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Technology ❤️ ACEs

 

TL;DR: Modern technology has the potential to contribute significantly to the healing, resiliency, happiness and community of people exposed to adverse childhood experiences (ACEs) - and generally disrupt the way we think interpersonal support can be provided. In this article the author explains his vision and proposes to establish a foundation with the aim of developing open source and open content apps, knowledge and methods in pursuit of these goals.

 

The confluence of need and technology

In recent years, the area of mobile health technology has seen rapid growth across many first world countries, and for a number of reasons.

 

Faced with an ever increasing number of people needing treatment for mental health issues and diseases like stress, anxiety and depression, but with budgets that are often very constrained and don’t necessarily grow with demand, the traditional mental health sector is strained.

 

Meanwhile, smartphones and internet services have become almost omnipresent, and offered through these services are a myriad of specialised mental health smartphone apps and web applications offering everything from self-monitoring, mindfulness regimes and breathing exercises, to cognitive behavioural therapy (CBT).

 

And mobile health technology does work very well for a lot of people. From assisting in the treatment of veterans suffering from debilitating PTSD to helping the Joneses curb their anxiety or stress in their everyday life, it has proven to be a worthy addition to mental self-empowerment that should not be overlooked.

 

The apps (whether smartphone or internet-based) generally do so by means of offering psychoeducational readings, multimedia content (e.g. audio and video), psychological interventions (e.g. step-by-step instructions on how to handle certain situations, emotions and interactions), scheduled reminders, and self-monitoring (virtual diaries, questionnaires, etc.).

 

The possible benefits

It could almost sound like the plethora of possibilities offered would translate to having a therapist right there in your pocket. And, to some degree, that’s right.

 

In terms of being able to offer support to people in their everyday life, and in the situations and contexts where they need it the most, technology-mediated therapy and resiliency building tools hold great potential. 

 

I would, however, personally rather think of mental health technology as being able to provide you with a context-relevant, well-informed, supportive sidekick. Because, as with all personal development, you have to do the hard work yourself - with all the help you can get.

 

Furthermore, with scalability and low cost being an inherent qualities of most software for smartphones and the web, many more people can get a supportive sidekick than would be possible just through face-to-face therapy.

 

Dare disrupt the field

Myself being an IT entrepreneur, consultant, and designer - with a noticeable ACE score - I got really interested in question of to which extent technology could be used to build mental resilience and new kinds of support networks. 

 

This very much so because of my desire to put my own experience with dealing with ACEs into good work, somehow converting the negative experiences and personal victories with those into further use as future positives for myself and others.

 

Having done a lot of self-development work myself over the years, and knowing the time, effort and cost associated with this, I wanted to try and build such technology that would help people build knowledge, strength, and resiliency in themselves and others at a fraction of the time, effort and cost.

 

I started building a technology platform to support my vision of all this, and meanwhile did some consulting for non-profits and public sector organisations working within the field to connect with subject-matter experts, gain experience and bring concrete value. 

 

Through my work, I met some really fantastic and committed people, and we did some great work in building software that every day helps people be more resilient.

 

But, I also quickly realised that I got disheartened by the amount of bureaucracy and red tape I encountered.

 

It appeared to me that many of the non-profits were fighting each other for financial resources (sometimes rather fiercely) from the same sources, and that they were sometimes almost too keen on launching high-profile mobile health projects as means to gain public interest and attract financial support, rather than on focusing on designing and realising the value that the software should bring the end users.

 

It also appeared to me that some of the public sector mental health institutions wanted the same kind of interest, and that they additionally suffered from a very strong form of “not invented here” bias: they each wanted to brand themselves as mobile health powerhouses, each more competent than the other, and therefore figured that they needed to build their own technology and interventions very much from scratch and according to their own budgets, often with narrow - and politically dictated - focus and constraints.

 

All in all, I guess that for any non-profit or public sector organisation, it’s obvious that you’ve got to work within the real politics of society, which can be tough, and I think this is basically what’s reflected in these examples. 

