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.

Holiday’s are cancelled??

 Thanksgiving is cancelled.  That is how so many are receiving the messages from the health experts on holidays and Covid.  

It is undeniable how bad the Covid pandemic is and continues to be rampant in every corner of this nation and everywhere in between.

I hear people complaining that this suggestion to change holiday plans is wrong and they will not change how they spend their holidays, regardless of who they put at risk.  This post isn’t about all the people who are going to do what they want regardless of risk to others.  This post is to give a perspective that maybe it isn’t as awful as one previously thought.

“Paradise in a Bubble”.  That is how I thought of our life so many years ago.  When Autism and its difficult struggles grabbed hold of our child, making far too many experiences unbearable and overwhelming, we saw we needed to do things differently.  Differently doesn’t mean wrong, bad or anything else negative .  It simply meant, we needed to look at the situation through our sons eyes, and use his lens as our guide as to what this different holiday experience should be like.

We tried it the “traditional “ way.  But with large families on both sides, it was inescapable to “keep it simple” in order to help our son be able to be included.  Most often he would hide, shutdown or simply need to escape.  He didn’t enjoy the experience.  He was in a state of being completely overwhelmed, his nervous system was on fire, and the assault to his body was traumatic.  This is not being over exaggerated.  These types of events, gatherings, experiences (no matter who was in attendance) was always an assault on his nervous system.  And too often the lengths he had to go to to just exist in these spaces and experiences was simply too much and his behaviors always communicated this.   

It wasn’t just Thanksgiving, or Christmas that presented issues.  It was birthdays, BBQs in the summer, family or friends gatherings in a casual way.  Large numbers of people was too overwhelming no matter how well we thought we prepared him, front loaded calm, or provided regulating tools. It just didn’t matter.  We began to understand this about our son.  It wasn’t our imagination that at every type of event such as mentioned above, his behaviors increased dramatically, he expressed so much more stress and frustration.  These events effected his eating, sleeping, and his every minute of every day until we closed up the “bubble “ to allow him to decompress.   This is exactly how we always explained it.  It was as clear as this.  These events would trigger a huge response in him, that it would take a week or more for him to recover and have a little joy back in his spirit.  Until the next “event”.  Which during the fall and winter there are so many back to back “special “ days or events, it ultimately just became one really difficult period of time.  And difficult is an understatement as he got a little older.  It came to a point where we had to decide, are these events, gatherings as special as they are, but at what cost to our son?   It became clear the cost was too great and we saw we needed to do things differently.  This is what our son needed.  This is what our family needed.

So it gets back to beliefs that because of the pandemic and people believing they cannot celebrate the way they always have, therefore the holidays are cancelled.  This is simply not true and it is important for our kids to see how this isn’t true.  Different, yes.  Cancelled and not important this year, absolutely not.

Our family so long ago, made the necessary decision to make our special holidays different in order for our entire family unit to enjoy it.  It is like that old saying, “doing the same thing over and over expecting different results is foolish.”  We knew things needed to change.  Our son didn’t need to change.  He is who he is.  And when he is well, physically, emotionally, psychologically what a joy to see him experience the world as all children should.  His laughter was music, his eyes shined and his jokes were hilarious. This was the boy we knew who was deep inside, and to help him be him, it did take extraordinary lengths to help him feel safe enough to be “himself”.  We were not going into deny him these positive self building experiences.  Our family unit is only as strong as the sum of our individual selves.  When one is not in balance, we are all out of balance.   With every child’s needs different, we began to shift our mindset to what we can do that brings joy to all of us, without sacrificing one of us.

Our holidays and our world changed.  But different does not mean less.  Our family unit celebrates just the same.  We make it special.  We make it different than other non holidays.  It is evident that it is a holiday in our house, even though we don’t go anywhere or have others over.  

But we make the day special no less.  We made our own traditions that the kids enjoy.  Our family enjoys together.  Isn’t this what the holidays are all about anyways?  Being together, enjoying each other, and this looks different for every family.  But for our family, it was kept to “just us”, and we created a special day.  Our tradition is watching the Macy’s Thanksgiving Day Parade; cooking a small turkey (usually just a breast because no one likes the darker meat); baking pies, lots of pies.  We make an apple, strawberry and of course pumpkin pie.  Always gluten and dairy free in our house.  Always delicious.  Everyone has their own favorite.  And no there is no such thing as too many pies!   We make mashed potatoes, green beans, and other things depending on the year and if there were any requests.  Sometimes dinner rolls, made fresh, definitely wine and the kids enjoy sparkling cider in “fancy glasses”.  I get out my fancy table cloth, my fine china (which was passed to me by my mom when we got married), and tall candles in my lovely fancy candlesticks that otherwise just collect dust the rest of the year.  I get fresh flowers and when it is all set, it looks beautiful.  It is what makes eating a meal at the same table, all the other days of the week different for just this one day.  The kids always say “it looks so fancy”.  The day is spent maybe taking a walk as a family.  We spend time playing.  We are together.  That is what it is all about.  And doing it this way, allows our son to also enjoy the day.  With no sacrifice to his being.  

