This was a moment I never want to re live......but yet it saved our boy

This was a FB memory that popped up a few days ago.  I saved it.  I wasn’t ready to re live that moment that I wrote about.  It was one of the worst moments we experienced with our boy.  It was I’m sure  one of the scariest moments for our boy.  So many factors intersected at that moment that created this event.
But it leads me to today. I can’t go back and fix that moment.  Although I wish I could.  It was the beginning of several  more difficult moments that resulted in the scariest summer that just wouldn’t stop spiraling out of control.  But it was also the summer where we decided we had to take control and do whatever was necessary to literally save our boy.  And this is when we turned to cannabis for him.

Here is the post from that moment in June 2015.

I was hoping to be posting how excited I was that Ty was participating in a basketball camp this week...... he did it last summer (a DIFFERENT camp)- but he was excited as he LOVES basketball!
Unfortunately, it was just too much for him - it was only 2 hour camp- but there was loud music during warm ups, so many kids, lots of "cheer" type team yelling and well......... his body just couldn't tolerate that environment- even to play basketball!   He didn't even make it into the car before melting down.... he attempted to jump out of the car when I tried to drive home- Brian had to come help me as I sat parked on Oak St- with a raging boy....   and then he kicked our windshield in the middle of his rage- and broke the windshield- yep it was simply TOO MUCH for him....... yesterday was so hard- I hated seeing what was happening to my boy- haven't seen that in quite a while- this was a bad meltdown-     These are the days that I hate Autism..... my boy just wanted to play basketball like other kids- it was only a 2 hour camp-   but to say it sent him into absolute sensory overload is an understatement........   back to our bubble for a while to help him "calm" his being    -


Cannabis was the necessary medicine to help heal our boy.  Cannabis helped our boy be the little boy that he never got to be.  Like everything else it was a process.  It was hard work.  It required patience and time.  It required a lot of observation and note taking.  It required a lot of reading and learning. It required love and compassion.  It required laws that allowed us to have safe access to good quality whole plant cannabis.  Not just one component of the plant.  The entire plant.

 Cannabis contains over 500 distinct compounds.  These are called cannabinoids, terpenoids, flavonoids, and omega fatty acids. (“Learn About Cannabis”, UCLA Health; Cannabis Research Initiative).  CBD, THC, CBDa, THCa, CBG, CBN are just a few of the cannabinoids that are unique to cannabis that have been shown to have medical benefits.  Research has identified over 100 cannabinoids.  More research is still needed to see if they offer any health benefits.  As reference, we give our son microdose (.05ml) of indica THC.  This is what has allowed him to function as all children deserve.  This has allowed him to express joy, to smile and be happy, to laugh, to be in a calm enough state that allows him to breathe and be present.  What a gift this is to see in him!

If our experience leading up to the summer of 2015 was any indication that our boy was desperately communicating through his struggles, his challenges, his behaviors that he NEEDED help in a way we had never seen before, I cannot even comprehend what life would be like for him if we didn’t act on his cries for help.

 Our  boy just turned 16.  He will be starting the 10th grade in the fall.  He is managing the best he can under these pandemic circumstances.  He misses basketball.  But he has accepted that right now, there can be no basketball team.  Something out of his control, but yet he is able to maintain his control. This is what cannabis has done for our boy.  Everyone should have access to try it.  It is a medicine.  How many more lives could be saved if more people were able to have safe access to cannabis?

My boy is 16!,,

Just re posting this birthday post from 6 years ago.  When our boy turned 10!  This number at one point scared the hell out of me as what things would be like as our sweet but struggling boy grew up.  Well today he is 16!
This post says it all!  And is why he is our super hero and we are his biggest fans!

“Happy 10th Birthday to our Ty!

Ten years ago our lives forever changed by the beautiful gift of our only son.  At that time we had no idea what was in store for his life, the struggles he would endure, the medical problems, the developmental delays.
 But he truly is a gift- as he has taught US so much more than I ever knew about myself.  Because of him we are stronger than we ever thought possible.  His journey is an amazing lesson in life and has taught us to treasure each and every moment- and to truly appreciate the littlest of things- things that are usually overlooked or under appreciated.   He has brought a whole new meaning to the phrase "stop and smell the roses".......
He has his dog Gretchen now and she will continue to help us better help him so that he can experience more happiness and joy in his life.... he has taught us that sometimes things aren't so traditional, and that doesn't mean less, it's just a different way to experience life.  He is so passionate about what brings him joy- animals, dogs, basketball, all sports, science.... and loves to share his knowledge!
He has so many wonderful things to share with the world, and we will continue to help him express it and grow so that others can experience the wonderful joy he truly is.

