Thursday, May 26, 2011

Grieving? But no-one died?






I recently did studies on the grief process and the different stages involved as part of my course and got to thinking how applicable this process is when you get a diagnosis of autism in the family. Although its not a death that you're dealing with, you still go through the stages as the future and plans you had have changed for you and your child. There are five stages in this process, Denial, Anger, Bargaining, Depression and Acceptance. If you are lucky like me, you get to the acceptance part in a reasonable time limit but you do still find yourself dipping in and out of the other stages on occasion...



Denial


Oh how well I remember this stage... the one where it was easier to bury my head in the sand in the hope that I was wrong. Sure she's young, she might grow out of it. I'm wrong, there isn't a problem, its all in my head. You stay here for a while in the hope that it will go away, the signs and flags are waving but you choose to ignore them for a while until the moment that the "penny drops" and your world starts crashing in on you!


Anger

Why my child. This happens to other people! When did I become one of them?!? This is so unfair that my beautiful little girl has to deal with these challenges. You become angry and frustrated that it happened to you and your family instead of Joe Bloggs down the road. Then it hits you that you always pitied the "other people" and get angry that you don't want to be patronised or pitied although you yourself have been guilty of the very same actions in the past. You get overwhelmed with the why me's until the answer hits you.... Why NOT me? This was something my mother taught me when she became ill and I wanted to know why she wasn't angry that she'd been dealt a duff hand although she'd lived a healthy and clean life. It was when she answered "why not me?" that I realised the wonderful lesson she was teaching me. Things can't always happen to "other people"...


Bargaining

We start looking for cures, for answers. If I do XYZ it will "fix" my child. We look for the magic bullet that will restore all our hopes and dreams. We hear what we have to do to help our child to improve their communication, their quality of life and we do anything possible to do it. ABA, OT, SALT, Social Stories, Schedules, diet, supplements etc. How many autie parents do we hear state that they'd sell their houses and bankrupt themselves in the pursuit of the latest therapy available. Unfortunately there are sharks out there that take advantage of parents at this stage promising that the latest "batshit therapy" is the "cure"... Swimming with dolphins is something that whilst a wonderful experience, it's not going to miraculously start your child talking in full sentences.


Depression

Hanging upside down for 3 hours a day, drinking the dew from buttercups hasn't fixed the problem. You realise that its going to be a long slog and damn hard work. Your life becomes a ritual of appointments, reports, letters and fighting for services for your child that will work. Its easy to lose sight of your own needs and let them slide. Unfortunately, getting run down and tired has its own pitfalls. One of these is the "Black Dog" of depression. You want to retreat into your cave and hide for a while until someone who cares for you and supports you drags you back out. Don't be afraid to talk to your GP. Sometimes we all need a bit of help in the shape of a little round pill, its nothing to be ashamed of. While medicinal help is good to deal with your depression short term, its getting a support network established and in place whether a local group or an online group that's vital. Having others who understand and "get it" will help drag you from the cave that which seems attractive but is so debilitating in the long run. Ask for help...


Acceptance

Ok, so life isn't going to be the same as you thought it was going to be. Let go of the old dreams and create new realistic ones. Whats important is not your dreams but your childs dreams. There are plenty of successful, entrepreneurial people out there living life with autism. Many many autists go to college, have successful careers, get married and have children of their own. Don't look too far into the future as it's impossible to tell right now what capabilities and strengths your child will have 20 years into the future! Embrace and enjoy their current strengths and capabilities and stop looking at what they can't do... look at what they can. Acceptance is the greatest gift you can give your child. Different doesn't mean wrong, just not the same. Don't let anyone make you feel that way.


I've found over the past two years that as Munchkin has moved about on the spectrum (and they do, you're not stuck at the same stage always as the day you get your diagnosis!) I have moved about between the different stages of grief. Acceptance is great when you get there, but you will have days when new challenges arise that you'll slip back a few stages or dwell in bargaining or depression a little while. Thing is to keep moving back towards acceptance and getting on with your lives. I know its easy for me to say this as Munchkin has made such amazing progress but that in itself can put you back to the denial stage until autism shows its face again and you need to pull yourself through the different stages. I guess they don't call it a rollercoaster of emotion for nothing eh?

9 comments:

Andra said...

Excellent blog!

Looking for Blue Sky said...

I think you can accept your child, but also feel the other emotions at the same time - usually brought on by the crap we have to deal with from the state and the services that our children don't get. Your blogs are always really uplifting, thank you xx

Oh Mammy said...

First time visiting here. What a great post. We've all gone through these stages with our ASD kids and as they move up and down the spectrum it happens again.

http://omammy.blogspot.com/

x

Jade8 said...

Totally agree with the whole cycle of grief, been there done that, its amazing to relise just how far we have all come on this journey

Momx3 said...

Great blog hun. One that really hits home with me. Really believe that we are on a rollercoaster. Some days scarier than others, but sure it has to stop someday....Right? xxx

Autimom said...

oh what another great blog hun, even made my eyes teary as its so true xx

Petunia said...

@ Andra, thanks hon xx
@ Looking for Blue Sky, very true, it really doesn't help when we have to fight for our kiddies entitlements every step of the way. We just have to try not to let the b@st@rds grind us down!
@ Oh Mammy, welcome and thanks for your comment. Look forward to reading your blog too :)
@ Jade08, it really is an incredible journey and I love to look back at my old posts and see how far Munchkin has come :)
@ Momx3, the highs on the rollercoaster ride help to balance out the dips eh? Can't answer if it ever stops though as my crystal ball is broken ;) Just having friends like you in my Rollercoaster carriage to share the journey helps though thanks chick xx
@ Autimom, your Butterfly and my Munchkin could be twins lol

Truf said...

Great blog! And it is true - I've been through the grief cycle 3 times in the last 8 years: after my dad died, when I was diagnosed with cancer, and when ds was diagnosed with ASD. And when one has gone through all the stages, you get not only acceptance but certain insight, maturity if you wish. Your mother's words are an example of that - she sounds as an amazing woman.

NanP said...

Any event that radically changes your life triggers this process. Be it the death of a loved on, marriage breakdown, or medical diagnostic, it's the same: it's all about parting with what was your "old" reality and ajusting to the "new".

Personnally I went through the same thing when Cathal was born... except that there was no room for "denial": the signs were there for all to see right from the start, and his little heart was so sick that his life hung in the balance for those first 6 weeks. So no room for denial... Straight to the next stage...

Acceptance? Absolutely... but, as you mention, there is the odd dipping backwards every so often... and the odd tear. I take that as a sign that I am very grounded in this reality ;-)

Post a Comment

Google analytics