How to Start a Local Support Group

Parenting a child with developmental trauma and Reactive Attachment Disorder (RAD) is extremely isolating and difficult. As parents, we simply don’t fit into the typical parenting support groups. We need our own “extreme parenting” support groups which are hard to find. Finding community and support are key to our own mental wellness and providing the best care we can to our children.

If you’re considering starting your own local group, here are some tips to help you get started.

Keep it simple

  • Create a “come as you are” atmosphere with no strings or commitments. Some parents may only come once or may not be able to attend regularly. Make sure people know it’s okay to show up in their sweats, for just an hour, or only once every few months. This is the flexibility acceptance parents desperately need.
  • Don’t overcommit yourself as the leader. Start with scheduling single events or a monthly meetings rather than weekly meetings. Most parents of kids with trauma simply won’t have time to attend more frequently and as a leader it’s important to not overcommit.

Make it comfortable

  • Select a meeting place where people will feel comfortable to share. While meeting in a coffee shop can be convenient, remember how sensitive your discussions will be. Try to meet in a home, a church conference room, or private room at a local coffee shop.
  • Limit attendees to parents only. Having social workers, therapists and other professionals changes the tone and will make parents hesitant to share transparently.
  • Set ground rules ahead of time and repeat them at every meeting. Two important ones to include are:
    • Confidentiality – What’s shared in the meeting, stays in the meeting
    • Judgement-free – Parents need to be able to share their anger, frustration, sadness, and guilt without being judged.
    • Limited advice – It’s great to provide each other with ideas and resources, but the focus of your group should be to provide encouragement and a place to be heard.

Pick a format that works

Owl timer from Amazon
  • Organic Sharing. Parents are desperate to be heard and know they aren’t alone. A wonderful way to do this is to allow people to share their stories and updates on their lives. If you choose this format here are a few things to consider.
    • Make sure everyone has a chance to share. You can do this without seeming insensitive by using a fun timer – perhaps a 5 minutes – for each person.
    • Consider a talking stick for discussions to prevent interruptions and rabbit trails.
  • Book studies. Picking a practical book to read and discuss can be an excellent way to facilitate a support group meeting. Here are a few to consider:
  • Expert presentations, videos, local events, etc…. There are all sorts of possibilities, so be creative and engage your attendees for ideas.

Find parents to invite

If you’re just getting started you may not know other parents to invite. Rest assured, there are many parents in the same position as you are – and most also feel completely alone. Here’s some ways to connect:

  • Join online support groups and write a post asking who else is in your city. The two groups I like to recommend and am most active in are Attach Families Support Group and The Underground World of RAD
  • Provide information about your group to providers you work with: therapists, exceptional children teachers, pediatricians, the agency you foster/adopted through, and others.
  • Attach Families is working to create an international directory of support groups. Here’s a flyer you can reproduce to handout and please be sure to let them know about your group.

Remember, small is good – a turn out of 3-4 parents is a wonderful start. If your group becomes large – regularly more than 10 people – consider breaking into two groups by geography or date/time.

A few thoughts on logistics

  • Use an RSVP system like the free version of SignUp Genius. This can be helpful because it’s easily shared on social media.
  • Start a Facebook Group to communicate with local parents about your group and share information on other local events and resources.
  • Use name tags and provide light snacks and drinks. Be sure to have a couple boxes of tissues on hand.
  • If you are a leader and need advice on handling specific situations please reach out to Attach Families.

I’d love to support you too! If you’d like copies of my book Reactive Attachment Disorder: The Essential Guide for Parents to provide free of charge to members of your support group please contact me.

An Introduction to Developmental Trauma

Also published by The Mighty (upcoming)

Nearly half of America’s children are exposed to one or more adverse childhood experiences (ACES). ACES include being neglected or abused, witnessing domestic violence, having a substance addicted or incarcerated family member, and being forcibly separated from a primary caregiver.

Children with a single ACE often have positive long-term outcomes. However, as ACES begin piling up, they can have very serious long-term impacts. This is most common among kids who have spent time in foster care and in high-risk families.

Chronic ACES that occur before a child reaches the age of five can cause “developmental trauma,” a term coined by leading expert and researcher Bessel van der Kolk.

Trauma and Brain Development

Developmental Psychopathy, the study of how trauma impacts the development of the mind and brain, is an emerging field. What we do know is the impact of trauma depends on what stage of brain development the child is in when they experience the trauma.