This is how we have been doing holidays for many years now.  It is how it is for our family.  We make the day special.  We do not look outside to others to “make it special”.  We enjoy how our family celebrates.  It works for our family.  Our kids see it as “normal” even when other adults do not.  These holidays are what we make them.  Our kids have seen that we can make them great, even if we don’t go anywhere or have others over.  Our family unit together, healthy  and enjoying each moment throughout the day is what they will remember.  That we have the power within ourselves to make something special.  We do not need external experiences to bring us joy.  We find joy from within.  Yes, extended family is important and special.  But, when the family is so large that nothing is “simple”, it is always many people, loud, busy, a sensory processing nightmare for those that can’t tolerate that type of environment, even if it is family.  The nervous system does not care what is creating the assault.  It just knows to react out of protection and relational safety because it is TOO MUCH!   (By the way, our little Apple doesn’t fall far from the tree.  Having two very introverted parents and even sisters who can tolerate much more, but preference is to “keep things low key” is clearly a family trait!).

If kids hear holidays are cancelled, we can’t do this or that, then sure naturally this is upsetting and disappointing.  But if, as parents we frame it differently, if we choose our words to say the holiday may look different, but it is still so special and this is necessary to keep our family safe, to keep our extended family safe, and come up with new special experiences to create a special day, then everyone will be just fine.  Our kids hear us and follow us as to how to process everything.  If we are okay, they will be okay.  My kids are okay, because we are okay.  We make it ours.  Isn’t  that what holidays are about?  Special days celebrating in ways that everyone can enjoy safely.  

Now for most others, this will probably be a one time change.  Just while the pandemic is in full throttle.  So just this year, a little different.  For us, this is our normal every year for well over a decade. Sometimes it takes something external to make us slow things down, to get out of the race of life (because we know life is not a race, it is one day at a time), and  to simply be more present more often.  This is our life’s motto, and so we simply enjoy how we celebrate our special days and all the other days as well.  It is this collection of moments that lead to joyous memories and experiences that are important for everyone’s well being.   Especially our children.

Our perspective is definitely different than most.  I get that.  Some say they feel sad for us, that our kids are missing out on something others view “ as normal “.  But as a parent, your perspective dramatically changes when you have a child that needs something different.  And this “different” is our normal, our “new normal” and when our kids see that the world is different for everyone, and that the idea of “normal” is dependent on one persons experiences, wow!  I see how this perspective has helped shape our kids to be compassionate, empathetic and incredibly generous human beings.  

So if you are concerned that your child will be upset or angry that holidays NEED to look different due to the global pandemic crisis everyone is experiencing, in order to keep yourselves and others healthy and we all have a part in containing this virus,  I think kids will be just fine if you, the parents, are fine. We set the tone and how we respond is mirrored by our kids.  So far, I think kids have actually adjusted far better than most adults during these last 8 months of pandemic life.  We probably could all take some cues from them.  It really is about making the best of a situation.  Making the best damn lemonade out of the most sour lemons.  Sometimes we just don’t have the luxury of doing what we want.  Sometimes we are forced into a situation that we may not have actually chosen if given a choice.  But in the end, we are so much better for it.  It is almost as if our sons autism actually helped shape a better perspective on life and what it means to live joyfully and simply.  It is never external things that do this.  It only comes from within each of us.  It really is about the simple experiences that bring lasting memories of happiness . 

We do holidays our way.  There is no right or wrong way (except please remember this year with the pandemic, gatherings put far too many at risk; so please do your part this year).  

It is just different, and that can be just as special, if you change your mindset!  

Holidays are not cancelled.  They simply need to be altered using a new perspective but are still as special as before.  Just different.  How will you make the holidays special this year?

What kids NEED before academics

 

This.....seriously our kids NEED all this before academics.  Esp younger kids.  And your kids will be fine and even more resilient and internally motivated to explore THEIR interests.  

Parents, it is okay if DL isn’t working.  It is to be expected esp among younger kids.  Learning does not mean academics.  Learning is what our kids do not get enough of through their own self interests, exploration, and trial and error.  

Academics is given to them to follow what they are being told.  And now with DL, this is the time to step back and see what kids really NEED to support them during this global pandemic.  

