What would you want from a support group?

[carrieq]

I am the mother to an 8 year old son with autism.  Some other local moms and myself (including our OT who has a son with autism) have started a support group for families of those with special needs.  Our main goal is a non-profit to bring resources and activities to our community for our children.  We aren't strictly about autism, but all special needs.  We are trying to iron out exactly what our support group meetings should look like.  I'm looking for topic ideas.  We recently had the intermediate school special ed teacher walk us through the parts of an IEP.  We would like to have parents share their child's story and teach us more about their diagnoses.  We plan to go on local outings as well.  What sort of topics would you like to see covered in a support group?  Any ideas or suggestions are appreciated.  

[auntie]

There was a pretty good ASD support group where I live when my son was initially diagnosed in 2000. This was way back before Autism Speaks, the blue light nonsense and the increase of ASD dxs. Later there was one specific to Aspergers which was even better for my needs.

They both kept it to ASD. The former tended to have kids who were more impaired and enrolled in self contained classrooms. They had an evening meeting monthly through the school year with formalized topic and a looser meetup during the summer for the parents to just visit and have dinner together at a local restaurant. Some topics they brought speakers in to cover were- Advocating at school under IDEA, medical concerns, estate planning, etc. But the best part was that they offered a Sibshop for school aged siblings to give them a safe space with a professional facilitator to talk about being the sibling of a kid on spectrum. This was back when ASD was thought to be a rare condition. They did offer a few outings which never were a good fit for me. One thing I liked was that this group was never a race to the bottom.


They have since morphed into a support group for parents of adult children with ASD and still do a lot of socializing. They have a private facebook page for sharing resources because there is so little out there for adults.

[waverly]

Honestly with after school activities I have a hard time making it to in person events. Either it has to be on my radar as I really need to go to this to help DS or I don’t go. I’ve only been to one in two years and they are not super well attended.

I found it helpful to have a person I could talk to via email or phone for specific situations. It pretty formal with intake and outtake a set amount of interactions per month and a set time period. I mean those can be flexible but I think it’s set up that way so there are parameters in case they get someone really needy who needs a lot of hand holding then there are limits.

[miranda]

We have a good one in our district. It is autism specific. We meet in the evenings once a month. The organizers post the topic in advance, so I can gauge whether I want to attend. One industrious mom who doesn't work during the day has tried to get together an alternate group during the day with some of the same speakers. Some of the recent topics have been: disability waivered services at the state level (with a representative from our state agency); employing individuals with autism (with a parent whose company has an ASD hiring policy); representatives from the local "life" college for persons with SN; a county rep who came to speak about applying for TEFRA (Medicaid with copay); rep from our state ASD nonprofit who spoke about a new ASD adult mentorship program they are starting with area high schools; and, the big one, a Q and A with two different autistic adults, both of which have children. I missed that one but apparently parents found it incredibly illuminating.


One thing they do that is very helpful is they have an item that is passed around when someone speaks. This makes sure no one person is dominating the conversation. There's always one mom who really wants to vent, so it gives her the opportunity to talk, but then someone will gently remind the person to move the rock along (or whatever they are using).  We also meet in a community room at a local café. There is beer, wine, coffee, and food, but they also remind everyone that no one is under any obligation to purchase anything ('cause it ain't cheap). Still, I think having a beer/wine option keeps it casual and friendly. 


I'm still limping along trying to get a parent group going at our elementary school. It is open to all special needs. The school really wants us to meet AT the school, which I do understand. There are a lot of immigrant families in the ASD program who are more comfortable meeting at the school. I try to bring coffee once in awhile, but with only 25 families with IEPs in the school our turnout is usually quite light (usually just me and one or two other moms). Still, we enjoy just asking what one another is up to, community resources we find useful, tutors, camps, etc. 

[akafred]

I'm not part of a special needs support group, but I was part of an adoption support group which really is more of a special needs group because those are the people seeking support. The special needs were more trauma/anxiety based vs ASD or ADHD, though many kids had multiple diagnoses. This was run by an adoption agency as part of a state grant, and the format was dinner for 1/2 hour (usually parents and kids together, not always), followed by an hour of the parents separated while the kids played with social workers overseeing. In the parents group, we talked for a few minutes, introductions followed by "how has your month been" kind of thing, and if there was nothing that kind of took dominance (like a family in crisis really needing support), we would watch some parenting videos and chat. Most of the videos were based on the Empowered To Connect series by Dr. Karyn Purvis, a curriculum for parenting "kids from hard places" that really speaks to trauma-informed parenting. It might be a video about "shark music" followed by conversation about the same. It was mostly good.

My company had an "Alliance of Parents" group that is introducing "small groups" based on topics. I joined 4: Sandwich Generation, Elementary Age, Adoption, and Special Needs, but none have met yet. I was asked to lead the Adoption group, so I am actively gathering info on how to lead such a group. I did do a survey asking members for some info about their families (type of adoption, age kids were at time of adoption, etc), with topics for consideration. The responses have been revealing.