Power struggles and making cookies at 9pm

 Ugh. Power struggles. I have no intention of engaging in power struggles. But my boy has other ideas.  It started with my request for him to take his meds (which are an every other night regimen).  Also, he has been more resistant the last few months when it is a night to take them.  Then it grows to more time passing  that he hasn’t taken them, the more agitation we see with him.  These meds are actually just supplements he takes.  Vitamin B12, Folate, L Carntine, GABA, Vit C, and melatonin.   We have found this regimen with micro dose cannabis THC to be optimal in supporting his body, his mood, expand his window of tolerance and flexibility and helps reduce his anxiety and has shown to help him be present and more communicative.  It is what has helped get his development and progress to where we see him now.  Which is huge leaps from a few years ago.

But when his level of control starts to rise and even exceed “his normal “ we can tell he is struggling.  And since this has been an issue for a few months now, I try to be patient and not demand control when that will only escalate anything with him, and not in a good way.  He isn’t able to meet these demands right now.  Which tells me it is isn’t about the cookies , as he is expressing.....it is deeper than cookies.  My boy wants the negative engagement.  I don’t.  So I won’t.  It tells me his anxiety is higher than he is able to handle at this moment.  So I step back.  What started it you may be wondering?  Med control is just the symptom I see. The cookies are just  a symptom .  What lies beneath these issues?  His anxiety and feelings of lack of control over his being.  His world, his body, his environment.   The more I push and demand from him, the more resistance I will be met with.  So I need to let go of any requests I make.  I will always be met with resistance, until we address the underlying increased anxiety, which leads him to needing more control over pretty much everything.  

It is hard.  It is inconvenient. I know the meds will help his anxiety.  But I can’t force it, otherwise he will jump back 5 more steps.  Been there, done that, paid high price for not respecting his struggles.  So, I step back.  I am quiet.  I do not engage.  He storms off out of frustration.   But this is good.  

So, this is where things went after his refusal to take meds.  Cookies!!  

He is on a sugar cookie kick with frosting ever since the girls and I have been baking them for Christmas.  As long as he asks nicely, I’m happy to make more.  Food is not where I ever engage in power struggles with him.  Food is a huge trigger.  Food is a huge thing he needs control over.  Food has historically hurt him due to his bowel issues and I learned very early on we can make his food issues worse by engaging in power struggles with him.  Or we can just let him be the leader in his eating.  Period.  This approach is the best, especially because his sensory experiences are only something he knows.  He will eat it, if he wants to.  If he won’t eat it, pressuring him never works and makes control issues he already has to maintain control over his world to help ease his high anxiety worse.  Our world is about picking our battles.  For the most part, no battles are really worth the fall out that may follow.  It is truly comfort and connection over control.  Compassion over compliance. 

Today is a day I am reminded that when he can, he does.  When he can’t, I have to figure out why?  And I may not fully know why, other than higher anxiety today.  We are in a pandemic, just had Christmas celebration (which under the best circumstances is challenging).  So I will be present.  I will not engage negative energy.  I will be extra patient.  And this means that I am baking sugar cookie dough at 9pm .   It is fine.    He did come back out after blowing up just a bit and said, “I don’t think you are going to make more like you promised.”    Ok, this gets back to some pretty deep trust issues he has with pretty much all adults, including us,  Mom and dad.   We believehis trouble trusting others comes from all the medical trauma he experienced since he was a baby and numerous hospitalizations and even further trauma experiences with ABA where he was restrained, including by us, parents he should feel safe with and this caused more fractures in our relationship.  

So, making cookies, at 9pm when he expressed what the issue came down to, trust, and I can either simply make the dough (to be rolled out tomorrow) and everything just ends now or I could just say not tonight.  But I could, so I did.  Just like he “does “ when he can.  

And after I make the dough, he has forgotten all about the earlier struggles.  He has moved on.  We are now all sitting, yes all 5 of us and 3 dogs sitting in the same room watching “Nailed it”.    Laughing has helped regulate all of us.  To bring us back to this moment.  A moment we are sharing together. Laughing at the silly antics of bakers who don’t know how to bake.  