For example, if a child experiences chronic trauma at six months this is the peak of primitive brain development. Limbic brain development is underway and the cortical brain is in the beginning stages. Chronic abuse or neglect at this time has the potential to affect the primitive brain functions including coordination and arousal.

In addition, because the brain develops like sequential building blocks, any impairment of the primitive brain may cause the limbic and cortical brain to not develop normally. In this way, trauma can cause a devastating domino effect.

It’s important to understand developmental trauma is a brain injury. It’s caused by chronic trauma endured in the first five years of life when the developing brain is most vulnerable.

Diagnosing the effects of Developmental Trauma

Unfortunately, there’s no single diagnosis in the DSM-5 (the manual used by clinicians to diagnose mental illness) that covers all the symptoms of developmental trauma. For this reason, kids are often given several different, seemingly unrelated diagnoses.

A few of the most common are:

Attention Deficit Disorder (ADHD)
• Post-Traumatic Stress Disorder (PTSD)
• Reactive Attachment Disorder (RAD)
• Sensory Processing Disorder
• Anxiety disorders
• Learning Disabilities
• Developmental Delays
• Oppositional Defiant Disorder (ODD)

Visualize each of these diagnosis as their own umbrella with the associated symptoms beneath. Kids with developmental trauma are often balancing two, three, or more of these umbrellas. It’s not uncommon for a child to be diagnosed with ADHD, PTSD, RAD, and ODD – or any number of other combinations.

Unfortunately, this diagnostic method is a disservice to children who have developmental trauma.

Let’s take ADHD as an example. The ADHD diagnosis is for kids who have persistent symptoms of inattentiveness, hyperactivity, impulsivity that manifest in more than one domain, for example both school and home. ADHD is caused by a, often hereditary, chemical imbalance. Stimulant medications work because they increase certain chemicals in the brain.

Kids with developmental trauma may also be inattentive, hyperactive, and impulsive. However, the symptoms are not caused by a chemical imbalance as they are with ADHD. They are caused by underdeveloped and impaired brain functions or an over-sensitive fight-flight-freeze response. Stimulant medications can exacerbate other symptoms of developmental trauma.

Unfortunately, ADHD is not the only insufficient diagnosis commonly given to kids with developmental trauma. In many cases this can result in a child receiving ineffective treatment. Worse still, these diagnoses may mask the real issue and it will go untreated.

Developmental Trauma Disorder

To better serve children with developmental trauma, Kolk has proposed adding a new diagnosis to the DSM called Developmental Trauma Disorder (DTD). The new diagnostic criteria requires exposure to chronic trauma before the age of 5. This diagnosis would fully encompass the symptoms of developmental trauma bringing them under one umbrella.

The DTD diagnosis would enable clinicians to more accurately diagnose developmental trauma. In addition, comprehensive treatments for DTD could be developed. This an area of neuroscience Dr. Bruce Perry is pioneering with his Neuro Sequential Model of Therapeutics. His approach includes mapping of underdeveloped brain functionality and a process to stimulate healing in the order of natural brain development.

Largely due to political and financial forces, the DTD diagnosis was not included in the latest version of the DSM. Advocates are working to have it included in the next revision which is several years away. In the meantime, parents must know how to successfully navigate the current diagnoses to get their child proper treatment.

Getting your child the best care

Because DTD is not in the DSM, it is not an official diagnosis and not covered by health insurance. Until this changes your child will be given other diagnoses to fully describe his or her symptoms.

Here’s what you can do to ensure the best treatment:

  1. Early intervention is key so seek professional help as soon as you recognize there may be a problem or become aware of your child’s trauma history.
  2. Go ahead and accept the alphabet soup of diagnoses. These are essential to get health insurance coverage for the very expensive treatments and therapies your child may need.
  3. Get a psychological evaluation from a psychiatrist. If you know your child has a history of trauma, don’t settle for an ADHD diagnosis from your pediatrician. Ask for a referral to get a full evaluation.
  4. See a psychiatrist for medication management. For your convenience, most pediatricians will continue refilling prescriptions once the patient is stabilized. However, get started on the right foot with a psychiatrist.
  5. Seek out therapists and other practitioners who have experience working with traumatized children.

As your child’s primary advocate, it’s critical for you to keep the entire team focused on the trauma underlying his or her symptoms. Learn all you can about developmental trauma and keep it at the forefront when you discuss your child’s treatment plan with mental health professionals, educators, therapists, and pediatricians. These steps will ensure your child gets the best treatment available.