

So now what? A call home so he can get grounded later that night for "not sitting right" during the day? 

Did the teacher take away recess? Because recess would give Charlie the input he needs so he can....wait for it......"sit right". No behavior chart needed.

Charlie was having a hard time sitting in his chair.

Charlie may not need to sit like the teacher expects their students to sit in order to pay attention.

Charlie may need a movement break.

Charlie may benefit from some flexible seating options.

Charlie may have difficulty sitting up (poor trunk control, seat too high so his feet can't support him, etc). I'm quite certain Charlie is not willfully sitting "wrong" to get attention or aggravate his teacher.

 Kids "sit right" if they can. 😉

Charlie had to stare at his name in red. All his friends knew that Charlie got in trouble. Charlie was "bad" today. Charlie may feel embarrassed for getting in trouble, but feeling embarassed doesn't help him sit up. Or, Charlie may feel defeated, or not even care anymore about the punishment, because he's unable to meet the teacher's unrealistic expectation.

This chart is SO CLOSE to the garbage can...which is where is belongs.

Charlie needs support. This chart solves no problems.

Tear Down Your Behavior Chart!

 http://www.ascd.org/publications/educational-leadership/sept18/vol76/num01/Tear-Down-Your-Behavior-Chart!.aspx

#occupationaltherapy

#sensoryprocessing

#sensoryprocessingdisorder

#betterwaysthanaba

#justsaynotoaba

#knowbetterdobetterbebetter

#teacher

#teacherlife

#teacherproblems

“Our response can change the dynamic of distress”

 This is a great tweet thread.    

It makes an excellent point about our adult responsibilities to not escalate a child.  Our response absolutely can make things so much worse or can help support and co regulate the child.  Reframe and problem solving can only occur once everyone is calm, regulated and back to feeling safe.  Not one professional ever said this to us.  They said to hold child accountable in the moment.  There was no understanding about brain state stress response, regulation and co regulation and nothing matters until the child and adult are both calm, regulated and feeling safe.  Behaviors are communication.  Figuring out the WHY that lies beneath the behaviors is how we support our kids who struggle.  Not through punishment, consequences, seclusion or restraint.  If our kids can , they do.  If they can’t, figure out why!   Lack of skill to do better is always part of the “ why “ when we see our kids struggling, misbehaving, having a meltdown.  A dysregulated child cannot problem solve or learn the skill that would help them meet the demand that is being placed on them.  Adults must understand their role in helping co regulate the child through their own calmness, feelings of safety and connection.  

When we escalate the child, that is when things can really progress to even dangerous states, which can look like the autistic meltdown.  Literally it is the inability for the child to cope with the overwhelming stress response their brain and body is experiencing and their survival brain takes over and everything becomes about surviving.  This is why we say, there is no rationalizing with them, no talking with them, no problem solving or any other “solution” an adult thinks they have or presents to the child.  Only a calm, connected, present adult/caregiver that can help bring feelings of safety to the child and share their own calm can support a child to move out of the brain survival mode.  Dropping all demands and expectations that may have elevated the child to this point must be priority.  Adults have a hard time with this.  But when we understand that behavior is communication, then we see a child as needing our support and compassion.  

Kids do well if they can.  If they can’t, why not and why now!!!  

Tweet from Anne Martin

“Why escalate a student by reactivating their stress response systems when, as teachers, we have this powerful opportunity to co-regulate a child’s growing agitation and anxiety?” @desautels_phd , Connections Over Compliance

“Our response can change the dynamic of distress. It’s an opportunity - and I believe it’s an obligation. The first task is to help the child re-regulate. We will get to solving the problem once the S is physically, emotionally and cognitively settled.

At that point we can focus on the issue, reframe, validate, and problem-solve, all within the encompassing circle of relationships. - Anne Martin