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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It Must Be Mum 
I hope they reinstated that job seekers 😡 If only they spent a few days in our footsteps. X
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nope!! and exactly that…. x
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You are an amazing woman.
The situation you are in is absolutely intolerable and unnecessary.
I am so incredibly sorry that you and your family are going through this. We are at Tier 3 & I hope that learning from your experience I can stop us from ever getting to Tier 4. Dealing with one child in this situation with both parents togethee and one income is unbelievably stressful. Leading up to diagnosis last year I often found myself shaking uncontrollably (fear, trauma – who knows?)
I can only imagine how hard it is to deal with the benefit system on top and the affects of your sons breakdown on your daughter (a full time job in itself). Any one of these things would be enough to send many people into fight/flight mode. The combined impact of everything you are experiencing must be traumatic beyond belief. I wish I had a way to fix such a deeply flawed and broken system but surely this blog and raising awareness is the start.
Thank you for posting.
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Oh my goodness. thank you. That shaking thing is just horrendous isn’t it – when I did a subject access request I shook for days in shock and disbelief – I was so naive, I had no idea how nasty *some* people in education can be. Have you seen ‘the book’? The story in there precedes the events in this post, its sort of how he ended up needing residential in the first place – and LOADS more about ‘the system’. If it was a film you would never believe it could be true would you. so very frustrating.
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Yes – I’ve read ‘the book’, with a mixture of rage, despair and utter horror. There are many similarities with us for the early stage of your journey – CAMHS at year 1, constantly told she is ‘fine, happy, just fine’ at school, mainly the “it must be mum” thing – my mental health questioned, my ability to parent, my boundaries. I thought an HFA/ASD diagnosis would change everything (Dec 2016) but I was mistaken. It is easier to deflect attention away from their incompetence, conscious or otherwise around accepting the recognised concept of ASD masking. It is easier to dream up an imagined home environment of no boundaries and anything goes (utter rubbish) than to be KIND to a child who is finding school unbearable, to make accommodations to help them to learn in a way that they can cope with. Similarly CAMHS (after the 7 month wait) have been fantastic, the community Paediatrician and Autism Team here have been really supportive – but does that relate to any educational outcomes or hope of even an EHCP – No. “She’s a clever girl, she doesn’t need support”.
I’m now reading up about the Vagus nerve and the parasympathetic nervous system and making up my own coping strategies with her as my daughter also regresses during meltdowns and it’s horrible, she is a 9 year old behaving like a distressed 2 year old, again a very bright, creative, articulate girl reduced to a screaming, sobbing, baby unable to talk while she is in that state, almost like a night terror. Her dreams and daytime anxieties are horrific nightmares of separation or being tortured by her teacher, luckily they haven’t spilled over into the conscious part of her psyche, and I hope they never will, but your blog serves as a warning to me to prioritise her mental health above all else.
I feel like my job is to undo whatever it is they do to her during her 2 – 4 hours at school, settle her nervous system, and reassure her that everything is ok. It takes hours, she’s often still awake at 10.30/11pm and then I have to start on my work; researching ASD, schools, coping strategies, emailing CAMHS/ consultants /parent partnership. It is a full time job and then some. I don’t feel up to it, but have to keep reminding myself that I am, and, as you said in one of your posts, no one else is going to do it. So we have to be medical expert/lawyer/carer/educational specialist, and mum, and also remember not to have a single negative emotion between the hours our children are awake and especially not to express any kind of sadness/anger/genuine concern during professional meetings, because then our mental health/ability to parent will be the issue.
I’m starting to think my options are 1) get a really good lawyer (on a no win no fee, as there is no money and I can’t work) 2) home school, but then no EHCP and no appropriate secondary education.
I’m sending you and your remarkable children so much hope and positivity through the ether. Thank you for posting your painful story. I hope we can change things. xxx
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Thank you so much for this comment – I have just realised that I didn’t reply before and I am sorry about that especially as you have obviously taken a lot of time to make such a thoughtful reply. All hope an positivity gratefully received 🙂
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Hugs xx
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Mum, you are a heroine!!! If you could somehow land a job as PM our country – nay, the world! – would be sorted. (Assuming, of course, that this brought you all the help you need for Peter and Lily!) I have a SEN child of my own, but somehow, despite all our problems, have lucked out on supportive (if not always effective) school, LEA and NHS. I still struggle sometimes, and am on anti-anxiety medication myself to cope. If I were in your shoes, I think by now; heck, long before now! – I would have had a nervous breakdown, quite possibly assaulted somebody. I might have just taken my child and fled the country… I am so impressed by how strong, articulate and understanding you are despite all that is thrown at you; one would think that merely by talking to you, these fools would instantly realise that it CAN’T be mum, because an incompetent mother would not have this level of smarts and perseverance! I’m delighted at how helpful the NHS have been; appalled by your schools and LEA. Can only assume (hope??) you are in some small, backwater area of the country and not a major city. I could well be wrong. Although I’ve had largely positive experiences, I know plenty of people in my own area who haven’t; it all seems to be luck of the draw. Incidentally I’m on the steering committee of our local Parent Carer Forum and take part in several autism forums so I run into a lot of heart breaking cases, but yours takes the biscuit, the cake, the tea pot and the whole tea trolley! I don’t know how you’d go about it (and you probably haven’t the energy) but it sounds to me as though you have an excellent case for suing the LEA for putting your children at risk, or malpractice, or something. Incidentally, I’m sure you have your reasons (and it isn’t something I’d want to do myself except in the most desperate circumstances) but throughout all this, have you ever considered home schooling Peter yourself, just to relieve him of the pressure of school? I’m sure you’ve discussed this with friends, but it didn’t come up in the blog. Also, I can so sympathise with you for the difficulties you’ve had with your friends… it exhausted me reading this blog and I don’t know you, so while it is a crying shame they couldn’t be there for you when you needed them, I can also understand why, as you said, being hit with the full reality all at once just blew some of them away. You are a very understanding person to realise and forgive them for this. I hope some of them have collected themselves and come back to help you fight. I’m so glad to read that better times have come, and hope they continue. But no matter what happens, please try to hold on to the thought that it most certainly is not ‘mum’, because I can’t imagine a braver, more resourceful and competent parent. You are a role model for us all. Wishing you and your children the very best! Xxx
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Gail what an awesome comment! thank you so much for taking the time to write it – it has been fully appreciated here. I read most of it to Peter and Lily and it made us all laugh in parts. Peter agrees with the idea of suing and we all think it would be a good idea for me to have a job in the Government; maybe minister for SEN services !!!!!