 

However, for someone like me, who carries a cross-disciplinary vision with the aim to rethink how we as a society and individuals supports mental health, empowerment and resiliency, and how we minimise the effects negative social inheritance, I quickly felt the conflict between the conservatism of these organisations and my own desire to really disrupt this field in a socially responsible way.

 

Without an obvious way to make this happen without venture capital and thus having to focus very much on profit-making, and with my day job (being the CEO of an IT software process consultancy), getting steadily more busy, I decided to open source the components of the platform that I had built at the time (called moodkick.com), hoping to somehow find some kindred spirits to continue the development effort with in an open way. It was actually the first open source software of its kind.

 

In the meantime, life happened. I met a wonderful girl with whom I’m getting married, and my day-time job as CEO of a IT software consultancy got busier, and as a result, work on MoodKick slowed down.

 

Then, about a year and a half ago, I discovered the ACE Study, and at that moment I knew that the personal, mental, and social freedom I had been fighting for so hard in my own life, but which had been hard to make other people understand, primarily due to lack of a real language in society about the stuff, and an often negative discourse about mental health in the media, was now suddenly described, had a proper language and was backed by solid scientific evidence. 

 

I felt like a person who, after having travelled the world in search for some deeper meaning and feeling of belonging, had finally met his kindred spirit, and through this meeting realised that the meaning had been with him all along. 

 

Besides getting all happy about this, I started out the web site beatace.org to help me compile and digest the huge amounts of content I read, while hopefully eventually also making it easier for others to delve into the subject.

 

How we can ❤️ the ACEs away

What I found to be extremely meaningful to me is a vision that we as a society can and should do much better in offering ways of letting people heal their mental trauma and build resiliency across a lifetime, and that doing this could, in fact, prove to be one of our civilisation’s finest and most important developments. And with a lot of positive repercussions all over society.

 

Therefore, it is my goal to establish an international foundation that develops knowledge, methods and technology, which helps people exposed to ACEs become more resilient while making it easier for them to give and get peer-based support across the world, healing their trauma, allowing them to live longer and better, assisting in stopping the transfer of negative social inheritance to their children, improving relationships, and enabling people to become even more proud of themselves and of the work they do to support themselves and each other.

 

I believe that the foundation should be non-profit, open source and open content, giving a wide range of organisations, professionals and individuals the possibility of contributing with knowledge, resources and support (and getting recognition for it), while ensuring that it can be used in many contexts and across technological platforms like smartphones, tablets, PCs - all around the world and localised to many languages and cultural differences.

 

I hope that my vision and project proposal will spark an interest, and I would love to discuss both with you. I need all the help I can get to make this foundation and technology reality, and hopefully help all of us beat those ACEs. ❤️

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Cissy & Thomas, I've a friend working on the north shore, for Commonwealth of Mass MH Quality Improvement, who previously worked as an english/hispanic translator with both District and Superior courts in N.H.--if suitable options for spanish translation don't materialize elsewhere.

Hi guys,

 

I've been working on an online open source ACE Toolkit, and I expect to be able to release a working prototype version of certain features next week (including an interactive ACE screening tool aimed at professionals).

 

I need all the help I can get in testing and improving it - and also for translating it into Spanish - so head over to https://www.pacesconnection.com/...kit-available-soon-1, read what it's all about, and engage in the brainstorm on new features. :-)

 

Hope to hear from you all. 

 

Best,

Thomas

Last edited by Thomas Peter Berntsen
Originally Posted by Christine Cissy White:

Dear Thomas:

I love a good hopeful and peer-informed initiative. I'm on the content writing side of things over at www.healwritenow.com and I write almost exclusively about how to live on earth when you were raised in hell.

How? with the question mark

and How. with the period

I share my own journey but also research lived experience experts and those with research or clinical approaches. I compile and translate and share the resources. I'd love to talk to see if there's a way to combine some energy/force. It sounds like you and I have similar missions and very different skill sets which might help us both keep doing this work.

Anyhow, no matter what - I'll be following your site and work.

I'm so excited to see how many of us are taking matters into our own hands, supporting ourselves and one another.

