Tuesday, August 25, 2009

Friends who just "get it"...


I'm currently blogsitting for the lovely Hammie on her work blog and it got me thinking to friendships that have evolved since Munchkin got diagnosed... Like so many mothers of children with special or extra needs, it's not until the chips are down that you find out how strong your friendships are as you become almost consumed by all the therapies, appointments and all the extra needs that your child has on a day to day basis. Autism has an almost instantaneous grip of your life, spreading and seeping into every aspect of what you do. It controls where you go, when you shop, what your child wears and so on and on... Needless to say, you become almost obsessed with finding out everything you can about ASD, and its a huge spectrum so this takes up a large amount of any time you may have. Whilst your friends you have may have even grown up with, can show some empathy and sympathise that you cant "take Johnny to the playground because its next to a main road and there are two exits", very soon they may tire of hearing about the extra needs your child has. This is why it is so important to have a support group or network of friends to talk to when things are getting you down, or if you're having a hard day as they "get it" without even having to explain. All you have to say is "shes nudie again" and they'll understand that you may have had to put your little ones clothes on ten times already that day! You don't have to explain why you need to put clothes on back to front or sew the zip up on all-in-one pyjamas... they just get it!




One of the first places that people look for information on their childs diagnosis is the internet. While you can get very useful information via the web, you also have to be so careful what you read as not everything that is printed or put up on the net is scientifically tested or tried. Whilst trawling through web pages myself, I joined a parenting website Rollercoaster and found a huge amount of support from the girls on the Special Needs forums. After posting there for a number of months I started to get to "know" some of the girls. One mother posted me on some Hanen books and we got chatting. We both signed up to Facebook so that we could see pictures of each others families and found more of the Rollercoaster girls on there too. Hammie had set up a Facebook page for Irish Autism Action and we found her and when she added us she introduced us to huge amount of autie moms and that's where I found my real support network! I'm not saying that family and friends can not be supportive but there is something amazing about having the support of friends who may not walk in exactly the same shoes as you, but wear a similar size and type!




I've been using Facebook for over a year now and the majority of my "friends" are parents of kids on the spectrum and we fondly refer to each other as our "Autie family." Any new parent who joins us might not understand immediately where the "support" is in our group, as it looks like a bunch of people doing quizzes, or playing Farmtown or sending each other gifts or hearts... But look a little closer and you will see someone post a status saying they're having a tough day... very soon there is a handful of parents online, asking how they are, sending them support and generally just letting them know they aren't alone (which is so important in my books). You don't HAVE to do these applications and no one thinks any less of you if you don't. Status updates are often questions looking for advice or just statements of how you are feeling. Lots of parents use them to celebrate the big and the little achievements our children make :) There is also the private mail facility where you can ask selected friends advice if you have a sensitive subject you wish to discuss, and don't necessarily wish to post to your profile. It really is a wonderful resource at your fingertips, especially if like myself you cannot get out to support group meetings very often. Regardless of what time I have ever come online, if I can't sleep or for any other reason, there has always been someone else online at the same time as we have members of our Facebook group in all continents :)




"From little acorns great oaks gr
ow..."

16 comments:

Jean said...

I'm nearly 40 and i never dreamt t'internet would become such a central part of my life, or that i would find support among people I only knew by funny pseudonyms (hennie anyone? gruffalomum? are you ALL on drugs???).
I thought t'internet was strictly the preserve of the Young Wans...until my son was diagnosed and suddenly a seismic shift in friendships, as well as the whole Autism Thing, pulled the ground from under my feet.
My "friends", with whom i agonised over paint charts and anti wrinkle creams, got pretty fed up off my droning monologue about asd. Not that they said that, of course...but i knew when it happened.
But autism changed who i am, and what is important to me, and i need to talk about it. I need to make bad jokes about stimming and vent about PIK's to people who say "yeah, i hear ya", instead of nodding sympathetically and thinking "when will she EVER shut up???"
The dear friends i have made on RC initially, then FB, are so important to me...we all accept each other, and there are no conditions. Plus it's a feckin great excuse for a coffee morning!!!
Three cheers for new pals XXX
I am not overstating to say you have saved me

Anonymous said...

i can honestly say, hand on my heart id be lost without all u girls now. im so grateful u invited me along to facebook cause i wudnt hav got thru last few months without my "famly".
I love that I can come on and complain, ask for help or just brag about an achievment that wud seem so small to a typical family but all the girls know how huge it is to us.
great blog again petunia,
claire
xxx

Aud said...

