Goodbye but not farewell

We are sad to let you know that Debs is stepping down from her position as a Director of Bringing Us Together.  

Goodbye but not farewell - Bringing Us Together

However, Debs will always be a part of Bringing Us Together and we are pleased to let you know that she will continue working on the BAPS blogging awards taking place. 

As one of the two founding members (the other being Katie Clarke), Bringing Us Together has grown from strength to strength under her joint leadership. We would like to thank Debs for her lovely presence, her never-failing energy, her strong vision, and her constant hard work. We will miss her and wish her all the very best for her future ventures. We hope to continue to work alongside Debs in one way or another. 

Debs has close contacts with many of you. If you would like to contact her directly, to say goodbye or to talk with her about work you might like to involve her in, please do get in touch with her. She would love to hear from you! debs@lifeas-pland.com

In this time of change, we have not yet decided on a new Director for Bringing Us Together. We are confident that this will happen when the time is right. In the meantime, Bringing Us Together will continue with its current projects and, as always, we welcome your ideas and input. We will be in touch about future projects. 

But in the meantime, a huge thank you to Debs! We will miss you!

BAPS – The Rules and Lessons

Over the last few weeks, we have been sharing posts from the lovely Lynn James-Jenkinson. Throughout the posts, Lynn has shared learning points and rules she has learned over the years.

BAPS – Becoming the Mother

BAPS – Welcome to Holland

BAPS – Education

BAPS – the T word is banned

We have brought all the Rules and Lessons together in one post for you.

The Rules

RULE 1

Stay in control, trust your guts and surround yourself with people who will help you see that you are losing control and the system is taking over your life. Keep the balance right and services know when to let go you nurture the very dependency you then criticise people for later in life

RULE 2

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.

RULE 3

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.

RULE 4

Blag, if you want time to check use phrases like – let me check the SEND guidance I am sure I read something that might help us get the best outcome for NAME.

RULE 5 

Have a long memory for important things (not things like times and birth weights obviously lol) – the joy it brings you to quietly stick 2 fingers up is simply blissful.

RULE 6

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.

RULE 7

Keep your cards close to your chest and don’t ‘show your hand too soon. Bide your time. Don’t let on you might know the Law (or refer back to RULE 4 BLAG) if they know too soon they will have legal services and tem managers checking emails before they are sent – Refer back to RULE 3 confirm things in an email.

RULE 8

Get independent advocacy support for your young person so you can be confident that it is there voice that is leading planning not you. You can start to believe that this just might be your unrealistic expectations and what YOU want. The rules will help you stay confident about whose life it is your are doing battle for.

RULE 9

Keep people who live in the real world around you. It is so easy to get sucked into believing what you are told – people in the real world will say “that’s stupid, why?”


The Lessons

LESSON 1

Remember the privilege of being invited into someone’s life. No one wakes up wanting a nurse or social worker – trust me if you are there you are probably the last hope they have of support. Think about how hard it is to pick the phone up and ask for help.

LESSON 2

I don’t want to be her only friend or her my only friend – the right order of things is that parents die first, if you think that mums and dads don’t think about it before they close their eyes each night or as soon as they wake up your are deluded. To build and maintain friendships with your child takes energy, creativity and commitment.

LESSON 3

Have a read of the poem ‘Welcome to Holland’ by Emily Perl Kingsley, for me that perfectly expressed how I felt. I don’t normally do vomit inducing poems/ words of wisdom but this did help me find some words to express that I had no ‘adversity’ to overcome. Emma is no more, or less, special than her brothers and sisters.

They all have needs that are ‘special’ to them. The exhausting thing about being Emma’s mum are the folk who feel they have a right to an opinion or feel it’s their role to make accessing support as bloody hard as it could possibly be.

LESSON 4 

Do not let our young people ‘settle’ at 16 because that is easiest. If the extent of our ambition and expectation is Life Skills and maybe an Internship and staying in FE until they are 25 because they can with a funded EHCP then do not be surprised or complain at the dependency you create.


You can download the whole list as a PDF for your fridge if you like.  Click on the image below.

BAPS – The “T” Word is banned

This is the fourth 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.

If you missed the first three in the series, you can read them here , here and here

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. 