Like you, I find the ACE an accessible way into complex conversations and a way to cover a lot of topics. There's a lot of dismal news but there's hope as well and to me, the most helpful and hopeful part, is the communicating and advocacy being done that is from an experienced perspective and not only from the social worker or medical model which is often well-intentioned and kind-hearted but built around symptoms and sometimes pathologizes symptoms rather than address root causes.

Best to you! Cissy

Hi Cissy,

 

It's really fascinating how much empowerment one can experience by journeying through life with a openness towards treating oneself with kindness, empathy, and seeking artistic expression.

 

I think you have done some really great work on your website, and I would love to find out if we can combine forces and create some helpful materials for others to be empowered by.

 

Also, I think that your analysis with regards to how ACE makes accessible the way into complex conversations is spot on - what a great way to put it.

 

Best,

Thomas 

Originally Posted by Beth Grady MD:

Dear Thomas, 

 

Your post is well timed. I am a pediatrician serving low income, largely Spanish speaking families.  Having heard about the ACE study years ago, I have been trying to develop ways to screen for and help families and children with ACEs and to promote resilience.  At the same time, I have been learning about and screening more for learning and attention differences such as ADHD and dyslexia. As part of the latter I discovered the excellent website www.understood.org.  It is a website created by several nonprofits that has made it possible for me to show families, in the office, how to access information about learning and attention differences.  The fact that content is translatable into Spanish with the click of a button and that Reading Assist is easy to use makes all the difference. I have been wishing that there were a similar website for ACEs and Resilience.  There are some, such as www.resiliencetrumpsaces.org, but they are geared towards a professional audience, not the general public.  The great thing about www.understood.org is that I can show it to families in the clinic and then they can explore it at home. I don't know who the IT team was but they did a great job.  If there could be a similar website for ACEs and Resilience, that would be amazing.  

 

Thank you for your post. 

 

Beth 

 

Dear Beth,

 

Thank you very much for your reply.

 

I think your post provides a really good description of the type of tool that could be useful in many scenarios, and understood.org seems like a well-designed and very informative website. 

 

I would be very interested to build an open source and open content website which can serve as a tool for the uses you describe, and I would love to talk more with you on how that could be done.

 

Best,

Thomas

Hi guys,

 

Thanks so much for your replies to the post. I got caught up in vacation and being a busy bee at work for a time, but now I'm fortunately able to contribute some more, so let me reply to your posts.

 

Best,

Thomas

Originally Posted by John Trayser:

THE JOURNEY OF LIFE

 

The journey of life is the motion...to carry your Spirit with pride,

Where no little kindness is EVER wasted and feelings of joy you can't hide.

 

I've been at the crossroads where life meets death, a whole new level of cruel

And I was still looking for a silver lining, with goodness and giving as fuel.

 

To reach a level of comfort inside...where giving comes without measure

Leaving that as your Legacy...more riches than any man's treasure

 

There is no material possession that compares to the wholeness of love

Given without thought of consequence a brilliant light form above

 

If you're not living joyfully, using each day as a gift

You're missing the point...that while we're here, that's what it means to LIVE!

 

Let's not call it religion...it's more like a spiritual tide

that flows over us...if we let it...a feeling we should not hide.

 

So hold me please whenever you can and tell me what's behind your eyes

And spend more time looking inward...the answer is not in the skies

 

So if you're not living joyfully, using each day as a gift

You're missing the point that while we're here...That's what it means to Live!

 

 

 

 

 

 

 

 

 

 

 

 

 

Thank you for this beautiful poem John Trayser, sharing it with my teenage son as an inspiration 

Congratulations, Thomas on getting your website started.  Look forward to your "Beat" section!  That's the most challenging section, once you're familiar with ACEs etc.  Yes, the 'excitement'/aha moment of finding that what you are going through can be much explained by the ACEs and resilience score etc is, I think, quite profoundly life changing, if that's not too over the top! I had this vague idea years ago that one could put some kind of mathematical formulae onto what was going on, especially when people who have low/no ACEs etc didn't get it.  Ignorance for others about this can be 'bliss' maybe, but not for us!  It's a recognition that we're out there, we exist, we have a right to a healthy life, that we want to help others, that we are NOT going to be silent, we will spread the word as effectively as possible and that obviously this is not going to go away, but is a slow but sure movement.  Matching the researchers, specialists etc who get it with their progressive work and understanding with the majority who don't, should be the main game here, I believe. So please continue to check into this website too, to let us know how you're going and what you've found.  All the best!

