2024 Caregiver Support Groups
by Carla D’Imperio, PMSF Family Support Specialist.
We are pleased to share topics, dates, and registration information for our 2024 Caregiver Support Groups.
We are thrilled to continue our Caregiver Support Groups as part of our 2024 Family Support Program. We are offering five support groups topics, with additional topics possible later in the year. The Support Groups will be facilitated by Kiley Richards, LISW and Dr. Al Freedman, Ph.D.
Our 2024 Caregiver Support Group topics:
- Support Group For the Phelan-McDermid Syndrome Caregiver (general group)
- “Coping With Neuropsychiatric Episodes” Support Group
- “Coping With the Grief From the Loss of a Child” Support Group
- *NEW in 2024* Support Group For the Newly Diagnosed Phelan-McDermid Syndrome Caregiver
- *NEW in 2024* Support Group For the Phelan-McDermid Syndrome Father
Please scroll down to register!
Dad’s Group: Support Group For the Phelan-McDermid Syndrome Father
The Dad’s Group is a closed support group for fathers, male guardians, and male caregivers of individuals with Phelan-McDermid syndrome. This group will ensure that Phelan-McDermid syndrome fathers have a safe space to express their challenges, fears, and worries and begin to process their feelings of grief and trauma associated with their child’s diagnosis. Please check back for updates on the next meeting of this group.
- Tuesday, November 19th at 5pm ET
Support Group For the Phelan-McDermid Syndrome Caregiver (general group)
The Support Group For the Phelan-McDermid Syndrome Caregiver is an open group for all parents, guardians, and primary caregivers of Phelan-McDermid syndrome individuals. Participants will be able to process, understand, and cope with the mental health symptoms that can accompany the ongoing and complex trauma and loss that comes with a Phelan-McDermid syndrome diagnosis.
In response to the feedback we received from our 2023 participants, we offered the groupings by age of the Phelan-McDermid syndrome child during the month of January. The January participants overwhelmingly preferred this option, so we will continue to break the support groups out by age. Based on attendance, we will be combining into two groups, one for caregivers of children ages birth to 18 and one for caregivers of children ages 18 and up. PLEASE NOTE THE UPDATED AGE GROUPINGS BEFORE YOU REGISTER. Here are the upcoming dates:
- Caregivers of individuals ages 18 years and up — Thursday, November 21st at 8pm ET
- Caregivers of individuals from birth to age 18 years — Sunday, November 24th at 3pm ET
Please click a link below to register:
“Coping With Neuropsychiatric Episodes” Support Group
The “Coping With Neuropsychiatric Episodes” Support Group is a closed group for caregivers whose child is going through or has gone through a period of neuropsychiatric illness. Caregivers will have the opportunity to process the trauma and stress of caring for a person who is dealing with intense neuropsychiatric episodes. You can read about what those episodes can look like here if you scroll down to “Information For PMS Parents”.
Our facilitator for this group is not a Phelan-McDermid syndrome expert and it will not be a group for medical information or seeking medical/treatment advice. This group would not be a place to determine whether or not your child is dealing with neuropsychiatric illness. If you’re seeking further information about neuropsychiatric illness or require assistance in managing these conditions, please don’t hesitate to reach out to Carla D’Imperio via email.
This group will continue to meet monthly in 2024. The next meeting date will be:
- Tuesday, November 26th at 2pm ET
“Coping With the Grief From the Loss of a Child” Support Group
The “Coping With the Grief From the Loss of a Child” Support Group will be a closed group to those caregivers in our community who have lost a child or adult with Phelan-McDermid syndrome. The goal of this group is to offer a safe and supportive space for those grieving to understand, process, and cope with the immense impacts grief can have on your mental health, relationships, and overall well-being. Our ultimate goal is to meet you where you’re at and provide you with the mental health support and community connection to help you build the tools needed for grieving. Please check back for updates on the next meeting of this group.
Support Group For the Newly Diagnosed Phelan-McDermid Syndrome Caregiver
The months following a Phelan-McDermid syndrome diagnosis can be very difficult for parents and caregivers. The “Support Group For the Newly Diagnosed Phelan-McDermid Syndrome Caregiver” is is a closed support group for parents, guardians, and primary caregivers of Phelan-McDermid syndrome individuals who were diagnosed within the last twelve months. This group is intended to support our new families with the unique challenges associated with coping with a new Phelan-McDermid syndrome diagnosis. Please check back for updates on the next meeting of this group.
We are grateful for this opportunity to provide mental health support through these Caregiver Support Groups. These support groups are not individual or group therapy and are not intended to replace direct clinical services. Please note that the groups are 90-minutes long and are in English.