Just so you know – for those arriving here after reading “the book” – this blog was 12 months after Part 8 was written. So Peter did make it to the residential school which he so desperately needed. However, as you will see it wasn’t all plain sailing. 😦 In case you have doom and gloom overload please don’t despair….. things are looking up again now and I will be able to provide an update on that in a month I think. xxxx.
So, back to the crazy world of job hunting, ticking boxes, and the realities for many parents of children with disabilities and / or SEN. ……..
Part 1 – The Morning
As I am sitting in the Job Centre waiting for my Job Seekers Allowance meeting I imagine the question about to be posed; “Can you tell me about your job seeking activity this week?”… and the answer…….
“Well, I was here last Thursday at 4pm and later that evening my son phoned in a distressed state. He is in a specialist residential school 2hrs drive away. He wanted to come home. I was at gymnastics with my daughter and, while she finished a lesson, I arranged for her to stay over-night at a friend’s house. I drove home, collected some belongings dropped her off and left to collect my son. I arrived back at home with my son at 1.30 am on Friday morning. I spent the next few days supporting him and helping him to manage a transition back to the school that has allowed his distress to escalate out of all proportion a number of times. I liaised with the school and the psychiatrist. Yesterday I drove him back to school and spent time patiently explaining his needs – again. As I was driving back home, my son was texting me already, as his needs were neither understood nor met and he was upset – again. It’s really difficult because we both, more than anything, want this school to work for him. I have spent this week trying to liaise with psychiatrists, school, care and the local authority. This morning, less than 24 hours after dropping him back, he has called me again. Distressed again. The wrong approaches, those known to escalate his anxiety, have been used again. I have started to document what he said this morning so I can help the school to understand.
This afternoon I am attending a meeting and hope that it will lead to work. I have left messages with all those I need to speak to about my son to say please don’t call when I am in this meeting.”
In reality it went like this: The Job Coach looked at the blank page in my Job Seeker’s Log where I should record my job seeking activity. “You need to fill this in each week” she said. “I have” I replied.
Part 2 – the afternoon
After the disjointed job seekers avoidance event (punctuated with a 35 min call about Peter midway through) I came home and made a cup of tea and a couple of pieces of toast (breakfast and lunch). Whilst it went cold, I spoke to a senior case worker who had called. I was referred to him last week as “only the senior ones deal with this sort of thing”. He has since been (genuinely) tied up for days. Before he can proceed, he must check with the group manager. That will be a few more days.
On my way to the (work related) meeting I had my music on full-blast, so loud it actually hurt, to try to blast away the CRAP from my head and prepare to look professional.
I tried to sing and tried really, really, hard not to cry. The meeting was great and reminded me that I am more than a ‘SEN parent’, but a whole human being that would really like to get on with life.
I returned home to a letter from the DWP to say they will not be paying me any JSA as apparently I have £106 per week coming in and I only need £73 to live on.
Part 3 – the next day
The following morning I posted a letter to the JSA people to appeal their decision not to award me Job Seekers Avoidance (JSA) money on the basis that my allowance for the children is wrong (they calculate £0). There is a number to call but it is never answered according to the answerphone message – which directs you to the website – which has no link for anyone wishing to challenge their decisions. It turns out they no longer calculate your needs based on your number of children. Another little ‘snip’ to the benefits that are already rather hit and miss.
Over the next half term Peter needs a short stay on the Day Unit at the Children’s Hospital for some bloods tests. He also needs a brain MRI and it occurred to me that I need to chase this up. Really I want the two tests to be on the same day as, also during Peter’s half term he has an additional three appointments already. One of these is a specialist psychiatrist who will write a report detailing the exact provision Peter needs, so that school staff are ‘made’ to get it right by law when this document is put into his Education Health and Care Plan. Really he needs a school that will help him to get better, not worse. One that doesn’t need to be ‘made’ to get it right, but one that just does.
So today I call the MRI department at the Children’s Hospital – it takes a couple of goes and I get through. They have no referral, well there might be, it might be in a pile, it might be this, it might be that… why don’t I try again next week. I ask about waits – and is it reasonable for him to have it on the same day as his Day Unit appt……well it all depends on this, on that… best if i wait……
I phone the consultant’s secretary, she emails the consultant, seconds later she calls back he is WALKING the request down to MRI HIMSELF to ensure that the MRI is booked for the same day as the blood test. He was waiting to make sure that the two were on the same day. I spoke to the senior specialist nurse on the day unit, she too was supportive, flexible and accommodating…..and breathe.
Peter’s teacher called me at 3.30 as Peter is struggling more and more. She wanted ideas. I am out of ideas, and I think to myself, “The horse has bolted mate”. I had loads of ideas for months but the right people weren’t listening. We discussed some ideas. At teatime Peter called. Upset again. More minor issues, but his resilience is zero. He wants to come home. I talk to staff. I suggest things that will help him to stay. He wants to come home. Lily gets ready for bed, fills the car with pillows and we collect Peter. I return at 11pm to an email from the LA: there are processes that must be followed before another school can be considered for Peter.
Before going to bed, I discussed Peter’s options with a friend that happened to still be awake, wrote to the psychiatrist, to his teacher twice (once about the health stuff and once about the LA / education and this evening’s events) and drafted an email to the LA.
At 2.15 am I go to bed. I’ll be up in time for Lily to practice her cello before school as usual. Tomorrow she sees her psychologist for the post traumatic stress and severe anxiety she experienced as a result of after Peter’s last breakdown.
That was quite some 36 hours and again I did not comply with my goal of “6 hours of Job seeking activity”. The form may well be blank again next week, regardless, it seems we are not entitled for JSA anyway.
Post script: Things do get better for Peter, Lily and their Mum. I can’t blog about that just yet but hold on tight for good and happy news to follow…. 🙂
Posted by Peter and Lily’s mum
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