We all need some support once in a while


#1

Hello, Kidsister here with a bit of an odd topic. I wasn’t sure where to put this, so I chose my normal corner of the forum.

If it’s Ok, I would like to post a little bit about Support groups. I hope there is no cringing and recalling bad memories of drafty rooms, rancid coffee and stray people just waiting for the bus. I’ve read quite a few posts here by people who have not had very positive experiences with support groups.

I have to admit, I’ve had a few bad experiences too. But I’ve also had some good. I was pulled to many a group before I was part of a sibling support group that was facilitated by Swedish Medical. It was recommended to me by one of my oldest brother’s doctors.
(considering the source of the recommendation is a good tip)

At the time, it was a lifesaver. It got me through many years of turmoil and was an amazing “normalizing” part of my week. I was no longer the girl with the turbulent family or the life stories that no one could relate to. I was in a room of 11- 17 other teens that were going through the same exact thing I was.

My wild rides with my oldest brother, my deepest sorrows, and my strangest moments were all “normal” to this entire room of people. Sometimes we didn’t even talk about Sz at all. Sometimes we just talked about school bullies, how to stay on top of homework in a house that is fraying at the edges or how to broaden our support network.

I learned so much from that group. I learned what to do in times of crisis, how to not take negative symptoms personally, and how to help my oldest brother in a way that made a positive difference. The support group helped me understand what I couldn’t even fathom. It kept Sz from destroying my friendship with my amazing oldest brother.

Life moved on and so did I; and I have lost touch with my support group. Well, nearly a year later, and the youngest brother has come home with a Bipolar 1 label and I’m trying to reconnect, learn about and get to know this man again. Just like last time, I have more questions than answers. I am aching to hear someone say, “OH, I’ve seen that before, yes, he can overcome that.” and “don’t take his depression personally, he’s not depressed AT you”

I’m on the hunt for a support group again. But I’m not starting from square one like I was last time.

I just wanted to share a few things that I thought were important when looking for a support group.

When you are seeking a support group, I would start by asking “Why am I going?”

Are you going to vent, discuss, open up and finally get it off your chest, while embracing others going through the same thing? Or are you quickly trying to find the facts, the resources, and the professional connections? I think my family has used both reasons depending on the situation. Sometimes you need the facts, quickly. Other times, you need a good laugh and a reassuring hug. (along with some stale coffee)

Once you figure out why you’re going, next would be what to look for:
First- Is it organized and consistent?
If you feel like you’re trying to find the secret password, and no one has contacted you, and the meeting might be held on the second Tuesday of every other month unless it’s raining, then this is not well organized group. You want a group that responds to contact promptly and is not afraid to answer some basic questions about itself.

Second- Does it have a confidentiality policy or good boundaries?
It should. Is there a general amount of respect paid towards confidentiality? Do people respect a story that is not theirs to tell? Do you hear a lot of gossip and reference to other members situations too early in the game. Example- “That’s Pat over there, he’s bipolar with a three divorces under his belt, if he keeps his jacket on all night, it’s a sure sign he’s cutting again.” If stuff like that is happening, run away. People have their own story to tell. One up-man ship and gossip do not make for a healthy, open support group.
Also, look for balance. It’s good to vent, it feels great to let off steam, but if that’s all the group is; then it’s not a support group. It’s a gripe session and it’s not always healthy.

Third-Does it have good Leadership?
A good leader is key to the dynamic of the group. Is the person leading the group equipped with up-to-date and accurate information? Are they a professional or a peer? Either one is fine, but you want to know stuff like this going in. Does the leader or facilitator have a set frame work, or is it more free flow? Again, either one is fine if it works for you, but knowing this going in will help you prepare for what your walking into.

My personal little criteria: How well does it integrate or welcome new members? Are new members banned from speaking or forced to spill their life story right then and there? Are you greeted with a “Hello how are you?” Or are you greeted with, “Who are you and why are you here?”

A good leader that lets a new member feel included and yet warm up at their own pace is a good sign for me.

Wish me luck as I once again go on the hunt for a support group.

Thank you for letting me post.


#2

Good info. Good luck.