So, all in all a win for the night.  No he still hasn’t taken his meds.   I will hopefully be more successful tomorrow.  He will have his cookies.  I do know he will, if he can.  And if he can’t, I will have some more detective work to do.  And as always, co regulating with him.  Ensuring I am regulated to be the safe person he can trust.  That is all I can do.  I will definitely take 2 walks tomorrow. That helps me to regulate my self to be able to maintain my calm so I can share it.   Hey, I will never say this autism life is easy.  But what is easy?   What I do know is it could certainly be worse and how I respond can make things worse.  I am the adult, so it is up to me to be the calm when he is in a storm.  It is us adults that need to meet him where he is at (and yes this changes regularly), but we then have a choice to support him or escalate him.  These moments I choose to support him.  I have to.  We love him and it is our job to support him and help him be successful.  No matter what that looks like.  Like I said, it is not easy.  But it sure is easier then dealing with an escalated child, which typically escalates us adults despite our greatest efforts.  I call it getting sucked in.  It is easy to get sucked into the drama, the chaos.  It is harder to be the adult and stay calm and regulated and stay in our thinking brain to assess and make good decisions on the best way to help him.  But 10 out of 10 times, this is exactly what he needs and what helps him.   Period!!!  

So sometimes I find myself making cookies at 9pm at night.  Or making Asian Noodles for dinner for 5 days in a row.  Or closing all the cupboards after he opened them all.  Life is never boring in this autism world.  It is just what needs to happen sometimes.

ABA , can it cause toxic stress or trauma? I agree with Dr. Delahooke, YES it can!

 This is an excellent post from Dr. Delahooke.   The research is widely available and too many are still following very outdated research that was not even based on actual kids.   

The explosion of the business money making model of ABA needs to change.  It is not serving our kids or helping them and as stated below, (and as many can attest to) it is causing further issues for our kids.   I know this part first hand.    

There are alternatives to support our kids.   You are never alone in helping your child.   But the research has now shown ABA to not be the gold standard and yet it is still what our schools utilize first line and what parents are told to seek as soon as they receive an Autism diagnosis for their child.  Or if a parent is seeking support for other “behavioral “ issues.  We need to shift this paradigm to one that is actually based on brain science that explains why kids can be challenging and how to support them.  Control and manipulation does not work!!! It only creates more behaviors.   

Compassion over control

Connection over compliance 

Kids do well if they can, if they can’t, WHY not?  The why is what we need to figure out.  What is the WHY that lies beneath the behaviors?  I highly recommend her book “Beyond Behaviors”.  Wish I had it 10 years ago.

From Dr. Mona Delahooke, PhD.:

Does ABA (Applied Behavioral Analysis) have the potential to cause toxic stress or trauma? 

Unfortunately, I believe the answer is yes. 

Behaviors are simply a signal of how the child’s body is moving in response to the sensations they are experiencing. The more intense the movement, (yelling, kicking, running away) the more the body is interpreting the need to move by coding the sensation as threatening. Sensations can be as simple (and invisible) as a sound, a smell, or the look on someone else’s face. They aren’t always in the child’s awareness, they are most often subconscious.

When we ignore, or worse, punish the signal, we are in essence, telling the child that they need to override their sensations, and that we don’t think those sensations (behaviors)  are worthy of our (the adult’s) care and attention.  When a person’s distress is consistently ignored over a long period of time, this can cause toxic stress.

If your child has ABA therapy and behavioral manipulation is the sole focus of therapy, I urge caution.

Please understand that this is a brand- new paradigm I’m talking about that’s not popular in education or psychology—yet. Don’t stress out, your child knows you love them and that is what carries the day. But if you want to learn more, I write about the alternatives to ABA in my book, Beyond Behaviors. #neurodiversity  #compassion  #autism #autismacceptance #Beyondbehaviors #specialeducation #AutismTreatment #relationshipsfirst

Trust Your Instincts

 This is from Tina Payne Bryson, PhD.  She refers to babies in this post, but it can be applied across the board to parenting kids of all ages, and especially our kids with special needs.  Parental instincts are important to listen to.  

