Shabby Miss Jenn

Friday, 13 April 2012

blessed...

recently i've had the opportunity to share my story with a local newspaper regarding living life with autism. for those new to me and my blog i have 4 older kids and 3 of them have autism amongst other disorders and life here at times can be full on.

however and sorry if i offend anyone by mentioning this, life isn't always about autism. before anyone gets upset let me explain my thoughts behind why life isn't always about autism. as a family we have been through hell and back with our kids...no support, no help and when it was in it was rather unproductive, caused more harm then good and we asked of what little support we had to stop and no longer step in believing they could change our world in an instant when all they were doing was creating a mess. now if your still with me reading thank you....i'll continue.

we've had service providers and agencies in our home over the past 3 or so years (not for all that time but about 10/12 months on and off maybe) trying to offer the help and support a family needed but they weren't able to deliver the small things our family needed to move on and move forward and they cause a great deal of difficulty because many of the workers really didn't get it at all. it cause more distress, anxiety and harm to our kids and therefore us so we let them all go and told them to stop. now we still deal with the medical profession because they do actually know what they are doing but that's it...nothing more and we are able to breathe because of it.

as some of you may be aware we also deal with other disabilities/disorders whatever you wish to call them and i'm talking about depression, anxiety disorders and best's vitelliform dystrophy!

best's vitelliform dystrophy is not connected, linked or associated with autism in anyway like some people have thought it too be so and have told me that it is. it can't possibly be so.

best's vitelliform is a rarer genetic eye disease allowing for progressive blindness and there is no cure. my husband has it, both steph and isaac have it and steph and isaac have autism as well. but today we're talking the eye disease. they are both case studies, their eyes are famous here at least in australia with one paper already written about their eyes and the condition and the intervention needed. apparently a 2nd paper has been started and they are constantly monitored. now i'm not going into the nitty gritty of their eye sight because it's just far too difficult but what my kids deal with aside from the best's vitelliform dystrophy is torn retinas, leaking fluid and bleeds to the back of the eyes and what the specialists are not sure if all of the conditions are linked or whether they are completely separate conditions...thus and therefore the written work, case study papers etc etc.

so sometimes for our family it isn't always about autism...sometimes there are other major issues going on that can't be controlled and when you know that it's a matter of when and not if...that your kids are going to loose their sight then that to us as parents and family...is major.

let me tell you why else it's not always about autism...through my business chris turnbull photography, i've been supporting a gorgeous little girl by the name of ruby. i'm not the only one but ruby has touched the hearts of many of us as she has cystic fibrosis. ruby now needs a nebuliser and all the treatment that goes with that twice a day and for the rest of her life. i've had the opportunity to help ruby before by donating to an auction supporting and raising funds for cystic fibrosis and i'm helping and supporting again but this time to raise the much needed funds to purchase a new nebuliser for a little girl that needs it. they cost too much for any family to be able to purchase so i'm helping in a small way but still able to provide. you can read more about ruby's story here and here

there are families out there that have children with disorders and disabilities everywhere...their child doesn't have an autism spectrum disorder but they do have a serious life long illness or disability that they need support with as well. not every child or teenager or adult with a disability is funded...total misconception there. not every family dealing with these issues are able to purchase the items needed for their child no matter how life threatening their condition is.

the more and more i venture into the world of all abilities the more and more i have realised that just like me... a parent with a child or 2 or 3 with disorders or disabilities isn't funded...there are so many more families out there in the same situation and this breaks my heart to think that the aides and or tools one needs is usually left up to the parents to raise the funds for. i hear and read heartbreaking story after story galore. i know the families that have had to sell their family home to pay for the medical expenses, equipment, tools and aides for their loved ones. i know the families that have to pawn another precious item to make ends meet because their child needs another prescription filled or assessment done. i know the families where parents can no longer work or have had to take long term leave to help raise their child/ren because it takes 2 parents to support and look after. i've spoken to many face to face or over the phone or through email...this is their reality, this is the stuff the service providers or agencies may or may not know and this is stuff that the government has no idea about and even if they do they bury their heads in the sand!

i am blessed...i haven't lost a child although we have come close more times then i wish to reveal. we've dealt with crisis after crisis, medical expenses galore, financial hardship, lack of support and help in the areas we've needed it, mental and emotional strain and stress, we've dealt with situations that if you knew what they were it would break your heart as it has mine. but today is a good day...today my children are all here, safe, living life to the very best they can with all the support tim and i can give them.

today it isn't always about autism, today it is about cherishing life, no longer taking it for granted, supporting and helping others anyway we can and constantly finding inspiration all around us. we have gone without and we have sacrificed so much but today it's about moving forward and moving on and finding a place in our heart and soul for others because we all need to refocus and reprioritise and give a little to help alot.

chris xxx

if you can support this anyway you can little ruby roo and her family would truly be grateful ♥




1 comment:

**CREATIVE CARMELINA** said...

So happy to have found your blog today. I'm your newest follower. Hope you'll stop by and visit with me too.



ciao bella
creative carmelina