Where do you go for support?

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Since my son's AS diagnosis last October its been a lonely road for me. We have had many friends distance themselves or disappear altogether once they found out. My female friends dont understand at all and I think it makes them uncomfortable because if I bring it up, the subject is changed quickly. My husband doesnt understand a lot of it, I do all the research, doctor appointments, etc so talking to him is spent mostly educating. There's family but they only understand so much too. I really dont know anyone who can relate. I know only 2 other moms of AS kids but one is very busy and the other I only just met. Ive looked for local support groups and there arent any near me. So, who do you talk to about all of this?

Hi Aimless-

Well, I guess the main place I come to is Wrong Planet! I don't know what I would do if I hadn't found it! My son has been diagnosed for over 2 yrs now. We had concerns from the time he was 1, so I did a lot of talking with my mom and my sister during that time. They have been wonderful, and my mom totally gets it, and loves her grandson and will listen as much as I want to talk. However, there are times that I just feel that I don't want to burden her or cause her undue worry, so I just don't want to pick up the phone and call her every day. I guess for me, talking about AS is my therapy, and I don't want to drive my family crazy talking about it all the time!

As far as my husband, well, let's just say, we are just now getting to have a better line of communication regarding all of this. In the beginning, I felt very alone, because I didn't think he believed that our son had autism, that he just thought I was making it all up in my head. So, like you, I have been the one doing all of the research, and I just relate to him the parts that seem pertinent to our son. For the longest time, I think he thought that our son would just "grow out of " his behaviors. He is now beginning to see that this is not happening. It has been a process, but we are getting there. I think men just have a different way of handling things.

With friends, I have a few good friends that have been there and have talked with me and listened very well, but again, they do not totally understand what we are going through since their own children are typical children and it would be hard if you are not going through it yourself. I am trying to get to the point that I don't just talk about it all the time. I don't want to drive away the good friends that I do have!

I have met a few mom's of children with AS that I have connected with, but like you said, many of them are really busy, and I understand that. Especially if they have other children. I have tried to get my son together with their kids, and since he doesn't play, then it just doesn't seem to work out. I really just try to keep those lines of communication open, but I just don't rely on that for my support.

Support groups----I really was hesitant to join one because I thought that I would just go and sit and cry and get more upset listening to others stories. If I am on Wrong Planet, I can do that, and no one sees me! LOL! There is one support group that a speech therapist at my son's school heads up, and I attend that occasionally.

One thing that I have found that was especially helpful to me has been reading books about other families struggles with autism. That has been very helpful to me.

Well, I hope this helps, and please keep coming back to WP!! !

It is very lonely at the beginning. I found support in a parents' forum that is no longer up. I hope you find it here.

I hope this is o.k. to share, but I run support-type groups via tele-conference (you call a number and get connected to a bunch of other people). Since I've been parenting my neurodivergent children for over a decade, I've learned a lot of tips and techniques for coping which I share with other parents. You can find my group via my website (see signature below).

This reminds me-when my daughter was first diagnosd I went to support group and cried the whole time. I never went back.

WP is my support group and I don't feel the need to cry so much anymore.

My family somewhat gets it but I really have no one to talk to either. I lost a pretty good friend (well she must not have been that good) after the diagnosis because I talked about it incessantly. I have a therapist I will go to occassionally if I really need to work something out. I saw him constantly when I was going through the diagnostic period.

Sorry I don't have better leads for you. We do what we can and unfortunately bear a huge burden most of the time. Someone here suggested journaling and I have found that tremendously helpful.

Before we moved, I talked almost daily with a friend whose daughter, my older son's age, has Asperger's. She and my little guy paralleled so much. Both her daughter and my son did tae kwon do together, so it was easy and helpful. Now, after the move, I have her support and ideas via Facebook - as well as a couple other friends with kids on the spectrum.

And, here and I suspect, as we get used to this town, through my new friends. Another boy in H's class has autism, so we've already connected a little bit.

My husband is very supportive (now), but my psychiatrist/neurologist mother in law who lives with us is only NOW beginning to come on board with support.

I talk here. That is probably 90% of it. In real life, I mention it, but I don't really talk about it; they don't know this road, and they have little to offer. So, I state it as a fact, and move onto to some other topic of discussion. Occasionally I'll get someone really interested in letting me talk about it, and if they've opened that gate I'll walk through it, but that is fairly rare. I think I'm kind of a closed off person to begin with, in many ways, when it comes to the really personal things, so it isn't natural for me to reach out further. I'm blunt and flat out with the outlines of life - "my son is AS," but not with details. And, well ... I figure the local support groups are for the families with more severely affected children, and I don't know what to talk about with them. They likely to be on all sorts of paths that I don't approve of, but I don't want to tell them what path to take when I've got a son I can tell will be just fine when he grows up, and they don't. The families dealing with AS at the level we are aren't that common, and many of them aren't making a big deal out of it or looking for support groups, either.

Although, I guess I do know 3 of them ... funny, how we've not made a huge effort to stay connected over it. One is a full AS family, parents and kids, so beyond having shared that information with me when I was in the diagnosis process, it isn't natural to her to want to commiserate with other parents. Another I did use to talk fairly frequently with, when her son was still at the same school as mine, and we've compared some notes over the years, but we've now each got our kids on solid but different paths, and the opportunity isn't really there. The third will call me if there is a specific educational issue I might have some information on but, otherwise, her son is well set on his path, and also at a different school. So much of this ends up between parent and unique child; after the first few years, there isn't that much to share. When there is, you need a bigger pool than 3 families to get the right brainstorming going.

