OK so having an autistoc child-
there is no respite: we are classe as being an emergency cases but were refused on basis we won;t harm our boys: locally the criteria for respite or care (note care: as in we won;t be able to institutionalise them either) is that the main carer must be either harming the child or terminally ill.
So, I have four boys, all conceived with FT employment etc etc etc.
DS has HFA, he attends a Base for kids who have autism but academic ability. He is aggressive: and it is odd, it comes out of the blue- an example is that DH was walking along a road with him and ds2 and ds1 just pushed him in front of a car, for some perceived insult 12 months before. We also get days like today where he is in constant meltdown and has hit maybe 40, 50 times. There is no way he can be in a room without an adult if there are other children in it. he has lots of otehr stuff as wel such as eating disorders and I am going to have to re-shop as he did a binge raid last night. usually i wake to check he is in his room every 2 - 3 hours but I missed it last night, i do soemtimes through exhaustion. he settles about midnight.
He needs help withe very aspect of organisation, hygiene anbd basic things- such as wearing a jumper in this weather or avoiding teh foods he cannot eat.
DS2 has no diagnosis but school refer to him as borderline dyspraxic, borderline ADD. Nobody will take the referral on. He has no real attention span so needs constant reminders and prompting. if we were a different family i would be fighting for a dx for him but we are limited in what we can do.
DS3 has more severe autism, he attenmds a Primary base. He talks but not clearly and that goes if he is distressed (aged 8). He is loveable, sweet- and totally biddable, with no sense of security or safety, and he has severe and frequent absences not unlike epilepsy but that was ruled out. he is 'caught in the middle'- he can write but only if someone leans over him telling him each letter; he can complete a task only if somoene is with him 1-1 to tell him to keep on task. LEA wanted to send him to MS Comp with no help- not a hope! This is my next battle I guess.
DS4 is 3 but ahs clear traits of AS. he will I imagine get a dx although I have no expectation of him needing SEN input or anything as yet. he is fine as long as you keep to the same routine, never take a different route home or replace a coat or choose a jumper he does not like. He hates clothing and strips off at night, this is a PITA with ehating as he can't tolerate blankets either - can't tell he is cold in fact, quite common on the spectrum. Je won;t ever get DLA as he has missed the system but if he did then it would go on heating and smoothies, as smoothies are the only fruit and veg he will ingest (also spectrum-common). He eats choccy cereal in the morning with soya milk but only if the milk is the one with the giraffe on; ham sandwich cut widthways with orange juice and an alpro yoghurt for lunch. Dinner we serve what we eat adn he just refuses it. But we think it is important for him to wines variety. Until alst week he was still BF in order to keep his nutrients up but my meds now prohbit that.
Dh was a transport manager for TNT. he was amde redundant so started a small business and went to uni. He is working harder and harder to keep going and also has depression problems. I fear it will make him ill.
It will make him ill; it always does.
I am a carer obviously, plus a PT student studying autism. I tried to start my own business but everything got on top of me with the worry and I had a mini breakdown and on GP advice can't take anything on for at least a month. My meds amke me very ill indeed but I need them becuase otherwise I doubt I would have seen Christmas. I couldn;t cope with the worry about the boys and their futures and the annual rent renewal (private rented) and constant cuts any more. not with the exhaustion as well.