Good morning Thomas and Cissy!

How spectacular it is to feel like my family is getting bigger each day! I needed to share this morning a few things that will bring us all closer...

I sat up last night until midnight talking with my 18 year old adopted grand daughter connecting the path of love that my son and his wife created to heal her ACE 7 heart from 9 years ago.  It was the continuation of our 8 hour drive/conversation from Chicago to Nashville on Friday. She texted her Mom that it was the best vacation ever...and we weren't even home yet!  As we are reading about ACE and Fact...not Fate...I saw the real life version of that unfold over the last few days.  She told me the quotes she wrote down in her journal from my book and how she uses them to help others. She knows that her life and her heart have been saved by the words and actions of her adoptive parents. She even confessed a recent small tatoo on her side that says..."Adoptive children grow in the hearts of their mothers."  She wrote that to honor Sara because or their blood line. She and her brother are the children of Sara's older sister. They were adopted as my son and Sara were newly pregnant.  The father was given one more chance my the state of California and was caught selling drugs at the Rehab Center...great marketing...continued poor judgment. He had offered his daughter pot at age 8...WTF!

As I read Thomas' blog this morning I feel a new wave of connectivity for all that we are trying to do.  He has beatACE.com....I have the domain and new site being built called ...NOACES.club and I know there are others.  Yet we need to have a National United Face to our effort.  So this is what I propose this morning...

 

The basic tenet on the back of my last book...The Greatful Dad...Saving Lives One Heart At A Time...is this:

 

When you go to the hospital to bring home your new baby and Dad is wheeling Mom down in the wheel chair...GOD...whichever one you believe in...finds your car in the parking lot and puts a load of bricks in the back of your car.  From the moment you arrive home...until the day you die...you have two choices of what you can do with those bricks.  You can build a PATH to create a safe and loving connection to your child's heart...or you can build a WALL between you.

 

So, as I was invited to give a speech at my secretary's son's high school...because she said I had changed her family's direction with my heart and wanted me to do that for others...she, without telling me...went to Hobby Lobby...and found little red clay bricks...glued four of them together and put a pin device on the back so you could wear it on your shirt/blouse/sweater! When people ask what that represents...it offers you the opportunity to say you believe in building Paths with your heart and not walls! I have heard from people that they have worn the bricks for more than 6 years and have built some wonderful relationships with that opening comment.  Isn't that what we all need...a Symbol that represents our desire to let our love out each day to anyone in need?

That same person listened to my idea for a movie and came up with bricks with a new small high powered magnet that we saw on Shark Tank that would not damage any clothing. It is a positive, concrete image of the love we all need daily to create the connections that are the start of all relationships. She is working on bids to see what they will cost. Could be a great fund raiser for our joint foundation...anyone have a great idea for the name?  I bought the domain name NoACEs.club so that it would feel right to JOIN a club that had as its sole mission our goal of NO ACES. Because my enthusiasm for this subject is tempered by the understanding that it is POST TRAUMA. Our goal needs to be...NO ACES. I've been trying to start a dialogue here in Nashville, the nation's capital of healthcare about ACEs and working to have ALL patients have an ACE score. How else can you treat what you don't know or see?

 

We all know immediately what we grew up with..a path or a wall.  How stunning it was for me to find the empirical evidence of ACE to verify the sadness of those parents who build walls.  The PATH is the use of love as mortar for all the simple heart felt teachable moments that we should be giving our children. Yet, if you only knew dysfunction...that seems to be what is passed on.  My book was written at the behest of a 3rd grade teacher who said in 22 years of teaching she had never had a student like my Jared. She said he watched over the entire class and school at times with a spirit that said..."Shouldn't we ALL be watching over each other. She then said my first grade son's teacher said my son Austin was the same bright spirit...in FIRST GRADE!