 He really is a gift from God and we are so blessed to be his parents along this journey of life with him.  Happiest  10th birthday to our little boy-    life will continue to get better!   We promise!”

I do not give my consent for” seclusion and restraint”

Do you have a "no consent for seclusion or restraint letter" on file with your childs school ?

Do you think it can never happen to your child?  Your childs school is really helpful and understanding and would never do this?

Think again.  In the heat of a moment, in the middle of a meltdown  or another behavior ,  stress response it happens!  Even here in Davis!  It happens everywhere.

Unfortunately most teachers and staff are not properly trained to work with situations like this and more importantly are not properly trained to be proactive and understand all the ways to work with our kids that supports them,  and can recognize all the subtleties of dysregulation to be proactive and connect, co regulate before the bigger stress response/behavior gets to this point.   It can be done.
We need to protect our children from unsafe practices.

Excellent article and a must read !  It is too important for our kids safety and well being.

https://www.inclusionevolution.com/child-needs-no-consent-letter-restraint-seclusion/

This is a comment from another parent regarding this article:
         I can't believe this is happening in schools.  The woman at the desk didn't bat an eye.  This must be the norm at that school????????

This is my response to her comment:
              People see the child as the problem.  So of course the adults must react this way, ugh according to this thinking.  It is the child's issue.   If they just listened,  if they just did what they were told to do, if they just would have stopped when I told them to.  This is what happens everyday in our classrooms and schools.
These instances are just ones caught on camera.  It is sad.  And is causing so much damage to our already fragile children.   Our schools need to be trained and educated in proactive solutions and training of how to properly support our kids.  I know so many teachers who feel ill equipped to properly educate and work with most of our special needs kids.  They were trained for general ed and have no idea how to support the many kids in our gen ed classrooms that have some form of a disability that impacts their learning and   education. The paras supporting our kids in a 1 to 1 or 2 to 1 situation are also not trained in how to work with our kids.   This sets our kids up for failure from the beginning.  So when our kids are expected to do something or to follow a direction that they may not understand,  or their nervous system is already on high alert due to the full class environment,  the lights, the sounds, the smells, etc....so they r one demand away from a meltdown or behavior,  boom.
But yet the teacher has 29 other students to focus on.  How is it possible??  I do not fault teachers at all.  The system is flawed from the beginning and not set up to properly support and educate many of our kids.   We have to change this.

This post says it all!

I am reposting this excellent post from Alliance Against Seclusion and Restraint

This post says it all!!

”Trauma is in fact a “physical injury” to the brain. Studies show childhood trauma has lifelong impact on both mental and physical health.

This is info we all need to carry with us into our advocacy because we must disabuse schools and legislators of the notion that trauma isn’t a physical injury.

Trauma does permanent physiological damage to the brain. The brain is the most vital organ in the human body. Hence, damage done to the most vital organ in the body is indeed a “physical injury.”

Some states have banned restraints that “impede breathing.” What about restraints that impede the ability for a developing brain to function properly when exposed to persistent primal fight, flight, or freeze reactions?

Think about it.
#endseclusion“

https://m.youtube.com/watch?feature=youtu.be&v=95ovIJ3dsNk

 Dr. Nadine Burke Harris, California Surgeon General

It can AND should be better for our kids

Just found this gem of a podcast.  Take a listen.  The source is
Here this now.com.   Wow!!
This is why I continue to fight for change in our district.  Not one of you reading this should ever have to go through what my family dealt with (as well as many other families) as far back as 10 years ago.  10!  It doesn’t have to be this way, the information is there.  And now the district trying to implement PBIS and MTSS in junior high tells me they missed the mark years ago, and still missing it.  There is no playing catch up for our kids.  The system needs to change.
As scary as that sounds, it is happening all over the country and the world.  It needs to change in Davis.  Your kids deserve to be educated in a manner that allows them to access the curriculum, to be understood, and to be loved and treated with respect at ALL times.  I’ll never say it is too late for my son.  We work so hard everyday to support him.  But it could have been different.  It could have been better.  It could have saved him from further trauma.
And yes, many of our children suffer unnecessarily because they are misunderstood, they are told they are bad kids, they are punished excessively for behaviors that they have no control over (look at the brain science); and this starts when they are so young.  What happens when these kids are still not understood, still struggling with behaviors that are seen as intentional, they are still critisized for not staying in control or not listening, they are bullied, and still receive constant messages they are a problem at school.   These little kids, become big kids, with bigger issues.  I will never say it has been easy.  But now that my son is almost 16, I want other parents to know, it can be better.  We do not have to accept police being called on our young children because they are melting down due to sensory over reaction.  And yes this happens.  Seclusion happens. Restraint happens. Being sent out of district happens due to “behavior”.
I just don’t want anyone else’s child to have to go through some of these very real experiences.  It can’t continue!  Love to hear your thoughts if you watch this video!

