My daughter is still not really sleeping and comes home from school everyday to throw the bags and blazer and shoes across the room and swear like a trooper. Probably neurotypical children/teenagers do this/want to do this? God knows I was not happy at secondary school. But she is, for the main. However the taxis drivers and the escort are driving her mad with talking to her as if she is stupid rather than with a educational developemental disorder that actually makes her bloody clever. Also, the little disabled girl wants to be picked up last and dropped first leaving my daughter, tall and well developed, if you understand what I'm saying, alone with two creepy old man *looking* at her. Knowing nothing will be said or done or else they would be so busted doesn't not help, as I'm sure half the world out there will *know*. She is not left alone in her chill space, they are obviously all scared she is going to do a runner, and the TA has been left with discretion to decide whether she attends History and Geography so she is not getting the space she needs. She masks her anxiety and over stimulation too well, I miss the signs until it's too late, what hope does the TA have, she's only had 5 weeks to get to know her?
No sleep. Injured wrist and last week, the ankle as well, requiring crutches as well as plastered wrist...
This week no sleep and this week, mostly season 4 Lewis and season 1 Morse and ST:TOS (asparagusmama b'day pressie to herself, having been promised it from bro and it not appearing)...
On Tuesday morning some glass got smashed. that evening, on the way back from daughter's drama class the arm fell of the wheelchair. We come home exhausted and stressed and daughter refuses sedative. lewis goes on, I re-heat soup and daughter demands seconds. I forget to put on flip flops and suddenly a sharp pain and my foot is pouring blood. Blood gushes for 15 minutes and stops finally, leaving glass somewhere in foot. Then I pass out and daughter phones out of hours doctor who send ambulance. Shock, ME and exhaustion cansed the faint. the sliver of glass will work it's way out, no worries. Souls of feet are like cheeks, they bleed copiously for small injuries and look scarier than they are.
Yet again I am all apologies for wasting the emergency services' time and yet again they are all sweetness and kindness and telling me that is exactly what they are here for. I thought they were for the life threatening dramic rescues, but no, as well, they are for the dregs like me; the lonely, alone, unsupported disabled, chronically ill soul carer of the autistic child. you know, the scummy scrougers the media and politicians love to hate and blame for all societies woes.
Okay, so Wednesday I phone wheelchair mainatainence and yesterdeay morning the arm is refixed and the other tightened. Off in the afternoon to pick up my daughter. The only day I do, we have to get a bus to the next town to see her therapist. Wheelcahir freezing on the way, I have to get out and push the heavy thing, wait at the school 50 minutes for a wheelchair taxi to take it home and then pick up walking frame and take us on to the next town, cost £20+ After her session I'm falling asleep, good old fashioned primary ME symptoms I hardly ever have. Legs are buckling, arms won't stay rigid and supportive on frame, eyes won't stay open. Make it to bus stop, sit, can't sit, realise must give in and lie on pavement with bag as pillow like a drunk. Daughter doing her hyperactive 'I am fucking scared' dance. Police car sees her then me, spins around and comes to see. Explain about ME. autisitc child with no sleep hormone, busted wheelchair, couldn't go on, taxi booked. Nice police people cancel taxi and drive us home. I bet our neighbours curtains were twitching, being brought home in a squad car. An Oxfordshire police squad car (okay, Thames Valley). H'm, on the borders though of locations shoots, so we could call it a Midsomer squad car... Daugher over the moon, she loves drama and attention. All the way back she and the policewoman talked of forensics, wanting to be a detective (they both did), merits of straight entry and graduate entry, of forensics - science, not dealing with people - and CID -getting all the facts. then on to straihg Q&A - How many domestics do you attend? (at least once a day, usually more); how many drunken incidencts (at least three a night, usually more);how many murders are there (not as much as Lewis! Only seen one, no you can't have details).
I hope the lovely young police office makes it to CID :)
This morning, couldn't move, daughter, drugged sleep last night, couldn't move. Taxi came and went. Daughter pulled at my eyes to open them, dragged at my arms, pulled off my quilt, and finally hit me. Oh, deja vu. Listen, you shits from her two primary schools, I am exhausted with ME, I need to sleep, I don't need to be attacked. This is not keeping her off to care for me, not ever was it. Can't move, can't speak and have to listen as she cries and pleads and sobs her way through phoning a taxi (our nice company), dressing, finds school bag. It breaks my heart. Once I can I phone school but both SENCOS in meetings. Leave name of TA who should meet her and ask for a return call, telling secretary she is autistic, I have ME and my wheelcahir broke yesterday and I cannot move and she has hit me in frustration that I cannot help her and could her TA please meet the taxi and the SENCOs phone me. The TAC is next Wednesday and this is in extremis but now it will be treated as the norm. Still, they are forcing my adult disibility social worker there so maybe I'll get a bigger care budget. So many lovely potential carers applied to my ad I could have two people. that's the positive, but all the negative experience is still expecting the implication I am a failed parent, worse, one who does not care...
And it so easy for those 'people' to push those buttons, becasue I do my very best but I am so ill and I have to be mother and father and carer and translator and security blanket and I am so ill, so tired and in so much pain I know I do fail. i do feel like a complete failure.
Life is poo, isn't it? And for those of us who are poo, we get left in the care of the paramedics and the police who work at the sharp end becasue the social workers and teachers and GPs do not see it as it can get as they say no to various support and they, of course, are the gatekeepers to the shrinking welfare net. Our lovely police and paramedicas pick us up when we fall through that net.