Fab blog, I dont know how you do it, or how you have the time...lol

Id be lost without the support (and laughs!), espically when you feel that the 'outside world' just doesnt get it.

Keep up the great blogging!

Petunia said...

Girls you are who keep me sane, who lift me up when I'm feeling awful, who I want to tell when Munchkin does something funny... thank YOU... without you girls there would be no blog. You get it.... xx

Petunia said...

Oh and Jeanie... I get it too... didn't need a translator for PIK... I'm really sorry you didn't get to the last coffee morning but will see you soon! (am going to edit the blog to put a pic in of the last morning you made it to :) xx

Mand01 said...

I agree with Jean - I remember last year when I finally quit my bookclub because I couldn't handle the ballet and school talk - a school that my child was asked to leave because they couldn't handle her anymore, and ballet classes she will never join because she doesn't understand the rules. At first I was mad, because I felt so isolated, then I realised that I know who my people are - autsie and Aspie mums and dads, adult friends with ASD, and other families in the wider disability community here in Adelaide and online, and I didn't feel mad anymore. I just have different people now, and that's fine by me.

paula said...

i don't know where i would be had i not found the advice i did from all of you on rollercoaster and then facebook. it helped me with practical information, important decisions on which routes were open to me and my son, financial supports available, no one else tells you this stuff! i felt particularly abandoned by friends and couldn't believe it when neighbours avoided me and worst of all stopped inviting my child to parties all because they had heard the news, unfortunetly there is a long way to go with awareness of the general public out there, that is why contact online is so important to us 'auty' mums. thanks girls brilliant blog petunia x

Anonymous said...

Wow, fantastic blog, just gets better! well done you,xxx Vicki

Anonymous said...

Another great blog today as always, for some reason while I was reading this I started crying, maybe it was because as I have said before I finally feel I found a place where I belonged. Nobody judges you in our autie family, its a place of solace and comfort, advice and wisdom and yes playing insignificant games lol, a bunch of virtual roses sent by one of my autie friends means more to me than a bouquet arriving at the door. This place has meant the world to me in such a short space of time and I am so glad I stumbled across it because it has become my counselling and support network, without it I would be heading for the lunnybin. I hope many more who are just getting the same diagnosis that we have will stumble across our fabulous family.

xx
Andra

Anonymous said...

yep yet again you've done a gooden Petunia. I dont have any of my old friends left - and the ones I run into on the street, tend to run a mile when they see my brood coming (or usually they hear us first). Whether Eric is melting down, Boo is stimming, Snooky is making a bolt for things.... well you lot get the picture. Mostly my old friends get embarassed when they meet me.
I first came into contact with everyone through RC (Hammie stands out by a mile in the early days - but Blackcat, FrancesJ, Petunia, ClaireH, House of Wah) were my virtual support network - however when we all moved over to FB, you all became my REAL friends, I cherish you all, you make me laugh, you make me strong, you're like my safety blanket without which I may not cope.
Ill never be that same gal I was in 2004 before my munchie was diagnosed (I was 25 at the time), I lost who I was along the way of finding out as much as I could, fighting for what my boys needed, and basically getting by each day without a breakdown.
Now at (almost) 32, Ive realised that I may never be that 25 year old again, but Im a better person for the people Ive met along the way... I love you all truely xxxxx

Hennie
xx

PS I was sooo jealous of House of Wah pseudonym... classic lol xxx

Petunia said...

