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.