#3

“Who are you and why are you here”

That sure sounds familiar. :eyes:

Good luck finding a support group.


#4

@kidsister Great info. Best of luck finding a support group.


#5

Excellent post @kidsister!I would like to find a support group for myself or my son after this summer.We live in such a small town that everything is over an hour away.Would you or anyone else have any suggestions on how to get my son some socialization?We are going to have to homeschool this year.I think some type of teen mental illness support group would be great for him.My dilemma is that he often still believes he has nothing wrong with him.The pdoc+therapist don’t want to tell him about sz yet.I know he would respond to others that are going thru the same issues,but it’s difficult because we all see the elephant in the room and pretend it doesn’t exist(around him).


#6

i’ve never had one and neither has any of my family


#7

i hope you find a good support group.
take care


#8

Great info and post @kidsister!

@btrfly36. My son refuses to participate in groups and outings through the program that he is in. I think being around others in the same situation would be great however he doesn’t think so since he isn’t like them :wink: I have spent a little time trying to find a gym with a punching bag in our area since this is something that he is into and would enjoy. I can’t find one :frowning: Perhaps look for things non-sz related. Now that summer is here, this year I have started taking us for picnics on the weekends with no rain. My son takes walks through the trails at the parks.


#9

Thanks BarbieBF!You always have such wonderful ideas!I have had the most luck when I can think out-of-the-box for solutions.Showers are such an issue for many.I finally suggested that he let me wash his hair sitting on edge of tub+ this has been going well.He is so young still,but I’ve noticed him verbalizing more paranoid thoughts.A support group may just not be the right road to take at this time.I do agree that nature(for many people),seems to help heal/calm the spirit.@kidsister-please keep us posted on journey to find support!


#10

I’m glad you’ve found something that is working for both of you.

I can’t take showers either. I also wash my hair in the tub. I also take baths. Showers can get a bit over stimulating. I try them every once in a while. Still too much.


#11

Awesome post!! You always have such great posts. I really enjoy your humor that you lace in the resources. Your brothers are lucky to have you. It sounds like your family has really been through the wringer. I can’t imagine what it is like to watch a family member struggle. It seems like just when James is getting stable your other brother is struggling. I know you’ve probably considered NAMI but also by me there is a community mental health center that holds support groups. Do either of your brothers have a case manager? They would know what is in the area.

I’ve been to group therapy before which was kind of like a support group. I’m going to start their after care program which meets once a week instead of three times a week. I told my therapist I could use the extra support right now.

@btrfly36 When I was a teenager I went to partial care. Over the years I’ve been to different ones but a lot of times they’re small enough where you can do group therapy and get support from everyone and the counselor. I’ve also been to ones so big that I got lost in the crowd. They usually let you try it out for one day to see if you like it. Also when I lived in Philly I went to a place called the Attic. It was a place for teens who were LGBT. At the time I didn’t know I was bi but I went for support. It may have been a place for mentally ill LGBT teens if I remember correctly. I worked with the art therapist there and they always had something going on. Part of this illness as you know is denying it exists. Somehow the bizarre becomes fact and you don’t think there’s anything to question about it.

@BarbieBF would it be possible to buy a punching bag? That way he could get his aggression out at home whenever it strikes. Have you ever considered seeing an Occupational Therapist? When I was a teenager I saw one and used a giant peanut ball. For sensory input I would bounce on it. It really calmed me down. It’s a shame it got ruined in our basement. Now I hold my head and pace when I’m not feeling good. :sunny:


#12

I would buy him a punching bag if I could. We live in a small apartment so no room. My son does have an occupational therapist and peer support and nurse, all part of the PACT program he is in. He doesn’t want to and doesn’t think he needs their support.


#13

Great post!
Very hard to find good support groups–whatever it is you`re looking for—in some areas especially as funds are being cut as I speak.
Kidsister…I hope you find a wonderful group. Because you live in CA. I think you will have a great chance to find one


#14

Hi Bridgecomet. Surprised and kidsister live in Seattle.


#15

Oh! It sounds like they have such good support out there with groups and doctors, etc…It`s the west coast, much better than being in middle america.