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I have worked in the special needs community, and now the addiction community for over 15 years. My son was diagnosed with childhood cancer, with complex chronic side effects to treatment that we've managed for 19 years. Some of these side effects echo what we know about ACES and it stands to reason that trauma has impact.  I see very little about what we know about ACEs extending into the community caring for children who are chronically ill. But I know what the stress looks like for us, and so many families I've met over the last two decades.  To refer to it as suffocating at times is putting it mildly.  What would the best certificate or degree be to begin to do some meaningful work to lay the foundation to extend what we know to the chronically ill?  I've worked in nonprofit leadership, but that isn't enough.  I'm at a point where I want to go back to school, and have considered being a therapist, but this seems like something that is so significantly lacking that it may be more important work for me to commit to.  Most of our families have no one to turn to for support, as we have children maturing into adults isolated, alone, terrified, and struggling.  It is heartbreaking to watch how so many of these kids suffer at 16, 18, 20, 23, 25 years. With no one who understands them, or offering more than " a really great camp experience" (which if one more person offers either my son or I a really great camp experience I think we'd scream), the lack of adequate services is resounding.  I'd welcome any feedback and thoughts, either by reply or private message. Thank you in advance for any responses.

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Hi Mary,

I am a registered nurse and working toward my doctor of nursing practice.  The difference between an DNP and PhD is that PhD's do the research and DNP's apply the research in the real world.  My capstone project is on building resiliency  in children who live in a neighborhood where high ACE scores are common.  

There are quite a few programs you can apply that will get you from your RN to DNP within a reasonable amount of time.  Contact me if you have more questions about these programs.

Denise

denise.buffin@bsd.k12.de.us

A few things come to mind:

1. Look at an MPH in public health. The emphasis is on population-scale intervention and research, and would provide you the tools and clout you need to move forward. A lot of prestigious programs (Johns Hopkins) are now partially online.

2. Look for a therapist certified in EMDR. It's almost a miracle tool for complex traumas. 

3. I hope you do look into this- as a therapist, I see a lot of kids who spent time in NICU and have severe problems with self-regulation even though they are now physically healthy. I'm sure cancer treatment is at least as traumatizing. Best of luck to you-

If you or your son has not tried it, I suggest looking at Neurofeedback.  The system I am familiar with is Neuroptimal, which is one-size-fits-all, non directive dynamical neurofeedback that simply acts as a mirror and allows the brain to track itself, become aware of itself, and thereby gradually adjust itself.  I got this for a child in foster care that I was the CASA for, and it was incredibly helpful.  Her anxiety remitted entirely.   She is thriving, over a year later.

Is there a way of gathering a support group, in a web based format like Skype, for kids who share these experiences?  

I am the director of clinical research for our medical school campus.  I agree that there is much to be done in research of the trauma of a chronic childhood illness and its effect on adult health, particularly mental health.  I have personal experience with this as I have a now adult child with type 1 diabetes.  In my opinion, the MPH route should get you the research foundation to get started quickly.  The most important thing in research today is forming a multidisciplinary team.  I would investigate your local medical school and/or college of public health to see who might be working in the field of trauma.  

Would be happy to talk directly!

Martina (and others) - I wanted to be sure that you knew about the ACES in Higher Education community we have on ACEs Connection.  It covers all aspects of HIgher Ed (which is a BIG task) but I know there is a lot of interest in including training on ACEs science and trauma informed care into medical school curricula.  Martina, if you or others are interested in connecting with other Universities working on this, let me know!

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