Posting this makes me realize I'm not really a commiserate person, either. The point of talking about it, for me, is to share ideas and maybe connect a little socially, but mostly to get help or give help. That is faster and easier here.

I guess I do my more immediate venting indirectly, now that I'm thinking more about it. When you can't share with someone on exactly the same path, then you make a more generalized vent. I have done a little general venting with friends or family: "I'm really frustrated about the grading process at School Z right now!" Stated in that kind of generalized fashion, almost anyone can give a nice supportive statement or two. You may have to be willing to hear their vent that is probably totally opposite of how you would want things changed , but that can put some perspective back in life, too.

But, overall ...

I come here.

Yes, you offered that information perfectly appropriately (link in sig, responding to a related question instead of starting a new thread, being open about your connection), and it sounds lovely.

Most of my support also comes online, whether here or other online (more local) groups. My family doesn't "get it" at all. When my son was diagnosed, my parents (my mother in particular) seemed to think that it would resolve within a relatively short period of time. Despite my explanation that this was a lifelong neurological difference, there was this certainty that it would all get "fixed." My siblings just ignore the whole thing, basically. They view it as "one more thing" that's weird about my family. My daughter had/has some "issues" of a different sort, and they didn't have a lot of understanding or patience with her, either. They tend to do a combination of normalizing everything and then acting like everything could be "fixed" with proper parenting, or that I am seeing problems where there aren't really any. So there's no real support from the family. Since they don't live locally, it doesn't matter very much, but if I think about it, it hurts, so I tend not to think about it. Sigh.

My support tends to come from other families with kids with special needs - they don't have to be families with kids on the spectrum; as long as a family is "outside the norm," it often works. Whether it's autism, learning differences, hearing deficits, emotional needs, whatever ... when you're "outside," you share a LOT!! The stresses are different, you feel isolated, the fathers are often no less involved than fathers of typical fathers, but you need them to be more involved. All of it makes for a very different way of making connections.

Hang in there - you've taken your first steps. Keep walking!

You know it is funny, in the beginning, I would start to tear up if I would talk about it, but if I was at the park or somewhere with my son, I would sometimes talk to complete strangers about his diagnosis. I know it sounds strange, but for some reason, it helped me practice talking about it with people that I had no emotional investment in. Over time, I have become more comfortable talking about it, and I don't get teary eyed anymore, but I also don't feel the need to talk about it so much anymore.

DW I appreciate that you give so much of your time here on WP. Clearly, your son is on a good track, and you probably don't need as much advice as some of us who are just beginning the journey. But, I think it is commendable that you are so giving of your advice and experience.

Thank you. I feel like I've been misfiring a lot lately, so your statement is well timed.

We are always heading into another curve, however, and it has been great to read so many issues just before they hit us, and to know what people have done. Having that has really helped, and I'm just realizing I haven't found an effective way to let those posters know how something they talked about last year actually got to be used by me to be proactive this year; I owe them!

I am finding I don't remember as much about some of the earlier stages, however, so I've slowed down on responding to some of those threads; my memories just aren't certain enough.

It's OK, you're right out in front of me, and believe me it helps! Amazing how myopic parenting a special needs child is, right? DS was a colicky baby, something I get asked about by other colicky baby parents...and I don't remember that year almost at all. I have no idea how I got through other than gritting my teeth.

Aimless1, we ALL know how you feel. And it does get better, if you seek out your village.

Is there a parent support group you can check out in your area? While you're looking, I would also strongly recommend you check out the many excellent parent blogs on Aspergers and SPD. They were a LIFE SAVER for me during the first few months of my son's diagnosis. If you are looking for some good ones, you can check out my blog - I have a list of resources on my sidebar.

I actually just wrote a post on exactly what you are talking about, which I describe as the need for that Village everyone keeps talking about (It takes a village to raise a child). If you'd like to read it, you can find it (and lots of other parents who form my virtual village) here: http://www.welcome-to-normal.com/2010/1 ... llage.html

Awwww, Caitlin - not nice to make a momma cry at the office.

Everyone here should read that post - beautiful!

Here. I get most of my support here.
I find that if I use this space to vent/rant/kvetch, then I have the emotional reserves to calmly and cooly explain my daughters needs to people face to face.

I talk to the kitties in our house--they get it and always know when I feel bad---seriously I do; its hard to talk about a kid with AS without sounding like whining or bringing people down;

This has been great for me to read. Its a bit of an issue for me, support, as I am a single parent in another country from my original family. I also have told very few people about my daughter being AS because of general ignorance about the subject I've felt the label wouldnt serve her well particularly. As she grows older, it will be up to her who she shares it with. (Though I feel it's been definitely helpful to her as a 12 year old knowing it). So not much support, I did tell two other families with AS kids , but we dont have much contact, the one is v. busy and the other left the area.
My mother is supportive via email, my brother and sister both have extrovert high achieving nt kids which sometimes makes me feel a bit dark and cross in my weaker moments, though of course I wouldnt swop my wonderful and original thinking girl for anything.
I have found wp incredibly helpful, I'm always on it, and slowly getting to know the various contributors , DW, you are amazing!! Your advice so spot on, dont ever doubt yourself.
WP has really helped me just gain a slow acceptance and growing appreciation for my daughter s unusualness, and also to realise that with my acceptance and general lightening up (as in lighten up already!) over the different issues, she has become happier and things have become easier .
So I'm really glad I found it, its helped me through many difficult moments. Long may it continue.