The “T” Word is banned as we step into the future – together

 Year 11 – little could I know the energy this would take to support Emma, far more than Kerry and Aidan needed…. why? Well because Emma needs to continue to access the support she is entitled to from public services. 

In Year 9 we had started to talk about Year 12 as we knew that Hillside didn’t have its own Sixth Form so she would have to leave with the rest of Year 11. This led to the original plan that Emma working with the local FE College to complete the ‘Open Learning’ Award, Certificate and Diploma while she was at Hillside. 

During Year 10 and review of the EHCP it became apparent that Plan A would be scrapped because she would have completed the Diploma while still at Hillside. With the Michelle (SENCO at Hillside) we started to ask about options open to Emma including vocational options like some of her peers – and brother and sisters – had done at Year 12.

We were directed to ‘the Local Offer’ which was one of the most depressing evenings I have spent. Everything on there was either GCSE entry or segregated/ special college. 

There were (are) no vocational options on the Local Offer that young people who may not be GCSE level can access. 

Emma and her dance friends

Emma’s passion is dance. She has gone to Loretta Legge Theatre School from being 5 or 6. The attitude of people in the real world is always – in my experience – lets throw her in, assume she will manage but have older peers ready to provide support if she needs it.

It is because of Ms Legge, Mrs Urszuly and Miss Walters that she has built on the physical skills Eileen Kinley started with her. Supporting her gross motor skills and all those months Miss Walters was determined that Emma would learn to skip helped her balance and as a result pencil control. Mainly it has helped Emma be part of a wider dance family. Her dance friends produce 2 flip chart sized posters of all the things they like and admire about Emma for her – what shone was that this is where she is loved and valued as an equal member of the team.

Dance is who she is, it is what she does, how she communicates, her friendships, every night, her passion so we asked about how she might access this like her peers at 16-18. 

RULE 7 

Keep your cards close to your chest and don’t ‘show your hand too soon. Bide your time. Don’t let on you might know the Law (or refer back to RULE 4 BLAG) if they know too soon they will have legal services and team managers checking emails before they are sent – Refer back to RULE S confirm things in an email. 

In a meeting Emma and I were told that “We (the LA) are willing to consider dance as a hobby Emma but it will never be a job for you”. – Refer to RULE 4 and bide your time…. I cannot deny though that this statement incensed us and lit that fire of absolute determination that at 16 Emma James-Jenkinson would not be ‘settling’ for the easy option- RULE 6. 

We asked – repeatedly – and have still not got an answer – how a new provider might get onto the Local Offer if we found something that Emma could do? We were told “unequivocally we would not fund that” – Refer to RULE 4 and bide your time. 

I started to look round what was being offered to Year 11’s across the area that I thought Emma might like and contacted a Jellies Theatre School who were offering a free BTEC Level 3 in Performing Arts. After a call they suggested Emma go along to an open audition with other young people and they would take it from there. 

Meanwhile we supported Emma to look at the things ‘on offer’ on the Local Offer. On ‘the offer’ there was a segregated college offering a certificate in Life Skills that we were told she might be able to go to for 3 years before going to the local FE college (where she had already competed the Diploma offered) until she was 25 with a funded EHCP and despite the fact that she would of already completed the Diploma. 

What followed were many many hours of homework for us, learning the rules as best we could, or learning enough about the rules and who ever we could turn to so that it would become obvious we would be willing to fight all the way. 

It felt like there was a view developing that ‘mum’ didn’t want Emma to go to the segregated college because she doesn’t approve but Emma might like it and its her voice that matters. Absolutely it’s her voice that matters…… I asked a friend who works also as an independent advocate to support Emma to make sure her voice was heard above her families and above the LAs to make certain that we were doing what she really wanted. (Refer RULE 2) 

RULE 8

Get independent advocacy support for your young person so you can be confident that it is there voice that is leading planning not you. You can start to believe that this just might be your unrealistic expectations and what YOU want. RULE 8 and 9 will help you stay confident about whose life it is your are doing battle for. 

Emma flew through her audition and the Faculty Head interview with the team at Jellies – as I said people in the real world generally in my experience see opportunities and how inclusion will help their organisation rather than a list of why not’s. 