https://youtu.be/mub55HVvQ14

Credit:  www.herethisnow.org

Photo credit:  Alliance Against Seclusion and Restraint

A great new Cannabis Podcast. A practical guide 101

Many of you already know our story about Cannabis and the incredible positive impact it has had on our son,( and our family).
I get asked all the time for more information, how to start, does it work, is it legal, etc.

Well, here is an awesome new Podcast called Doctors on Cannabis, featuring Dr. Karen Mo.

It is an incredibly helpful Cannabis 101

Take a listen.  Think of it as the practical guide to Cannabis.

https://soundcloud.com/alison-farley-199412237/medical-marijuana-101-how-to-dial-your-dose

Here is their website:  Doctors on Cannabis
https://www.doctorsoncannabis.com/

When rewards don’t work......why?

This this this.    How many years and tears at IEP meetings trying to help our son.  Even with our amazing professional team by our side, advocating for our son, the notion that our son had no control over his behaviors.  He was living in fight for flight, trying desperately to survive.   He didn't feel safe.  Period.  It isnt up to us to decide what us safe and unsafe.  This is his autonomic response.  Bottom up or body up behavior for survival,  not an intentional choice to "mis behave, to have an outburst, a meltdown,  fight".   No amount of reward offered could change this.  It only made the stress response worse.  If only people from the schools understood this.  Listened to the true experts which we were fortunate to have on our sons team of support.  But instead it was met with continual resistance,  with frustration, with misunderstanding that perpetuated the problems and continued to create more chaos for our son.  We must as a society,  community,  and local educators do better to understand the paradigm of behaviors.  Our kids lives depend on it.  Our kids can be successful.   They are like all kids who want to do good.  They do good when they can.  When they cant, it is up to us the adults all around them to figure out why?  What is causing this stress response in the child?  Why is the child not feeling safe?  Our kids and our schools all win when we propeyly support the social emotional development of each child and recognize that this is a developmental process.  And especially kids with known developmental delays, we must step back and help provide safety and connection first.  When we were continually met with so much resistance from our school, we knew our sons future was at stake.  We had to do everything in our power to help him.  To support him.  To help him grow, develop and be a little boy.  He had suffered so much already in his short life.    We were not going to let others who were choosing to ignore what our expert team said was critical for our sons development,  have anymore negative impact and continue to cause more unnecessary stress that has such a negative impact on our son.  It was clear to save our son, it was time to pull him out of school.  Ideal, no.  Necessary, yes.  And it was the best decision we could have ever made for him and our family.  And 9 years later,  we have the luxury now to look back and see what s good decision we made.  Despite all the judgement and criticism.   We knew what our son needed,  and it was not more stress, an overwhelmed nervous system, more chaos,  more discipline,  more anything;  except more moments of feeling safe and connected by those of us who loved him and know him.  And it helped get him to where he is today.   And as hard as it was, we do not have any regrets or have ever second guessed our decision.

......."t was my job to help the adults in Colwyn’s life embrace a more developmental understanding of his social-emotional development and its impact on his lack of behavioral control. I explained that instead of seeing a little boy exhibiting “bad behaviors,” I saw a child exhibiting “stress behaviors,” adaptations of his ANS working valiantly to help him feel safe. Colwyn’s disruptive behaviors were his body’s way of managing his neuroception of threat and trying to feel safe. The sticker chart was ineffective because every time he got another red dot, his stress increased, causing the emotional outbursts. In other words, these were bottom-up behaviors, not the result of his poor choices......."

https://www.psychotherapynetworker.org/magazine/article/2427/in-consultation/cfa5fb2c-1b19-405f-aa14-f745b4dd6979?utm_campaign=PN_R_WIR