Disappointed in support group I attended last night

Post Reply New Topic

I attended a support group for parents for children newly diagnosed with autism spectrum disorder and unfortunately it was not very helpful. There were 10 families and all had 3 or 4 year old ASD children and one was 6 with aspergers. (My aspie daughter is 13) They were also all married and seemed to have so much family suport and lots of friends who would babysit and get together.

When I said I was tired of being a single parent since my twin girls were 8 months olds, someone asked me "Well aren't your children older?" like somehow parenting alone for 13 years just got better now that they are teens. Funny, I thought it would too when my children were younger.

I found myself really jealous that everyone had husbands to count on and they seemed to all have good marriages where the guy would really help with caring for the children and the household chores. Of course I know that I could be totally wrong, but it felt that way from what they were saying.

I realize that other people in my position may not have even attended a support group because they would be too busy caring for their kids.

The support group is about coping and creating your natural support group and I have always had parents and family who are very uninvolved in my life and I rarely see them. I don't even have any friends, except for acquaintances at work. Really all I have is my boyfriend and I worry I am too much of a burden to him now because I am having such a hard time with the diagnosis and coming to terms with it.

I was so hopeful about finally getting help for myself and really it has only made me feel worse.

I am sorry that it was not a good fit for you. I do think you probably are right about why. I think it is harder for single parents to do the support group meeting thing. I am wondering if the lack of parents with older kids is b/c these types of groups end up being unhelpful and people drop out as their kids age b/c it is not worth the time commitment. I think there is also a supposition that if you get diagnosed later you must not have so many problems, which is not necessarily so true, as you know. I am sorry you were disappointed.

We have never done the support group thing b/c I am too aspie to tolerate it and it would be disruptive to my "rhythms." A lot of parents of auties and aspies are also on the spectrum or broader autistic phenotype and not exactly social butterflies or into organizing and starting or attending groups. So there might be less parent-organized resources than for other things, I do not know.

Edited because I evidently forgot to put "not" as I was typing. I need more sleep.

ASD mommy, I didn't even think about a lot of the parents having ASD themselves, so of course they might not choose to attend. Everyone seemed very social and nice last night, but I just don't know whether to attend the next 3 sessions. It is somewhere to vent for a couple hours for a few weeks, so maybe it will be helpful in the long run. But I feel so disappointed about the whole thing, I just don't know.

I also didn't like how it was structured. It seems when we were in partners or smaller groups and got to talk, we all were feeling really good. Then the two social workers would get us on track by showing us pictures and asking how we felt and stuff like that and many would clam up. I am very out going, so I ended up speaking a lot about my situation and then I felt guilty for talking too much.

It was supposed to be a source of support, but really it made me have trouble sleeping as I ruminated about how little support I do have.

Sad to say it, but in a few years, statistically speaking, many of these people will no longer have loving marriages and families/friends who are willing to help.

I think also that earlier on, people are more invested in "saving face" and presenting the right image. The strong super family who can overcome any and all obstacles. To me, it kind of reminds me of facebook. So many people seem to have perfect lives on facebook, when in reality, their lives are no better than mine, and sometimes worse. As time goes on, your ability to play that game goes way down.

I have also found that parenting older children is significantly different than parenting younger ones. And oftentimes, parents of younger children somehow think that their experience is somehow different than those who have truly "been there/done that." I think because of this, groups that contain parents of vastly differing age groups are difficult, and I imagine that is true for both ASD parents and NT parents.

I also thought life would get easier as my kids got older. The truth is, in some regards it has. I don't have to change diapers, feed, or watch my kids every second of the day. But the flip side of that is that I have concerns and worries that I never had to even consider when my kids were younger. All you really do is trade one set of challenges in for another. Parents of young kids cannot possibly understand this because they have not yet experienced it. It is kind of the same as how people without kids cannot possibly understand what it is like to have them. You can try to imagine, but you cannot understand.

I have been married to my kids' dad for more than 20 years. We have been married, separated, and now trying to find a way to peacefully cohabitate. But I have always been pretty much a single parent. It is not that he is neglectful. He just doesn't parent. Partly because he works a lot and partly because I don't know that he really knows how. I have no family in the area. Few friends, and no friends that I spend time with or can turn to for help. So I totally get where you are coming from. At some point along the way, I decided inside that I don't really need help or support. And over time, it seems that that has become largely true. But it might be the shadow aspie in me coming out, because I probably do not need others as much as some people do to begin with.

I get all the support I need right here. To know that I can post something and have someone else understand exactly what I mean, means more than anyone outside of a group like this can probably appreciate. The only drawback is that this group cannot come and watch my kids when I feel like I need a break, or when I feel sick. But other than that, this is my support group.

I am so sorry that the other parents didn't have the instincts to see what you needed and provide it. It is tough to feel like you are alone, and I don't think someone has to be in your exact situation to realize how deep that feeling runs for you. Compassion should have led someone to at least want to brainstorm or think creatively for you.

((((((((((((((((((((((((((((((((((giant hugs))))))))))))))))))))))))))))))))))))) sorry there isn't more I can do.

In this together, thanks so much for your understanding words - you would have been great to have at the support group last night! I am wondering if I am better off with no support too, but I am having such a hard time coping now, I thought I should get all the help I need. I just didn't expect it to make me feel more hopeless. And I hate feeling this way because I am usually very optimistic and happy with whatever comes my way. Now I get whole days of depression and feeling like I can't function. I feel sad, weepy, overwhelmed and panicky at the future. I have a great boyfriend of almost two years which is such a great thing after being single so long, but I worry about driving him away with all my despair and neediness. I also was hoping to have an empty nest in the next 6 years or so, but with an ASD child, when is that going to happen? Will I date my boyfriend forever?