In our specific case, if we hadn’t pushed the doctors, requested second opinions and continued to seek help for our son, we were told by the doctor (who finally listened to us and took our concerns serious) that we were lucky we kept pushing to get the right care for our son.  At age 2, during his first colonoscopy/endoscopy procedure, he found so much intestinal damage, imflammation, ulcers and his bowels were so stretched they were on the verge of perforation.  Bowel perforation is very dangerous and our sons was so bad, if it had happened he could have died from it.   

This was shocking and scary as hell to hear.  And yet, our instincts were right. We knew something was wrong with our son, and we were not going to give up until we found answers.  

This was our first lesson in trusting our instincts and not just taking a professionals word.  If it doesn’t seem right, it probably isn’t.  Our situation was obviously more severe than many.  But this is why I feel parent empowerment is so important and trusting your instincts when it comes to our children.  We know our kids best.  

That is why I always say, we are our child’s best advocate.  

ps...I highly recommend any of her books, but especially the “Whole Brain Child” co authored with Dr. Dan Siegel.   

Dr. Tina Bryson:    I don’t know who needs to hear this today, but please know that there are many, many ways to be a great parent.  Of course it’s helpful to listen to friends and family and experts, and to consider science when making decisions about your child.  That’s the fundamental principle my latest book is based on.  Knowledge is power, and most of us step into parenting not knowing much about all the details and decisions and options and science available to us.  That’s why we listen to others.  And yes, it's important that you question your own preconceived opinions and biases when faced with new information.  But ultimately, this is your baby, and your family that you’re deciding about.  Every child and parent and family constellation is unique.  You need the information, along with consideration of your traditions and values, while paying attention to your parental instincts and your child’s ever-changing individual needs.  Then you can make the decision that makes the most sense for your child, yourself, and your family. 

#wholebrainparenting #mentalwellness #mentallyhealthy

Behaviors are a signal...but ABA is outdated

Response to a post by Dr. Delahooke

“A human's behaviors are a SIGNAL of what's going on under the tip of the iceberg. One important signal is of the state of our nervous system, our physiology, driving the behaviors. That makes them ADAPTIVE to the child's experience. BF Skinner, who developed behavior theory didn't know this. We do now. We can do better and move away from manipulating children's behaviors (signals) to learning just what those signals mean for each child, and then compassionately addressing the causes and triggers. That's the new paradigm in understanding what drives our little (and big) humans”. #Beyondbehaviors #education #positiveparenting #specialeducation

 

My reply

Thank you.  Too many still believe the Skinner model of behaviorism and are this is what is used throughout our schools , and when it isnt effective because what lies beneath the childs observable behaviors are never understood or supported. Also, as soon as a parent is told their child has autism,  next step, ABA.  

The shift away from Skinner and behaviorism needs to happen and fast.  Our kids need us to understand them.  It is truly life altering for the child when a parent understands how to support them and understands the behaviors are just the signal....your book needs to be on everyone's bookshelf. It needs to be taught to therapists, educators,  and pediatricians, etc

 right.  If behaviors are “the issue”... they try to fix the behavior, instead of doing the hard detective work and finding out everything that lies beneath the “surface behavior “ we see.   Both outward visible signals and the not so obvious signals.  Different kids communicate in different ways....behaviors are always communication.....it is up to the adults to figure out the “why and the why now” (Dr. Stuart Shanker).

And using ABA for trauma is only compounding the child’s trauma.  This was my son.  He has multiple dx and co morbidities including trauma.  We are still repairing the huge fractures in his trust for anyone...ABA created bigger fractures in our relationship, esp since they used restraint and seclusion and “trained “ us to use.  It breaks my heart and soul everyday thinking about what we put him through.  We trusted the professionals.  Interestingly, when we questioned and wanted to understand the why behind the behaviors, no one ever had answers.  That is not what they do.  So manipulating kids to do what we want, in the name of therapy is harmful, traumatizing and needs to end.  It is still considered the gold standard.  Parents need to speak up, and say no to this.  We must listen to our kids( verbal or non verbal), and the adult autistics who talk about the horrible experiences of ABA.  I understand the desperation parents feel when they have a child who struggles with behaviors.  It is so hard and exhausting.  But so often, the compliance and control we seek (because this is “parenting” is what often  triggers our kids, because if they could comply with a demand, they would.  But if they lack a skill, especially if one of the skills is inability to communicate in an effective manor that conveys a meaningful message to another person, then they have multiple skills lacking and no way to communicate it more appropriately.  Because if they could, they would.  I 100% believe this.  Many of our kids struggle to just stay regulated, which is why o5 seems many struggle with EVERYTHING!!!  The overwhelmed nervous system and how it takes over the body is real and until we understand how to support our kids through co regulation, compassion and connection nothing else matters.  Parent empowerment is so important.  We know our kids best.  And we are told we are “just the parents”, and to listen to the experts.  We also have to trust ourselves.  Professionals can be wrong.  They are human.   Books like “Beyond Behaviors” is a gift to parents, to help them learn how to be the detective and become the advocate their child needs.   We are our kids best advocate!!!   