Andra, I welled up when I read your comment. Its amazing how much we rely on eachother for support and its great that we can get advice and help from the girls online. Hennie, I am so fortunate in that the girls I am friends with whos children are not on the spectrum are fantastic support to me too and have gone out of their way to educate themselves on Munchkins issues and help me along. I do think though that if I didn't have you girls to have a rant and a moan too I might have bored them and driven them mad with my autism talk long ago! I think back to what I was like at 25 Hennie, and I can honestly put my hand on my heart and say that I prefer the person I am now. I was quite selfish and a very intollerant person when I was younger and my experiences of not only my own family, but the families I have worked with, and you girls that I call my "autie family" have made me a better person.

I hope more parents who are facing the lonely road and feeling isolated and abandoned find our group. Doing the journey with company makes it so much easier to do!

xxx

Anonymous said...

Jaysus girls I will have to drop the House of Wah name and revert back to Dougal if this comment doesn't "take" this time!!! :)
Just wanted to say great blog, again and it is fantastic meeting you all. Looking forward to out night out in September to catch up with everyone and to see a few new faces :)
Michele
x

grufalomum said...

OK - had to add my 2pence worth ..
Petunia I have to say you are a natural at this bloggin stuff - and once again have recorded so eloquently what I think so many of us feel.
My husband often wonders why I am sittin in the play room typing away into the early hours to people i dont know on FB - what he doesnt realise is that yes we do know each other & oh so well.
Ok we might not all have met in person yet but we share so much and get the understanding that we dont quite get from other friends that just arent walking in the same style shoes we are in.
I am so looking forward to meeting you all in Sept and strengthening our already rock solid friendships. :)) xx

lisadom said...

Like I say, I think I've gone and put Ryan Tubridy AND Miriam O'Callaghan in charge of my workblog - will be out of a job ! You are doing a brilliant job Pet. Xx

jazzygal said...

Yeah petunia the support that facebook offers to all of us shouldn't be underestimated. It also provides an outlet and allows us to have a bit of fun. Something my hubby definitely doesn't get. He thinks I'm "20 years too old for that"!!

I also think by blogging about our journeys, escapades and achievements we also provide support to others and a cathartic outlet for our own emotions.

Getting the diagnosis is very lifechanging and how we interact with our friends unfortunately changes too. I have a friend who rolls his eyes as soon as I mention wiiboy...and work friends (when I was working)who'd run a mile when I mentioned him. I don't blame them really because I obsessed about him...but you see that was before I could get anyone (GP etc) to agree there was anything wrong with him. I was worried sick.

The one major positive to come out of our children's diagnosis is the friends we make who are travelling a similar road to us. These are friends we wouldn't have otherwise made. xx Jazzy

Anonymous said...

i am looking at these posts, and i am sure like others they are pulling at my heart strings. i dont think ive cried so much, and i have had to stop so many times as the pain in my heart keeps pounding. the overwhelming feelings i am having made me question myself, who am i crying for myself or my son. My son who is now 12 has struggled all these years with all his little oddities, not fitting in with what society expects, i am crying for him now when he told me about the school trips he hated going on, as he was left to sit alone on the bus, cause he had no friends, when he told me he used to look out the window and cry. i try hard to understand his isolation and then understand when he says to me he wishes he was dead, and then told me he had tried to commit suicide at the age of 9 with the belt from his dressing gown. this pains me a lot because i know how important it is to have friends, and i am so blessed to have so many good ones, and most importantly the ones i am finding on this site who can relate to the way i feel now. as i have always known my child was experiencing all these difficulties finding someone to finally listen to me was probably the hardest, i think i am also crying for those lost years of intervention as everyday now is bringing even greater problems. I want to specially thank you Petunia for answering a question i had on RC and then inviting me to facebook, and as i said to you before i didnt really quite get it all the quizzes and farm thing, reading your posts brings back all those struggles i had in those early years, when knowone would listen and take me seriously. when doctors had me questioning my own sanity.Although i am still struggling to get the supports he needs, the advice i get here is priceless. I am so looking forward to meeting everyone in september and regret so much not being able to get to the coffee morning. I can only repeat what others have said truly brilliant posts, and great work on the IAA site too, see you all soon sandra Burke xxxx

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