If DL is a power struggle with your child, step away.  If your child needs to move while DL, that is actually very normal child signaling movement helps them focus.  Don’t squash it, embrace it.  No child learns anything by sitting still, watching and just “listening” period.  Empower yourself to know what your child NEEDS during this time.  Embrace how your child learns and is motivated to engage and let the child be the guide.  Our kids want to learn.  They are born curious.  Give them access to learn the way the that helps them thrive and want to learn more!  A school building won’t do this.  

V

Rather than continuing to hope something improves, embrace this opportunity to be the learning partner with your child.  Plan a meal and cook.  Discover bugs in the garden then go research them.  Look at the night sky and then learn about planetary science.  Write a book together and include drawings from your child.  Find everyday objects in the house that are certain shapes, angles and have the child draw them.  Have left over candy, do candy experiments.......take a natural walk and find things that start with every letter of the alphabet.  Read read read read with your child, have your child read with you.  And then read some more.  This is what learning can look like when we take a step back away from boring worksheets that are not good for children anyway.  Do rock math.  Create a play scene rock quarry with toy trucks, have rocks, and trucks need to make a delivery of rocks....visual math concepts like this grow into learning and understanding.  Not just memorizing.  Make it all FUN!  As school should be anyway.....I’m pretty certain the pandemic isn’t going away anytime soon.  Waiting for things to improve while our children are still growing, developing and wanting to learn is missing out on a huge opportunity to keep them thriving!!!!  It is about dancing in the rain rather than waiting for the storm to pass!  Have fun with your children.  Enjoy this time with them.  See what ignites their spark of curiosity!  You might just be surprised.  Our kids are always surprising us.  It is great!

A look back and how we started to look forward

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

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

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

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

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

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

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

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

Here is the post from July

My mornings.....

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

Attention seeking or Connection seeking?

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

Parenting your own path

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

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

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

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

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

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

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

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

 FB memory Oct. 9, 2016

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

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

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

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

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

FB memory Oct 9, 2013

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

 It's these moments that we treasure!

Ahhhhh.....

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

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

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

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

I may not understand it, but I always respect it

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

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

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

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

Original FB post by Greg Santucci, OT:

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

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

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

Requiring eye contact is ableist, and hypocritical.

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

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

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

Well, HEY! They're trying to REGULATE! 

Please remove eye contact goals from any intervention plan.

The First WHY!

 “The First Why”

Sometimes it is nice to have a reminder😊.  Patience patience patience.  Our timelines most likely don’t match up with our kids.  This alone can cause stress and chaos.  My son needed about 45 min to an hour just to simply gather himself to leave the house and get in the car.  If I didn’t plan for this time, it wasn’t going to work without major struggles and stress response behaviors.  He needed to gather his random transition items.  It isn’t easy, but it was necessary.  Otherwise we had huge behaviors that became more dangerous as he got older.  But if I planned, prepared him well in advance, took time to make sure he had “all his items”. ( and there was a lot of items, but it helped him feel safe).  This reduced behaviors when we had to pick up sister from school.  This was our predictable transition out of the house.

(No there was no surprise need to leave the house, and if we did yes it was always met with not just resistance, but literally a fight).  This is why we needed to plan our world around these issues.  So we minimized and made arrangements to support our son.  Throwing him into these situations that for most others were without much thought, created a firestorm.   We weren’t listening to him.  He was communicating through his behaviors that he could not handle the situation.  It was consistent.  We had a choice to listen to this and figure out the why that was lying beneath this behavior.  It was our job to figure out why this type of situation created so much stress for him and how we can support him to help relieve the anxiety and stress that drives his body to this level of fear and survival.  

But first we had to see him as our boy who is struggling needing our help.  Not as a boy who was being disruptive, mean or difficult.  He was not a bad kid.  He was not intentionally behaving this way.  He was not in control of his body and his response to what was happening.  His body took over to tell him he needs to survive and nothing else matters.  Was it really a life threatening situation?  No.  It was the simple action of leaving the house, getting into a car, and driving 1/4 mile to his sisters school to pick her up and bring her home.  That’s it.  Seems simple, right?   But this created so much anxiety and a negative stress response that it was never routine and never simple.  

This is a part of our autism world.  Our  sons autism and trauma world.  A world that overwhelms him and his body and has created so much chaos to be able to thrive and grow and enjoy life.  

But we listened.  We listened to what was happening.  We saw our boy as struggling.  We saw we needed to do things differently.  This included lessening the stimuli in his world to help get him into a calmer state.  A state where he could exist. Where he could breathe and just co regulate with us.  It was simply being together.  Following his lead.  Seeing what he needed which was always expressed through his body.  It took us awhile to understand this.  Unfortunately we were led by “experts”  down the path that he was being intentional and purposeful in his behaviors.  But he wasn’t.  His experiences led him to this place of fear, distress and need to fight for his own survival.  It goes all the way back to his first days of life.  He was in pain.  He experienced chronic pain for several years.  We knew this.  We knew our baby.  The way he cried was different.  It was pain and absolute distress crying.  We knew.  Unfortunately too many around us didn’t listen to us.  But we didn’t give up.

