So.
Four years ago I was preganant and studying at university, joint top of my class (aged 33 by the way). Dh with a rather fabby little job for a national haulier at management level, children settled in school most on MN would pay for. Rented but nice house and aplns to buy similar when i'd qualified.
During that alst year 2 of my children were diagnosd with Autistic Spectrum Disorder. One i'd bet on, two? no. The more severe child regressed suddenly and lost all language.
I still finished university, did well in fact. DH changed his work hours so he worked an extra shift but with a slightly later start as ds1 was becoming very focussd with his aggressive behaviours and I was at risk. he worked more hours overall but they were slightly easier non us. He also started a little business working from home just to cover his hobby of electronics. I kept a diary for a while and I think he was doing 80 hours or so a week; he ended up ill and still kept going.
Well I took a year to raise the baby after exams (5 week old newborn sat outside waiting for a feed with dh and yet an A in finals), before planning to do PGCE or SW Conversion.
I spent that year fighting for everything, school placements, DLA, respite. Still can't have respite, ds1 is too aggressive, a risk to the respite workers. I actually get that, although it's hard on me. I started a very part time MA in Autism in the evenings on uni advice about keeping up to date.
Dh was made redundant: whole company packed up and moved to another place after merging with two other firms. Won't name where we live, let's just say Tewresa May likes to make comments about the really high unemployment rates here. So work hard to find, we'd moved away from family for me to study so no childcare in that form. SSD saying we can't use paid childcare because of aggression risk. Again understandable.
So Dh gets going with making his business bigger and realises it will require a few qualifications in his field to really be able to thrive and signs up for FT study alongside fitting in work. I continue with study, consistently geting top of my group. Two years later I'm getting A's in research modules and DH is doing well, we have a year to go.
Two months ago our last child (the one I was expecting in line one) failed his developmental checks and was referred to the clinic that diagnoses autism. We have one who isn't autistic, he has some DCD but fortunately needs nothing above an IEP.
I now have a tiny business registered but struggle to get it set up due to exhaustion, am waiting for DH to set me up a web page but he has been immersed in exams and ill- hopefully soon; am paying NI again though which feels positive. DS1 ahs a aplce at a specialist unti from September, who might be able to help him (day palce, comp level). DS3 is settled in a great SNU base. i've been helping in a school one day a week but having to cut back to a half day as never having more than 2 hours sleep in a row means I am no use to anyone after midday. DH helps enormously but is on nedication that makes him sleep without waking for a long spell each day so he doesn't wake at night; have spoken to GP and apparently is normal with this. On balance it's the only one of many side effects that affects me so hard to complain really. Does mean on school-helper days I have to be up at 5am to cover boys needs until DH wakes then run off. With ds1 settling around midnight and ds4 waking every hour or two.
So do we rely on tax credits? you bet we frigging do! As it is god knows what will happen to us in 2013 as DLA changes to PIP which loses the category for constant supervision which is what gives ds1 support, and the green paper on Sn education that asks for level of DLA / PIP to be considered. I saw the criteria for PIP today for the first time: by that autism will very, very rarely be coverd and pretty much never if child is verbal as mine are now. So presumably they will lsoe Sn education (have read green appers in depth, is indicated) and I will have to HE as no school with a brain would touch them- ds3 is adorable and kind but pretty much competely disabled and has no attentions apn or ability to self direct. With no TA he will rob a school of it's resources.
Too soon to know how ds4 will develop: asperger's I would guess, but her has extreme anxiety problems and is really quite lost in any group. He starts school nursery next eyar and it will collapse barring a miracle. We still don't qualify for help though despite having begged and truthfully told SW that at times I bar the kids into the bathroom for safety from meltdowns (I remain with melting down child obviously) and that I fullly expect to be seriosuly ahrmed eventually.
DH's business might yet fly when he ahs proper time to devote: he beleives 100%. me? I can see how cuts are eating away at his sector and am less sure. I have faith in him, the economy less so.
I have applications ready for PGCE and social work training for the eyar he graduates so he can work from home and coordinate pick ups and appoitnments; but ic an't get a comp placement becuase so manyw ant them. I am going toa sk SSD about setting up a sibling support group but alst time I tried they could not help with funding and wanted me to fund venue rent- LMAO at that!. I still get no sleep so am exhausted and frequently forgetful as a result. When DLA ends we will lose the ability to cover the rent (TCs carry a disability premium that will end with universal credit, and that helps enormously) but we will also lose the right to priority housing as DLA is the criteria for that: ds1 and ds3 could not cope in a B&B. Don;t worry says SW, we will have them fostered.
My babies. Whom I adore.
I get cuts, I get wanting assessments for DLA and all that (ATOS are dreadful though). I don't get what teh fuck I ddi wrong to deserve this dreadful luck adn then come on a supposed support board finding people criticising us for needing help running ourselves into the ground trying to tunnel out.
And is all this motivating me? honestly? i;ve goimne from up and completely motivated, sure of a prosperous future in some format, to starting toa ccept that society considers us a drain and at times thinking I should pack in trying, get a council hosue whilst we still have extra points and just give up. DH can't give up though, he's a better man than me as he ahs his illness on top.
Do I feel guilty about TC's though? Sadly yes. I feel guilty about every penny I take,, that my genetics are so shit we're costing teh state a fortune, that I can't get by on even less sleep. That I can not make my Dh or the boys healthier. And tbh, I couldn;t feel guiltier no matter what media tripe is out there about all benefits claimants being X Y or Z any more. I pretty much hate a lot of who I have ahd to become becuase I have a strong non-burden ethos: step quietly dn leave only positive impacts is my motto, instead we are a drain.
But teh boys? they are woderful, resourceful: ds1 has a talent that I (nad also school) think may well make him rich: ds3 not so but he brings joy to all. I can't imagine they should feel guilty for a second.