Shabby Miss Jenn

Thursday, 21 January 2010

wanna win a kit by edeline marta designs?

i thought that might just get your attention so read on to see how.

“Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense.” 

edeline has started an inspirational collection with 3 main words:


the kits won't be released together, they will be released one at a time.
edeline will randomly choose 2 winners and all you gotta do is post on her blog, yup as simple as that....well what ya waiting for off ya!! oh and good luck! :)

Wednesday, 20 January 2010

melody in love - edeline marta designs

yep this photo is of my almost 16 year old daughter stephanie just randomly doing what she randomly does, which on this particular day (my daughter grace's 17th) was not awhole

melody in love - edeline marta designs
fonts - bleeding cowboys and papyrus

so it's time to "show off" the latest release from edeline marta designs and my LO i created with the goodies. i love the photo of steph as well....she's such a dag but very photogenic.

we got some good news was steph and maddi's 6 weekly usual review with the eye specialist and although there are always going to be concerns there with the amount of fluid leaking from each retina of both kids eyes as well as the best's vitelliform dystrophy lesions neither child needed injections and the specialist thought it was time to "wing it" and see how we go for 2 months and of course if either child noticed any changes to come in sooner and see what's going on. we were also given some other good news but i can't mention that yet because it hasn't been released by the press/media so my lips are sealed. oh and both kids are now case studies with the family history and their case has indeed been taught to up and coming students....of course their names are not mentioned but i'm still cool with that.

anyway as much as there is so much to say i'm going to leave it there for now and sign out....tomorrows a busy day appointment with lance's case manager/planner from golden city support services and also his support worker from dhs are on the cards first thing then his support worker is out here to help tim and i set up routines, structures, weekly and daily diaries that is so desperate but i can't do it solely so it will be a full day of brainstorming, planning etc not only for lance's sake but for maddi and steph as they are both autistic as well and the rest of us.....yep grace and tim and i...huge thing but absolutely needed.

anyhoo that's it from me for tonight....take care and hugs, ciao xoxo

Saturday, 16 January 2010

some days are tough and some days just plain difficult!

it's the weekend finally....saturday night to be exact and i'm sitting here at my pc catching up on emails, facebook, my ct forum for edeline marta designs and trying to make some sense of the day and the difficulty it has been mentally. today did not go to plan.....the "plan" was to finally start working on organising all the paperwork that we need to keep, filing and putting some order to it so we can try and keep up with it all. any parents who have kids with disabilities would know what i'm talking about and seeing as we have 4 teens, 3 of them have serious disabilities you can imagine the stacks of paperwork, assessments, letters and legal documents that come in regularly. then there are the receipts, bills paid or not and just all that stuff you can't throw out even if you want to because the law requires you to keep it for a period of time. it's a huge job for us although we started making headway a little while ago and sorted stuff out into expanding files until we could afford to purchase some more stable filing cabinets. finally we achieved that and tim was able to get them together for us last night. this weekend was meant for the beginning of organisation and order.....nothing could have been further from the truth.

dealing with autism is not easy....far from it no matter how positive you try and stay and sometimes it is just plain tough and too difficult even for me. it is mentally challenging and demanding, physically demanding and challenging and together....mighty hard and tough stuff....24/7! life revolves around routine, structure, meltdowns, visual cues, major communication difficulties and learning to understand each child and their behaviours, the why's and what's......when and wherefores....and that's just me.....yep me as a mother trying to do the very best i can with hubby raising our 4 teenage kids.....3 of whom have multiple diagnoses....the primary one being autism.

today was a tough day dealing with one of our kids (no name needed) and the difficulties there....the difficulty that our child has understanding social skills, puberty, stranger danger, the struggles they have with communication both in understanding what people say and what struggles to come out of their mouth....which doesn't so we go non verbal and usually deal with pointing, poking to gain our attention and visual gestures of all sorts trying to make sense of what they are desperate to tell us and what we are desperate to say to them although most of the time the processing part just gets too much. yes we are getting help but it's saturday and "the help" is not there 24/7 and always when you need it the most, it's either the weekend or "the help" is on leave as is in our situation so we wade it out hoping that things get better, hoping that things settle, but ever so watchful and mindful of all that is going on and praying desperately that it doesn't result in another breakdown, self harming and another hospital trip!

