Summer 2017 – week 2

Another eventful week, so eventful in fact I find it difficult to remember everything!

Last weekend we started to see the results of our efforts and to get the eldest’s sleep pattern back on track. Then we had a decision to make: did we send him to respite Monday afternoon or not? It was one of the rare nights that both ‘auties’ are at respite at the same time. Precious time to spend with our middle NT daughter. I spoke to respite, they were not able to take him out at all the following day. We decided to let him go for the overnight and have him come home early the following day. 

Sunday/Monday night. Between eldest, asleep at 1am, neighbour’s lad, howling on Skype or something until past 2am and youngest up at 5.15am I get 3 hours sleep. (There have been times when I’d have thought even that a luxury, but not feeling fortunate this morning!)

Monday evening, after a delivery of groceries, cooking dinner and emptying and re-feeding the washing machine, tumble and dishwasher off we went to the cinema. Brief normality. A good nights sleep and the morning starts with where I left off yesterday with cramming in as much admin and housework as possible in the short time I have.

10 am I recieve a phone call from the respite unit. An incident. Not eldest’s fault, but involved another service user, a staff member got hurt. 

10.05 another call. Transport collecting daughter from children’s resource centre but the booking sheet is wrong and she’s actually in until 3pm! Abruptly our plans for the day change completely.

11.30 ready and waiting for son to come home.

Midday, call from transport. A very unhappy chap on long taxi journey of over an hour home. Just as well the company know him well and that it’s unusual for him to be difficult. Our plans change again. We’re on standby to go and meet them on the last stretch home, but they make it back. Son dashes straight for the toilet. Must have been desperate!

The phone rings again! This time it’s the wobbly provider. Checking how things are. I say eldest not going this week (don’t want them to undo our hard work) Now they are saying not doing eldest from September. They’ve been doing him for six years but now they feel they are ‘not the right service for [him].’ BULLSHIT! Still, we’ve been trying to work out how to sort out some particular issues with them for a while, now it’s not an issue anymore, BUT, wonderful timing… gee ‘thanks’.

Evening. More bad news, from the respite unit this time; other user involved in incident is staying for 11 nights when family go abroad, (I assume on holiday) so two of eldest’s respite stays postponed. Both co-ordinated 10-10 stays, our ONLY full days with middle daughter for long day trips out (we haven’t had a holiday for 6 years because of autism related issues). I understand the unit had no choice…. but 😥 

Wednesday. Sleep. YAY!  Youngest stays at playscheme all day, too anxious earlier this year to do more than 10 minutes. BIG POSITIVE. Ask college if they can offer son some care over summer. They can. Not the ‘lost’ overnights but it’s a help. Feel better.

Thursday/Friday still working extra hard to get eldest back on track.

Saturday- now youngest is not sleeping well grrr she will not walk from home. She’s also.trying very hard to wind her brother up despite being scared if he so.much as looks at her. Constant supervision needed when both upstairs in their rooms. Then she starts to target me, jabbing or kicking, being uncooperative and lokkimg into my face and signing ‘sad’. Don’t react. Don’t react. That’s what she’s looking for. Her anxiety, boredom and lack of exercise all factors. God this job is hard!

Saturday/Sunday – breakthrough. Our Mr Happy is back. Walks, car drives, trips to McDonalds, the pub (twice). He loved it all. HOORAY! 🙂

Now if I could just get Little Miss Mischief sorted……..


About barbgrant

full-time parent/carer and part-time OU student
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