Difficult beginnings bring challenging moments

 This is a quote from Dr. Lori Desautels, author 

of “Connections over Compliance - Rewiring our Perceptions of Discipline.  A brain science approach to supporting our differently wired kids.  

“Children from difficult beginnings often cannot tolerate failure or being wrong. The sense of failure subconsciously often reminds them of deeper losses, and triggers embodied memories deep in their core.  

Behaviors communicate brain and body states!”

This speaks to me.  The struggles for my son with being wrong or perceived failure has always triggered him.  It is so important for us to understand the why behind all the behaviors and struggles.  The Why leads us to what lies beneath what “we see”.  Our son is “never wrong” and it triggers him immediately to blame others. It is really challenging at times, but this post from Dr. Desautels reminds me, why these are challenges for him. It is the trauma he experienced for so long, through his chronic pain and numerous hospitalizations.  Behaviors communicate brain and body states.  All we can do is be present with him when his brain and body state becomes dysregulated.  Co regulation, not correction.  Compassion, not control.  Connecting with him , not compliance.   When he is in these down stairs brain states, we just need to be present and connected to him.  This will lead him back to a more regulated and relationally safe place, where we can work together on these challenges.  It can never happen unless he feels safe with us.  His struggles are always windows into his traumatic experiences that are still present and easily triggered.  

Here is my Twitter response to her post.

Oh so true! It is so hard to see my son struggle with these issues, knowing it is reminding him of his trauma. You can see it in how he responds to “being wrong” or not living up to his expectations for himself.  His body state changes so quickly, all we can do, be present w/ him.  

But understanding this about him and the why behind these behaviors or triggered responses to something we may not understand has helped change our mindset to seeing him as struggling, needing our support in these moments.  That his trauma is controlling him and he is having lived experiences that easily take hold of him and don’t let go easily.  Feelings of safety, connection with us and showing compassion and empathy, to support him through these difficult moments that bring him back to those states of panic, pain, fear, raw vulnerability that is his lived past experiences.   

Many things create a firestorm for him.  Feelings of “being wrong” or feelings of failure easily trigger his trauma which is expressed through observable behaviors, frustration, or agitation.  This is when we know, drop demands, slow the world down, be present and calm.  For our son, this looks like us just sitting.  No words, no movements, no anything.  Just physical presents and sharing our calm.

Medical model vs social model

 So much of what we were told by experts was from the medical model of disability.  However, interventions that are guided by  the medical model usually take the form of power, control and fitting a square peg into a round hole system. 

Not until things progressed to a crisis point, using the medical model methods of therapy and intervention that we re evaluated our approach to supporting our son.  Following his lead.  

We found great benefit when using  this social model of disability to really understand how best to support him, having more compassion and patience, and dropping the power struggles and meeting him where he is at, at any given moment.

The Emotional Cup

 The emotional cup will either help a child be calm, regulated, present and feeling safe; or the emotional cup can cause a child to feel unsafe, to flip their lids, to meltdown, become aggressive or hide away, or to have any challenging behavior that signals distress.

It becomes either a child managing their emotional regulation and using the top down approach to problem solving, frustration tolerance or ability to adapt to a situation.  In other words they are able to use their “thinking brain”. Or the child is in their downstairs brain, using the bottom up approach to these struggles.  This usually results in tantrums, meltdowns, distress and many other acts that are seen as “misbehaving”.

