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.