dealing with autism also results in families feeling the pure isolation as they are doing so much on their own, struggling to deal with so much that goes with an ASD (autism spectrum disorder) and the impact it has on a family.....worse still is the truth.....often families find that those they thought were in their life, those they hoped for some support, understanding and acknowledgment within the family and friendship circle realise that mostly and sadly many of them walk away and life becomes such a lonely journey dealing with such a serious disability. yesterday i was told that tim and i were going to have a hard life after telling someone our situation when i was asked how things were going....but what i kept thinking was what about my kids........what about the struggles they will have, the tough life they are going to have because of their disability and the lack of respect and understanding of it in this world of ours....what about them? not every parents wish hey!!! but tim and i will be there every step of the way fighting for the help they continue to need and now all our kids are being cased managed and helped. maddi is finally onboard with dhs (dept of human services) and we are hoping for the same workers that work with lance will work with maddi (the request is in we just wait).....and steph is of course with camhs for now and being cased managed there. we are the lucky few but it's taken us over 12 months to get help for maddi and tons of fighting for it....i can only thank God in all his glory for what he has done....without him we would be lost.

till next time....when you see kids/teens even adults out and about with vacant/strange expressions on their faces, strange body postures and gestures, non verbal communication or an odd sense of language, meltdowns, hiding in their hoodies or behind their hair, strange behaviours and extreme anxieties....don't judge them for it or the parents for trying to keep it altogether....instead acknowledge that it's possible the situation before you is because we are dealing with the impact of autism and if you have no idea what it means to be on one of my links under the autism title in the right margin or just goggle it....then maybe you will understand what we deal with on a daily basis. acceptance and acknowledgment is all we ask for!

hugs xoxo

Thursday, 7 January 2010

latest emd sneak peek!

yep yep yep gotta love a good sneak peek of digital scrappin' goodies soon to be released and the latest one from EMD is awesome. i am loving the colours and the theme on this as I do all her kits and can't wait to get my hands on it. oki doki that's it from me....short and sweet just to give you all the heads up on whats coming soon from edeline marta designs. ciao chris xoxo

Wednesday, 6 January 2010

New Beginning - Edeline Marta Designs

New Beginning - Edeline Marta Designs
Fonts - NeoPrint M319, Got Heroin?, Arial Narrow.

i just love this kit from edeline marta designs. it's her newest and latest kit and was so easy to work with. the kit preview is clickable and linked to edeline's store if you wish to look at it a little closer. yep and i and love the way the LO turned out. that's DD grace and she turned 17 on the 23rd of Dec....just 2 days before christmas. my oh my how time flies and before you know it you are no longer dealing with children but young adults...hummmm makes me realise i'm getting older to. ;)

how was your christmas and new year? ours didn't quite go to plan like i expected..... i woke up pretty sick christmas day morning about 5 and ended up unable to get out of bed because i had a serious stomach ache, fever etc and spent the next 2.5 days in bed. i have never ever been sick on christmas day nor have i ever missed the day. the virus also got into my back and caused some major problems there with my degenerative disc and caused a disc bulge and i've been having trouble ever since. thankfully i had prepared the food the day before and at least tim and the kids were able to celebrate christmas even if it was without me :(

new year was quiet, just tim, i and the kids watching the fireworks on tv. but it was nice to not have to deal with the busyness and social side of things that people normally do because that meant our kids would not have coped as well.

anyhoo just a little blog update for you this time and i wish you all the very best for 2010. i know that it's time things were more positive for us....we've dealt with more then anyone could possibly wish on their worst enemy and i know our journey will be tough but it's time that we had it better then we have so i am trying to be as optimistic as i can and be thankful to God for getting us as far as we have got, still intact, still together and somewhat a little till next we meet, ciao and happy new year my friends. xoxo