Shabby Miss Jenn

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


Sharon said...

Hugs and prayers for you and your family Chris.

amson said...
This comment has been removed by the author.