DW a mom - thanks for your kind words - I don't think the social workers would have allowed any brainstorming. They had this silly agenda they had to follow and we had to remain on topic. They even told us how they thought we would feel before and after a diagnosis - who cares if they were right that we might feel frustrated, confused or worried? It was so ridiculous. The giant hugs were must appreciated.

triplemoon, where do you live?

I don't know anything about support groups, but maybe there is something available with a different format, near you? I do not know why they think such a rigid structure would be therapeutic. Is it a 4 session class or is it ongoing? If is a class, that might explain the structure. It could also be a part of a research project and maybe they are testing methodology and that could be a reason for the rigidity.

I would guess something that is more of an ongoing, informal thing would be better where you have a therapist as kind of a "guide" who helps as more of a moderator or something rather than acting as a teacher with a schedule would be a better fit.

(I have seen this format on TV and so can not verify it exists in real life, but it would make sense to me that it would as people would be entering a group at various stages of knowledge/experience and having a set class atmosphere seems silly to me.)

Edited to add: If you find it depressing and unhelpful, if it is not "against the rules" maybe go one more time and get email addresses of people you would like to talk to or see again.

mikassyna - I live in Canada

ASD mommy - They won't let us get email addresses until we attend all 4 sessions. I have contacted another support group that deals with only aspergers and asked if they have parents with a teen or who are single parents.

I wasn't going to join anything because I find my life busy enough working full time and parenting full time, but I thought it would be helpful. It is 4 sessions to help you come to terms with the diagnosis, but I don't see this actually helping me. I would likely have preferred watching a movie than spending 4 hours rushing around to get to this meeting by bus and then come home.

Sometimes I think I just need to go see a shrink, but I don't have the money for that and focusing on my problems just seems to magnify them.

An ongoing informal support group does sound better and so I will see if the aspergers group here is a better fit. It is only once a week though. I am so glad I found all of the supportive people on Wrong Planet because I would feel so lost without it.

I wanted to meet people in person, so my daughter could meet a fellow aspie. Maybe it will happen eventually.

I just wish I could get rid of the doom and gloom feelings that have been plaguing me lately. Maybe once spring comes, hope will come again. These awfully long winters don't help one to feel cheeful.

funny things about NTs .... Aspies are not the only ones who don't think before they speak.

Rolling Panda Art - what are you referring to?

I understand the format, now. The class has a particular purpose with a very limited scope and that is why they are making you all stay on topic. Blech!

I understand why you want the in-person contacts. The once-a-week thing sounds like a much better possibility.

I wish I could help you with the emotional turmoil. There is a lot about other people that can make a person feel awful. We don't tell family about the diagnosis b/c we know they would be unsupportive and it would cause more problems as opposed to getting us support. We are basically alone. We are use to it, but aspie qualities make that easier.

I think it will get better for you over time, as you get use to it. Do they have respite resources or maybe sliding-scale or free therapy? Your county health department might know of something.

ASD mommy - I meant once a month, so I am not sure that this will be enough, but maybe it will. Just having you to listen helps with my emotional turmoil. I will have to apply for funding for ASD respite and all sorts of other stuff on my to do list when it comes to my daughter. I guess I waited 13 years to find out what made my daughter tick and then now that I have - I had no idea how many decisions/choices and emotions I would have about it. It just seems to affect every aspect of my life now - like the first few years that I was a single mom and getting used to it.

We all need to take time to fill our own buckets and when time is the one thing you have the least of, you have to be pretty choosy about how you spend it. If the support group isn't helping you out, then it may not be worth your time. Even 4 years into our diagnosis, I feel exhausted, overwhelmed and panicky sometimes too. I have learned that those feelings are worst when I am not taking care of myself. Consider some other options like making time to exercise regularly or take a class at your local community college or adult ed center if any are available. For me its not so much about attending classes or groups directly related to having a kid with autism, it is about making some time to do something I enjoy.

This site is a really great place too. I haven't been around much lately but it has helped me so much over the past couple of years just to know that there are others out there struggling with the same sh*& I am.

I've seen a similar thing happen in support groups run by social workers/family therapists -- they seem to feel a need to be the authority dispensing advice and in charge of the meeting, when all I want is a chance to dish with other moms whose kids are like mine. The host of a local monthly coffee talk even expressed surprise that the group was seeing "regulars" who came back more than once.

You might ask the organizer (and the other participants!) if she knows of any local autism groups on yahoo, facebook, or meetup. Then on that site post a query asking if there are any parents of teenage Aspies who would be willing to share some tips about local services, dealing with the school, etc.

Bombaloo - I do try to take time for myself by doing yoga daily, reading and watching movies. I am relieved to hear that you too feel the same kinds of feelings at times because when I get like this I feel it isn't normal and I should just get over it. You are right that it is when I am not taking care of myself that I feel the worst - usually when I am not sleeping good and not getting any "me" time. I was able to see my boyfriend last night and have a few hours together, so I am feeling so much better today. I do have to be choosy about how to spend time because there just isn't very much of it. Sometimes I feel the only me time is reading on the bus for half an hour each way to work and back.

Zette - I just wanted a chance to speak to other parents too - not have the social workers tell us how we are supposed to feel. They also said they would help us, but really what do they really know about our situation?