 

If you find a moment, go to YouTube and find my 27 minute speech from a few years ago at a Customer Service summit and see if you feel the sincerity of my heart.  The Greatful Dad message and name has been a bit too much Kumbayah for my business friends so I am moving forward as TheCaringGuy.com because I believe I can fix almost any problem by simply caring more...funny thing is...that is the last line of my speech I discovered the other day.

 

Cissy- I took your comment to heart about the movie title the other day...and in talking about it with my grand daughter we come up with this:  Serious Truth: Family Matters & The ACE Revolution

 

We now see it as a connective conversation with me, my son Jared...who shares his love like no one I know...and my grand daughter...sitting in a group and showing the world how love shared from the start can create a beautiful PATH between hearts...and how love can heal a shattered ACE 7 score as well. My Brogan will capture every heart with her wisdom and belief that each new day is an opportunity to create a new relationship.

In closing our conversation last night I gave her the words to my favorite song I've written:

THE JOURNEY OF LIFE

 

The journey of life is the motion...to carry your Spirit with pride,

Where no little kindness is EVER wasted and feelings of joy you can't hide.

 

I've been at the crossroads where life meets death, a whole new level of cruel

And I was still looking for a silver lining, with goodness and giving as fuel.

 

To reach a level of comfort inside...where giving comes without measure

Leaving that as your Legacy...more riches than any man's treasure

 

There is no material possession that compares to the wholeness of love

Given without thought of consequence a brilliant light form above

 

If you're not living joyfully, using each day as a gift

You're missing the point...that while we're here, that's what it means to LIVE!

 

Let's not call it religion...it's more like a spiritual tide

that flows over us...if we let it...a feeling we should not hide.

 

So hold me please whenever you can and tell me what's behind your eyes

And spend more time looking inward...the answer is not in the skies

 

So if you're not living joyfully, using each day as a gift

You're missing the point that while we're here...That's what it means to Live!

 

 

 

Maybe the bricks we all should  wear could launch our desired revolution...and join the NoAces.Club?

Thanks for the love this morning Thomas and Cissy!!!!  I felt the Path fire up my day!

 

 

 

 

 

 

 

 

 

 

Dear Thomas, 

 

Your post is well timed. I am a pediatrician serving low income, largely Spanish speaking families.  Having heard about the ACE study years ago, I have been trying to develop ways to screen for and help families and children with ACEs and to promote resilience.  At the same time, I have been learning about and screening more for learning and attention differences such as ADHD and dyslexia. As part of the latter I discovered the excellent website www.understood.org.  It is a website created by several nonprofits that has made it possible for me to show families, in the office, how to access information about learning and attention differences.  The fact that content is translatable into Spanish with the click of a button and that Reading Assist is easy to use makes all the difference. I have been wishing that there were a similar website for ACEs and Resilience.  There are some, such as www.resiliencetrumpsaces.org, but they are geared towards a professional audience, not the general public.  The great thing about www.understood.org is that I can show it to families in the clinic and then they can explore it at home. I don't know who the IT team was but they did a great job.  If there could be a similar website for ACEs and Resilience, that would be amazing.  

 

Thank you for your post. 

 

Beth 

 

Dear Thomas:

I love a good hopeful and peer-informed initiative. I'm on the content writing side of things over at www.healwritenow.com and I write almost exclusively about how to live on earth when you were raised in hell.

How? with the question mark

and How. with the period

I share my own journey but also research lived experience experts and those with research or clinical approaches. I compile and translate and share the resources. I'd love to talk to see if there's a way to combine some energy/force. It sounds like you and I have similar missions and very different skill sets which might help us both keep doing this work.

Anyhow, no matter what - I'll be following your site and work.

I'm so excited to see how many of us are taking matters into our own hands, supporting ourselves and one another.

Like you, I find the ACE an accessible way into complex conversations and a way to cover a lot of topics. There's a lot of dismal news but there's hope as well and to me, the most helpful and hopeful part, is the communicating and advocacy being done that is from an experienced perspective and not only from the social worker or medical model which is often well-intentioned and kind-hearted but built around symptoms and sometimes pathologizes symptoms rather than address root causes.

Best to you! Cissy

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