 

The child who is in their downstairs brain is less likely to be able to regulate their emotions and control their bodies .  They can quickly lose control and their nervous system takes over and that is when we see the fight, flight, freeze or collapse responses.  These are stress responses that the child has no control over and is the signal they need our help and support.  This is through a calm, present, connected caregiver that lends their calm through co regulation.  

Some of our kids struggle to maintain self regulation.  Especially our kids with developmental delays.  As parents, we have choices when we see our children struggling.  We can either create further stress for them by yelling, offering consequences, threatening time outs  or loss of privilege.  

This implies the child is in control of their behavior and choosing to misbehave.  But far too often, this is not the case, and the child has moved into their downstairs brain and is having a stress response.  Any number of things could be the cause.  But right now, the focus is supporting the child.  This is the same as an alarm system.  However the warning signals that lead up to the alarm bells ringing, were missed and don’t really matter at this point.  This is not the time to “teach a lesson” or work on any skill or try to rationalize with them.  Being connected, present and providing relational safety is the only thing that will help the child at this point .  They are in their downstairs brain and need co regulation to be able to move up the brain ladder and gain some emotional control.  That’s it.  That is all that should happen in these moments.  As hard as it can be for us, the adults, we need to make sure we are calm and able to share our calm. 

Now this may seem impossible during heated moments.  Oh I know it.  It can be hard.  This is why self care and self compassion is even more important for us.  We can’t lose our calm and then expect our children to be calm.  It is really scary from the child’s perspective when the adult has lost their control.  This can quickly escalate things.

This  creates the cycle of meltdown for everyone.  Those are really stressful moments.  But we are the adults.  It goes without saying we need to be the adults in these situations.  Period.  And it is hard.  

Keeping calm isn’t always easy to  maintain in ourselves.  I learned an easy way to gain my composure using 3 words I say to myself.  Three easy steps to help my child.  Stop, drop and breathe! 

This can quickly regulate ourselves to then immediately be able to support our child.  We all know escalating a situation never helps the situation.  If we “react” to our child’s behavior, we are creating a bigger storm.  

So even in a moment , we can quickly catch ourselves , by first recognizing  to “stop” further reactive response. Then drop, refers to dropping our shoulders. This brings us body awareness that let’s go of tension, brings us back the the present moment and creates a calmer body to share with our child.   

Okay, so we have our first thought to stop ourselves from any further reactive response to our child.  Then by dropping our shoulders, we let go of tension that was stirring in our body.  It brings us back to this critical moment that we need to help our child.  And we need to gain calm to share our calm.  Third step is to breathe.  Take a deep breath in and exhale slowly  through our mouth.  This is a regulatory practice that focuses our mind and our body to be in a calm brain state, be available to our child and recognize the best way to support our child during this stressful moment for them.  We take ourselves out of the chaos and can then bring relational safety and connection to our child, which is what calms them down and brings them back to an emotional regulated brain state through our co regulation. 

This is what helps our children when they are having a hard time.  When our children are at their worst, we must be at our best.  It can be hard for sure.  But if we ensure our own emotional cup is full and when it is not, we have self compassion and practice self care to refill our cup so that we can be there for our children when they need us the most.  

We can also be proactive in helping our children have a full emotional cup.  And when it needs a refill, they most likely will need our help refilling their cup.  If we notice a low emotional cup, we can be proactive before any emotional dysregulation causes the downstairs brain to start to take over and through connection such as reading a book together or going for a walk, these together activities bring co regulation to help refill their emotional cup.  So does playing with friends,  doing art, or participation in their favorite activities.  These are some ways to support our children and can help refill their emotional cup to support their own regulated brain state which helps them maintain calm and an organized brain to learn, think and problem solve.  

What helps fill your emotional cup?

Music to my ears

 While cooking dinner tonight, and after several weeks of more struggles with our boy, I heard some happy noises coming from the other room.

He was quizzing dad on “what song is this and by what band?”

Hearing those 2 talking music, laughing and being present together was like music to my ears!   

These are the moments that get us through the challenging moments.  He was happy, laughing and completely engaged.  It was pure joy.