This is the third in a five post series of posts from the very Bl**dy Awesome Parent – Lynn James-Jenkinson. Lynn is a proud mum and also the CEX of Pathway Associates and Director of the North West Training and Development Team.
Background to the series:
Writing this series of 5 Blogs I was thinking about –
- people who work in Health, Education and Social Care Services,
- individuals with a learning disability, autism or both and
- their families, friends and allies.
I also talked to friends because I was a bit worried about how Emma may feel. They, as they always do, helped me think about what Emma might say and how she might feel.
Could she really say what she thought from her perspective? Would she be asked?
I don’t mean that she couldn’t say what she thought. It’s not that the stories or what I will say is hard – for most of it she was there too. It’s more like there’s this unwritten rule that disabled people can’t share this stuff from their own perspective. What I mean is she maybe can’t because she hasn’t got the words for how it feels to be the source of so much pain for the people she loves most.
My friends helped me understand that from their perspective when you’re little and/or human, you can’t help but think the pain they see is all their fault – how does that make you feel, like shit really that’s how.
They told me that by the time you do have the words, you have this sense that its part of your job as a disabled person to protect them (the people you love) and telling the story from your perspective will definitely only hurt them more. “So, you keep it to yourself.”
As far as everyone else who might read the stories families tell are concerned, if they’re a disabled person themselves they know just how hopelessness, helplessness and loneliness feel, so why write it down? If they’re not, they either minimize your feelings, can’t empathise at all, or pity you (vomit emoji) and take it as evidence that they’re right to think it’s very sad to be a disabled person.
We were absolutely determined that Emma would enjoy the benefits that mainstream education brings – mainly friends and being visible and known in our community. I have always told services that we need this because one day, when Dad and I are dead, if someone is being mean to her stood at the bus stop on Southport Road (round the corner) and she is known the chances of someone walking by who knows her because they went to school with Emma or their brother/ sister did is much higher. She is visible in her community.
The move from Nursery to Primary saw us moving house purposefully to secure the support Emma needed in school delivered in a way that made sense to her and us. Liverpool CC produced the Statement of Educational Need – for which we have been thankful as that really has been the key but would not let the school – and Emma – be involved in choosing her TA, for us it has always been vital that Emma (and us) have a good relationship with her TA. If she (and we) are not happy with her support then getting up and ready for school every day becomes proper hard work and to be honest mornings are not my best time in the first place. I know there is an emphasis on not diagnosing our young people and avoiding EHCPs at all costs but stick to your guns and fight.
These pieces of paper should not be ‘the key’ that unlocks access to support but they really are.
Stick to your guns. This is not a social experiment this is about your Childs life including their adult life. It is not about what is easiest for the system/ teachers. You know your child believe yourself and do not give up if you really think you are right.
Be a Meerkat, there are rarely ‘innocent conversations’ with services/ teachers, be careful you don’t inadvertently agree to something in a corridor – it will come back at you in a meeting. If they get you on the phone always follow up with a ‘to confirm what we discussed’ email. (As a social worker I think that’s really sad that there is so little trust, but Pavlovs dogs – Blog 1 – help me still believe it to be necessary)
Blag, if you want time to check use phrases like – let me check the SEND guidance (or whatever it is) I am sure I read something that might help us get the best outcome for NAME.
The first ‘engagement’ I recall was with Reception teacher. “We think Emma would benefit from an extra year in reception”. NO NO NO NO – “don’t you want your child to be happy?”
We pointed out that Emma had Downs Syndrome and if they were waiting for her to catch up with her peers she might end up being the only child in Reception with breasts. (Academically she is still working on P scales for most school subjects as she leaves Year 11 so we would of been right”.) Also we added that we did not think she would be happy looking through the glass door at her friends in Year 1, some of whom she went to nursery with, wondering what she had done wrong.
We were also worried that if she was not with her year group the opportunity to have a ‘special’ conversation at Year 6 opened – as I said be a Merekat. We asked what would happen because we were determined she would go to Hillside like Kerry and Aidan. I checked with the head at Hillside – would she come up with the new year group so she would actually be year 7 when she moved? What would happen when she was 16 then? Would she leave in Year 10? Would she have to do an extra year and leave when she was 17? (this was before 16-18 was compulsory) Who would pay for that then? The heads response – don’t let them do it keep her with her real year group its causes us a nightmare.