We had to get our confidence back to understand that we did know our child.  Yes, most experts , professionals didn’t understand.  Nothing made sense to them.  Therefore it wasn’t really what was happening.  Professionals do not like when things are unfamiliar and not textbook or neatly wrapped up in a clean box.  Therefore, we were wrong.  But we knew better.

We knew our child.  Unfortunately leaving our home, for any reason became a major obstacle for him, shortly after his big cecostomy surgery and 2 week hospital stay at age 4 1/2.  So much that it drove his behaviors.  And rather than forcing this scenario that clearly was so distressing to him that his body took over and was in survival mode, we had to listen.  We had to see what was happening.  Why was this so difficult?  Why did he feel this way?  What was happening inside his body to go to his downstairs brain that felt so unsafe he needed to either fight, run away or hide to not go into this situation which was leaving our home environment?  These were our questions.  These were our questions for the professionals that we were always met with wonder, confusion and “I don’t know” responses.

This is why I started Paradise In A Bubble blog.  It is a diary of our days.  When we stayed home, didn’t see others (anyone outside our family unit that lived in our home), kept things predictable, same, calm and when we did this we saw our little boy.  This helped him be a little boy.  Knowing this, and seeing this pattern, why would we not do everything to support him even if it meant disrupting what society calls “normal” living?  Yes, most did not understand.  Many thought we were crazy and even being unfair to our girls.  Many expressed their concerns that we were creating the dysfunction.  Rather the “ dysfunction” was there from the day he was born because of his medical needs and hospital visits and doctors appt.  This was not created by us.  This was our response to what he needed.

  It looked different than what most people consider to be “normal”.  Well, when you have a child who is very sick, there is no “normal” .  You create your new normal.   You do what you can to provide for your child, to support your child, to respond to his needs, no matter what that looks like.  And that is what we did.  

We created a world where he could exist.  Where he could play, where he could relax, where he could grow, thrive and feel happy.  The paradise in the blog name refers to our little boy being happy.  This is paradise for  a parent.  I say it is in a bubble because until we created a world around him that was one that he could feel calm, that was predictable, familiar, full of regulating moments; a place that provided  him with a feeling of safety because without this, he  just couldn’t breathe essentially..  He could not be calm.  He could not be attentive.  He could not exist.  He would be so dysregulated and trying desperately to figure out how to process everything external to him.  You could see it in his eyes, in his body.  And eventually in his behaviors.  

Whether he was fighting (for no reason, literally just melting down) ; or him literally running.  Running anywhere in any direction without any sense of his own safety.  His body was just getting “out of there” and it didn’t matter where.  Just not where he was.  This is frightening as a parent.  He has run in parking lots never noticing the moving cars.  He has run out of doctors offices, down the busy street.  He has run away from schools and was found hiding in the bushes about a block away.  He has run away at night and we found him hiding underneath a neighbors car.  He has run away and was found by friends helping look for him.  He had gotten almost a quarter mile away and was up on an overpass walking somewhere.    These experiences are so scary for us and for him.  How can we not do everything possible to figure out his “Why?”.  His “why” was perplexing to all the doctors and therapists.  His “Why” caused him so much distress that he wasn’t developing and thriving as growing children should.  His “why” was at times terrifying that we had to do everything in our power as parents to help figure out his “why.  His “why” was like the golden ticket to his success; no matter what that looks like.  I am pretty sure if you ask any parent what success for their child looks like to them they would respond that it would look like joy.  

I would describe it as a joyful, present child who explores their world, is curious about the world around them, is thriving in someway;  a child that is changing and developing new skills, making some level of progress, any progress, big or little, just something.  The basic life functions that we do not even think about, such as eating when hungry, drinking when thirsty, sleeping (any type of sleeping ).  These basics did not come naturally and were quite difficult for him.  Why?    

His “why” in the beginning, by day 5 after he was born was pain and discomfort.  We knew that.  “Why” the pain was something we wouldn’t fully understand for several years.  

But it was our first answer to the first “why” question.  We still had a huge journey in front of us.  

That is why we never gave up hope.  Hope for him.  Hope he would see joy, feel joy and share joy.  That was all we wanted for him.  That is all we hope for him in his future.  And we will never give up trying to support him, to continue to follow his guidance and cues to what he needs.  We will always try our hardest to provide a safe, supportive loving connected environment where he can simply “be himself”.

A bit of inspiration

 Even the experts agree.  Do what is necessary to help support your child, not just during this pandemic time, but all the time.  Even if it isn’t popular.  You are the only one that lives in your shoes.  🙏💜✊