to the point...

i'm sitting here at my computer thinking about the day that's almost over, ever so grateful that tomorrow is finally friday, thankful the weekend is a little closer then what it was yesterday and the thought that crosses my mind is something i have been dealing with mentally for a long time. if you were told you were a bad mum how would you deal with it....how would you cope?

i've struggled with this for years because someone told me that i was...yep that i was a bad mum and not only did they say it once but a few times and in my honest opinion even once was way beyond more then enough and should never have happened but you know what.....they so totally got it wrong. however the impact of that statement however incorrect it has been, however many times it has been said, has torn me apart for years...over and over again.

they say time is a healer of all things and i often ask myself if this is true and i've come up with my own thoughts on it. time gradually allows you to move forward, sometimes in small steps and sometimes in leaps and bounds, yet sometimes the scars, although from the outside look good and appear as they should in the "healing" process, the reality of the internal stuff....yep the stuff that wounds and scars even deeper, the stuff people don't see on the outside is a very very different story.

as a mum of 4 children, 3 of them with autism and other disorders and disabilities, a wife of a husband who had to give up his job a few years back now because he could no longer see well enough, a carer to 4 people, the one that manages the multitude of appointments weekly, fights and advocates in every way possible for the help our kids need...for their rights, trying to keep some sort of "normality" in this chaotic world we live in and remembering to breathe as i go along....seriously if you can manage what i and every other carer out there can and still have the audacity to call me a bad mother then shame on you!!!

my brother once said to me something that i hold dear to my heart and treasure every day. at the end of 2008 when lance was in such a mess with everything ...my brother told me that lance was so lucky to have been born into this family with such loving parents and it hit me like a ton of bricks that the soul of this very child....our son could easily have been born into another family with all his difficulties and the situation could have been very different indeed.

i truly believe in god, i believe that there is purpose and reason for everything and ultimately i believe that god is in control no matter what mankind thinks. he chose tim and i to take care of these beautiful souls...yep even with all their difficulties and he knew we were worthy and able to manage. with every step that we take god is bigger and better and right there taking each step with us....and guess what... not only am i a good mum...i'm a great one at that!

hugs chris xoxo

it's been too long......

....since my last post. life has got the better of me and at the moment i am struggling to keep up with it all. it's no party dealing with everything that we have going on, trying to survive day to day is near impossible sometimes and i could really do with a clone....lol well at least a helper of all sorts.

our daughter stephanie, who turns 16 next month, finally had her diagnosis come through not quite 2 weeks ago and she too has autism. the difficulty here though is that she actually has more then one diagnoses just like lance and isaac which makes it all the more challenging. autism, mental illness - depression and being visually impaired ( best's vitelliform dystrophy) is what she is dealing with. the autism and best's vitelliform are for life and neither of them are linked, they are both completely separate diagnoses and need to be dealt with that way but as a whole if that makes any sense. both impact on her and both require services in place so she herself can survive the from day to day.

we deal with a lot here there's no doubt about that, out of our 4 kids grace is our only "typical" one and i am so thankful for that because she is able to function normally....well as normal as one does when faced with having 3 siblings that are autistic and each of them with multiple diagnoses and of course i am very thankful that i am for the most part functional as well. i say for the most part because some days i just don't feel i am functioning in any capacity whatsoever.

just on a bit of a random realisation if you've got this far you are possibly wondering who on earth is isaac? well i have mentioned it before but isaac is our youngest son maddison. after far too many difficulties over the years with him being called a her, he being called a she, departments having him in their books as a girl and not a boy.....maddi decided it was time to call himself by his middle name isaac and for the most part we are use to it. every department who deals with isaac (and there are a few) now know and even the school has been made aware.

while i'm on that subject...yep that of isaac...lol we started a new school year as many of you are aware, for those a little more foreign to the aussie way we have a good 5 - 6 week break over christmas and new year and we start a new school year around the end of january early february...anyhoo isaac managed the 1st 3 days and hasn't been back since and we are now into our 3rd week. he just got to a point where his anxieties were too high. we have urgent referrals into different departments with DHS (department of human services), he has been onboard with them since last year but we are still waiting for workers and now that it has become more urgent we are hoping something can be done a little sooner then later. he talked about going back to school today but this time i have had to say no because i need him to have some support and services sorted before i feel that he will be able to manage and therefore function a little better because without them we will just remain at zero and not move forward.

lance is managing righteous pups 3 afternoons a week for about 1.5 - 2 hours each time. yes i am still needing to be there as he still isn't at that stage he is able to function there on his own, but i am stepping back a little more just needing to be his eyes and ears to anything that could make him too anxious or difficult to manage.

i'm  putting in some more "supports" for him at righteous pups who are just wonderful with wanting to do the best they can to help lance and working out a full on structured routine for him with the help of visual aids but like all good things it just takes time and there is very little of it but we are slowly getting there.

this week we are putting in a change....but a change that will be better in the long term.....we just have to see how lance manages it even though i have been planning it for the past couple of weeks and been sorting it out with lance for the past week. normally we go out monday, thursday and friday and our plan is to change that a little and do monday, wednesday and friday so there is a rest day inbetween. something I wanted to have in place last year but with so many appointments hitting on a wednesday in particular it was impossible and although the appointments have not slowed they seem to just be all over the place and on most days anyway.

so being tuesday, today is lance's rest day and tomorrow we are out there again. there are lots of other really good reasons why i have also changed the days and no need to list them all here but i believe that once lance settles into the new routine he will manage so much better and be able to move forward easier at righteous pups and that will be beneficial all round. yes although still baby steps we are slowly moving forward.

anyways i have rambled on enough for now but before i sign off i just wanted to say it's hubbies birthday today....yep he's turned 21 again....lol so HAPPY BIRTHDAY TIM......wishing you a great day. love ya heaps! ♥♥♥
ciao xoxo

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:

I BELIEVE, I WISH and I HOPE. 

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 go.....lol!! oh and good luck! :)

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 lot.....lol

credits:
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 today.......it 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 again....an 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

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 autistic....click 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