Support Groups for Disabled Parents & Kids

Parent Q&A

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  • Hi BPN, we just learned that our 6 week old baby has a serious congenital brain issue. Our other two kids (ages 12 and 9.5) are neurotypical so we are not new to parenting but are brand new to parenting a child with big differences from typical. I am looking to build community with other parents that have navigated this journey and also, maybe especially, to get support for my older kids, who in the short term are dealing with parents being at the hospital with baby etc, and also with so many feelings about the sister they have been so excited for following a different path, Grateful to be able to feel so many things, and want to support my kids in feeling it all in a supported way too. Appreciate any connections you all have.

    I am so sorry to hear about your child's diagnosis, how scary for all involved! Are there online or local groups for families of children with the same diagnosis your child has received? There is a good chance that those organizations have support groups, with other parents in your situation. These groups can be a tremendous resource, as you can talk with people whose families are going through (or have gone through) something very similar to what your family is experiencing. They may also be able to point you toward other groups and resources.

    Through the Lookingglass nonprofit in Berkeley may be able to help. They serve families with disabilities, been around for decades. They can connect you to other families or a support group. TLG is located at the Ed Robert's Campus, adjacent to to the Ashby/ Berkeley Bart station.

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Archived Q&A and Reviews

  • Support Group for Spouse of Disabled Person
  • Earlier Recommendations
  • See also: Caregiver Support Groups

  • Support Group for Spouse of Disabled Person

    April 2005

    I am looking for a support group for spouses of disabled people. My spouse has degenerative back disease, and the medications he must take for pain management cause disabling cognitive side effects. We are young, and our lives are profoundly affected by this. I know it would be beneficial for me to join a support group, but I have not found one that fits our profile. Does anyone have any ideas? With gratitude, anon

    I'm assuming you have kids since you are on this list

    Try Circle of Care (Oakland/Piedmont)

    Center for Attitudinal Healing (Sausalito)

    Both have support groups for families/caretakers/kids where someone is ill. Center for Attitudinal Healing seems to have a broader mandate. I tried one of their groups (I have cancer, but other people and their spouses had varying illnesses) & it seemed helpful. My spouse attended the same group I did, and our child met with other children for a play/art therapy type group at the same time. I was too sick to go to the last meeting, but plan to attend again. I'm also going to try Circle of Care since it is local.

    Both of these groups are free, if you qualify. anon

    Earlier Recommendations

    Berkeley Parents of Special Needs Kids

    A group of parents of children with special educational needs (interpreted as inclusively as possible) in the Berkeley middle and high schools formed last year. For our first meeting this year, Clare Davies, Special Education Department Chair at BHS, will be present. We have also invited Joann Biondi, director of Special Education at the BUSD, and Sharon Pincus, BUSD Program Supervisor for middle schools and BHS, to speak to us. They'll talk about policies and programs and answer questions about whatever people's concerns are. This should be an informative and useful session for people whose children have IEPs or 504 designations, or who want to know more about the system.
    Julia Epstein sandstep AT