LEA response – oh when she is 11 there is a lovely little school down the road. A little girl with Downs was Deputy Head Girl there” I remember saying well whoopy dooo for her and how many friends has she got that live on the same street? What makes you think that she wouldn’t be Deputy Head Girl at Hillside? She stayed with her Year Group and the joy we got when at Niccole’s junior school leavers Assembly Emma proudly showed the same person her Hillside Prefect tie.
Have a long memory for important things (not things like times and birth weights obviously lol) but the joy it brings you to quietly stick 2 fingers up is simply blissful. It took a while for people to realise we were serious about Emma going to Hillside like Kerry and Aidan but true to our word and with the unswerving support of Hillside High School and Emma’s friends in Year 6, many of whom said “if she isn’t going we aren’t” that’s where she went.
Don’t ‘settle’ – My Gran always said have no regrets. If you have done something wrong apologise and move on but really don’t have regrets for things you wish you had done, have a go even if its wrong and goes on your ‘never, ever again list’ or you have to rethink it its far better than getting to my age wondering what would of happened.
Emma started to get a personal budget when she was in Primary school. 5 hours per week which we converted to a Direct Payment and for many years co-commissioned great stuff with school for Emma to do with her friends after school. The outcome was supposed to be a short break for us – we got it and she had fun. The extra bonus was she had a positive reputation in school because she was making some fun stuff happen that they could all join in with.
Probably 2015 saw a change in personnel at the LA and we were forced to stop using the Personal Budget – that was working well and employ a PA. The argument put forward was that Emma could still go to the cinema – the fact that the change meant she went with an adult not her friends’ was lost along with some ‘out of school’ relationships. Her friends could not afford to go out with her (even though they wanted to) and were starting to do things that Emma could not join in with without support. (Refer LESSON 2)
Sara, Kerry and Aidan were a little worried when Emma went to school (they were for Nicci too) about bullies. Emma though has always had a real fondness for really quite naughty boys who to be totally fair have always stepped up to the plate and responded with as much affection. In recent years high school teachers have said that these relationships she has have actually helped them to see a different side to some young people who might of only had quite negative stories surrounding them. Emma is the one in class that gets them to settle down because they don’t want to upset her. She may well spend half her adult life with prison visiting orders but hey ho bullying won’t be an issue lol.
Emma settled well and has been blessed with consistent TA’s who are part of our family, she had Rachel for 2 years and Issy for the rest of her primary years (there was a year when Julie supported on and off too) and she has had Carol Anne who knew Emma at Primary and went with her to Hillside. Her TAs are our family and have been her voice in school, Rachel is actually named as an executor in our Will for Emma. At the end of Year 7 Emma’s Maths teacher wrote to me – Miss Christian – and said that she had been terrified of Emma being in her class because she had never taught at P scale level but that, with the great support from the SAIS team, she could see that over the year she had learnt as much as Emma. The letter was to thank us and Emma for helping her be a better teacher.
In Year 9 when her Statement of Educational Need was being converted to EHCP we started to ask what qualifications Emma would leave Hillside with as it was clear GCSEs weren’t for her. Hillside and their marvellous SENCO Michelle stepped up – it helped because Michelle had been aware of Emma all her life as she had taught Kerry and Aidan so had a relationship with us through school. Michele arranged for school to FUND Emma and her TA to attend the local FE College to do an Award ‘Open Awards’ qualification in Year 10, Certificate in Year 11 and plan for Diploma at college years 12-13. Emma has loved this and completed the Award and Certificate in Year 10, Diploma in Year 11 and will get her envelope in August with the rest of Year 11 on exam results day. Hillside have referred to this as Emma’s legacy for the school because there are other young people who GCSEs don’t’ cut it for who will benefit.
WE never signed off the EHCP because it was – in our view – never finished. The E bit was good with all the work Hillside were doing around qualifications but the H and C bits were never fully completed.
Year 11 and the horror that the banned ‘transition’ word brought has been a whole different ball game.
Back to RULE 3
Next week, we will be sharing Lynn’s fourth post – all about transition. We know there will be something in there for everyone.
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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.