Keep sharing this story and maybe someone in power will have the same idea 🙂
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My heart goes out to you all. I have 2 very high functioning ASD children (now adults) both with co-morbidities. My middle child doesn’t have an ASD diagnosis but has had serious MH issues since she was 12 years old so I too can say CAHMs were brilliant . My youngest now 21 is also ASD and has a 4 year social delay.
They survived mainstream schooling (with a lot of support and home schooling in addition) and academically did well but any hopes for me to have a career ended by the time my son was 3. I knew he was different to his peers and having worked in MH in a clinical role for over 9 years had a pretty good idea what it was. I lost count of the number of hours I spent arguing their corner during the 2 decades they were in school.
ASD was not understood back in the 1990s at all and I can remember my son’s teacher in Y1 saying “He’s a grand lad but he won’t ever achieve anything academic” . This same teacher rang me one evening asking me to return to the school with my son so “he could undo whatever he done to the classroom computer because I have no idea where to start”!
That 6 year old boy is now 26 years old, a computing graduate and works 2 days a week for a computing business. It got easier for my two once they got to university as their needs were better met (not perfect but better) I say this not to gloat but to say to all parents keep the faith. I know we are luckier than some but we also all worked very hard and it has got easier (a bit, sometimes). But ASD never goes away my 3 are now adults and still struggle. The mashed potatoes sometimes are still too grainy, the clothing still has to feel right and heaven forbid I change the fabric softener.
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I just wanted to thank you for taking the time to write about your awful, experiences. As a health professional (a SLT), I hope that your honest & really quite shocking story will make me more empathic and understanding towards parents battling through similar difficulties. I will point my students & supervisees in the direction of your blog. The perspective of parents is something that can’t really be ‘taught’ on an undergraduate course, but well-written stories like yours help enormously in filling these gaps.
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Wow. thank you so much, Jan that is really helpful. Any and all feedback is welcome. If any of your students are on twitter it may be worth them tracking me down – there are many experienced SLTs connected there and it’s a great place to test out ideas etc. One more thing (sorry!) this blog https://itmustbemum.wordpress.com/2017/01/24/when-equal-treatment-is-not-fair-treatment/ was written to try to explain to schools how important specialist SLT is for our children!
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A friend left a link to your ‘book’ tonight on my Facebook, I’ve cried, screamed and shouted in agreement with large portions of it. Our stories are similar, we chose to home educate due to my son’s trauma, only it hasn’t gone, it’s got worse, and we are now (5 years later) trying to get services support and hitting HUGE brick walls. I am at the END of this rope, I have no more in me and we are at MASSIVE risk of family breakdown, I don’t want to be, I want to be his mum! I can’t be his mum!!! We have been referred to the ‘teen’ team at Social, they accessed our finances, accused me of my kids missing from Education and have gone into the dust bunnies somewhere. We have another MDM end of the month and nothing has changed, it’s worse life is worse, I adore my children, i honestly do, they are my world, but there is no more for me to give. ❤
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So sorry that I have only just seen this. I hope everything is looking better all these months on 😦
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I know some of your anguish and have a son who is waiting for an assessment into Learning disability. I am home educating him as he couldn`t cope with school. He has been out of school for a year and is able to talk about his difficulties in school but need his issues with learning looking into with CAMHS.
I think you deserve a medal for what you have had to endure with the LA and Peter`s school. You would have enough grounds to sue them for inhumane treatment of both your children and breaches of human rights..
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I hope things are looking up for you all and best wishes.
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I understand some of your anguish and have a son who is 15 yrs. He was assumed to be fine in school but we had to de-register him due to school refusal. He has fewer meltdowns now that he is home educated. He is on a waiting list for a Learning Disability assessment with CAMHS so that we may be able to help him more. Good luck in the future and I hope things are looking up for you all.
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