Support Groups for Disabled Parents & Kids

Parent Q&A

  • Child seizure support group?

    (2 replies)

    Hi parents,

    Does anyone know a of support group for parents whose children (toddlers) have seizures? My newly 2year old son has had a few and we are so fearful of everyday. I would love to see if other parents want to connect and share support/resources.

    Thanks,

    Worried mama 

    RE: Child seizure support group? ()

    Hi Blakeb

    I am so sorry you are going through this. My know 3 year old son was diagnosed with a catastrophic form of ep called Doose syndrome last year when he was 2. I am in a lot of FB communities that I can direct you to. This was all during the pandemic so no in person support groups and I did not even do any online ones. I could only survive each day....I prayyour child does not have any more seizures and this is but a blip. But feel free to reach out if you need something, advice, docs, anything. 

    Love, Tina 

    RE: Child seizure support group? ()

    Hi- I'm sorry you're going through this. My son was diagnosed with epilepsy this year at age 5. It's such a tough thing to see your kids go through, and to have to change your life around. I found some FB groups too. Also the Northern California branch of the Epilepsy Foundation has an online parent support group, as well as some in person events. Take a look here: 

    https://www.epilepsynorcal.org/support-groups/

    It's a great organization with a ton of useful info on the website. 

    Do you have good support from your doctors? We've been seeing a neurologist who's part of the UCSF epilepsy department, and have found them very helpful. It took three attempts to find the right medication for my son, but his seizures seem to be well controlled now. Consequently the stress has gone down enormously. Sending much love to you. Know you're not alone. Jackie

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 hotmail.com