Find Out How to Get Support

OK I've got a bunch of modest friends. Kudos to you Marla for posting a comment!! You get a big fat mwah from me!!!! Pass it on with pride and love (don't take the easy way like I did...)

Elissa and I have many crossover readers but I want to post this here to get additional feedback. Hop over to Elissa's post and post your comment. I'm going to quote here here for my journaling purposes:

From Managing Autism - A Personal View:

I mentioned in a post a couple of days ago, that my recent search for help and advice with Jack had people asking me where we usually turn for help and assistance when things get tough or ‘challenging’ or when we just need to talk through stuff…..

A friend of mine spoke to me recently about the troubles that she was facing with people close to her - that they were insensitive to her and her child in relation to her child’s autism. She was becoming increasingly upset with the thoughtless remarks, and was at a loss as to what to do and how to approach the issue with these people… particularly when many of the insensitivities were displayed in public and she didn’t want to cause any problems between herself and these people…..

And I posted a while ago on a topic that many parents of children with autism face - that of being judged by others, and the grief of self judgement.

So all of this has had me thinking… when times are difficult and especially challenging with our children, when people are insensitive to our needs and our children’s needs, and when we’re going through the times of self-judgement and judgement from others - where do we go for support, and who do we find support from…?

… and then how do we deal with the unsupportive influences in our lives…?

I am very fortunate to have my parents who are very supportive of Jack’s needs and our needs as a family. I also rely heavily on my blogging friends for a support network of others who are facing similar things in their lives - and who are very generous with advice and support! I visit an online forum when I can, and I do have a couple of friends who I can call on for a ‘chat’ when things get tough and I need a friendly understanding face.

And of course, there are a couple of people close to us who really have no interest in recognising Jack’s Autism Spectrum Disorder, or maybe they do recognise it, but they just don’t stop to think that perhaps their thoughts and actions (or lack of thought and action) are hurtful and unsupportive…

But where else does the support come from?

Some of the professionals and therapists we have worked with over time have been incredibly supportive - both practically speaking and from an emotional aspect as well…

… but what do people do, and where do people go when they have little support around them?

… and how do people handle others around them who are totally insensitive… surely there must be a way to deal with the thoughtless remarks whilst still maintaining some sort of relationship with people.

I’d really love to hear people’s thoughts and ideas on this… for myself, for my friend, and for all of us…

… after all, we all need support. :-)

I had a strong reaction to the following comments:
Marita Says:
"The other problem is one sister-in-law and her husband who can not understand and think I am over reacting and there is nothing wrong. I emailed all our family when Heidi got into Kalparrin Early Intervention to celebrate our great news. Problem SIL reply was “and this is good?”."
Casdok Says:
"As to insensitive remarks, you do grow a thick skin. But sometimes it isnt enough."

Marla Says:
"We have lost lots of friends and I would say that visually M does not appear to have that many difficulties, at first. That could be why many friends just don’t get it. Over time they don’t want to hear about it and it really upsets me when they don’t offer any supportive words or go on and on about every little achievement their children are making and then act bored when I talk about M.

But, complaining does not help the situation. I guess I have found it is easier to let friends go and distance from family that just does not get it. I don’t have the energy anymore to put up with dumb comments."

Lou Says:
"And now Zach is in a school where they are ALL geeks, all brilliant - all special. So he doesn’t stand out like a sore thumb anymore. He fits in. And he has blossomed and prospered. Of all of the issues and people he has encountered in his life, it has been his contemporaries who have caused him the most bother. And now that he is in an environment where his contemporaries are just as blissfully unaware of their surroundings as he is - they don’t look for the ‘oddball’, single him out, verbally, emotionally and physically abuse him - he feels safe to be himself."

And I just love Sheri's attitude that she has learned to develop. I can relate to her comment in nearly every way.

Click here to view all of the responses thus far. I've only read the first 6 as of right now, as that is all there is but I suspect there will be more because this is an issue that truly needs addressing. You may not have a child with ASD, but maybe ADHD or some special needs. Where do you get your support?

6 Responses to "Find Out How to Get Support"

Marla (visit their site)

OOOOOOOHHHHHHHH! A big ol' kiss for me! Yes! Thank you so much!

Elissa - Managing Autism (visit their site)

Thanks for the link Jen... I'll be really interested to see what your readers have to say. Hopefully we can all get some new insights!
xx

Jen (visit their site)

I have a friend whose girls get sick all the time. And I mean ALL the time. When they get fevers - they don't fool around - they are 104- 105 degrees. They get SICK - A LOT. I can't relate to this. This friend also happens to be a germaphobe - cleans everything in side, big on antibacterial everything. Dirt is a no, no. So it's easy for me to say that she's the reason they don't get little germs and only the big ones. Which isn't necessarily true.

I bring that up because it helps me kinda see how people may (or may not) relate to us and what we have in our wonderful Ky. Who was originally declared Asperger's, but now new Doc says no, not so much. Maybe ADHD - but we're holding off on that one for now... we have a 'quirky' kid :o) definitely SI going on in there though. At any rate - if I turn it around and try to think of how I tend to just assume stuff with her and her family - how can I make her circumstances fit in my world? It's not right - because I'm not there living it. But I can see where people just don't get it - AND they don't get that their comments can be hurtful. With that, I've been able to accept that most of my friends are really just trying to help :o) regardless of how it comes across.

John Elder Robison (visit their site)

I don't really have any good suggestions for where to turn for support. I'm largely self-supporting.

But I do have an observation: What happened to the picture of the kids in the loader bucket?

These are Aspergian kids you have there! They should love machines! Don't they? If so, you should depict them in machine friendly settings. At some point, they'll get bigger and appreciate that.

I loved the steam locomotives at the museum when I was their size. In fact, I still do.

Jen P (visit their site)

Jen, that is some good insight. Thanks. I hope Elissa gets to see that too.

John, I actually had that picture as a part of the banner but when playing around with the different screen resolutions I had to cut one of the 2 of them out. I guess to be fair. I'll put it in the side bar just for you!!! Thanks for being so observant! Did I mention that I'm reading Running with Scissors now? We rented the movie a while back and it was interesting to watch having read your book first.

Elissa - Managing Autism (visit their site)

Hi Jen P! I am checking in to see what your readers have to say, and yes there definitely are some things to think about here.
Thanks everyone for sharing!