RULE 9

Keep people who live in the real world around you. It is so easy to get sucked into believing what you are told– people in the real world will say “that’s stupid why” 

Brighter Futures as the college and Jellies as the Industry partner recognised Emma’s passion and immediately offered to run a BTECC Level 1 / 2 alongside their Level 3 and helped by submitting the required application for higher needs funding for Emma. We asked for 30 hours support – 18 hours performing arts, 3 hours functional maths, 3 hours functional English, 6 hours enrichment. 

The LA Social Care Team listened to Emma and her family and worked with her Independent Advocate Sarah Bickerton (thank you Sarah) to produce one of the first ever ‘assessments’ where I can see and hear Emma and as a result additional Direct Payments were agreed. These still have to be used to employ a PA so Emma will employ someone to perhaps support her travel home from Jellies on the bus with her friends – we don’t know yet time will tell what will work for Emma. 

So here we are on the cliff that is Year 11 about to leap off into the future. Emma will start at Jellies/ Brighter Futures in September and like every other 16 year old realise she has found what she really wants and is able to do or will realise it’s not what she wants – both lessons equally important. 

LESSON 4

Do not let our young people ‘settle’ at 16 because that is easiest. If the extent of our ambition and expectation is Life Skills and maybe an Internship and staying in FE until they are 25 because they can with a funded EHCP then do not be surprised or complain at the dependency you create.

On one hand the thought of 9 years fulltime education would make life easier for Tony and I because initially we would not have to give up work to support Emma, but then it wouldn’t I don’t think because she would not be happy. It is little surprise that the number of adults with a learning disability, autism or both in employment remains dismally low when our expectation and ambition levels are equally low. 

For now though back to RULE 3 – Meerkat


Next week we will be sharing a round up of Lynn’s Lessons and Rules. You will be able to download them so you can have them to hand for future reference. We know we will be referring back to them and thinking how grateful we are to Lynn for taking the time to put them all together.

BAPS – Education

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.

If you missed the first two in the series, you can read them here and here.

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. 

Education

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.

RULE 2

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.

RULE 3

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)

Photos of Emma throughout her time at school - from nursery to year 11

RULE 4

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.

RULE 5

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.

RULE 6

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.

Don’t miss it, you can sign up to get our blog posts directly into your inbox.

 

BAPS – Welcome to Holland

This is the second 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.

If you missed the first in the series, you can read it here

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. 

Welcome to Holland 

Emma was born on 10th May 2003 at some time that day and weighed a decent weight (sorry, not sorry, but I am not that kind of mum that remembers stuff like that). 

Emma has 2 older brothers (Anthony who passed away in 2002 and Aidan) and 2 older sisters (Sara and Kerry), subsequently she also has a younger sister Niccole. We purposefully had Niccole because we knew Emma could not afford to be the ‘baby’ of the bunch and being a ‘big sister’ would be important. 

Emma was the only one of our crew that found the right way out and was not born breach but she wasn’t breathing for what felt like hours, the relief when she cried…. 

We did not know that Emma had Downs Syndrome before she was born. 

Photo of Emma, Lynn's daughter, sticking her tongue out as a child.

Immediately following her birth there were an array of people darting in the room – checking muscle tone and palmer creases…… Tony (Hubby) brought her to me and quietly said “I think she has Downs’”, I took a look turned to the Dr and said “We think she has Down’s Syndrome”. 

His reply?

“Oh thank goodness for that so do we, shall I get a Social Worker?” 

I remember saying she needs feeding and I need a sleep if you can find one to do that great if not leave us alone please to process this. 

At THAT second there was a piercing scream from the room next door. I asked the midwife what was going on and he said “her baby has been born dead”. 

OK reality check, pass Emma here and let’s get on with this then. So our journey began….. 

LESSON 3

Have a read of the poem ‘Welcome to Holland’ by Emily Perl Kingsley, for me that perfectly expressed how I felt. I don’t normally do vomit inducing poems/ words of wisdom but this did help me find some words to express that I had no ‘adversity’ to overcome. 

Emma is no more, or less, special than her brothers and sisters. They all have needs that are ‘special’ to them. The exhausting thing about being Emma’s mum are the folk who feel they have a right to an opinion or feel it’s their role to make accessing support as bloody hard as it could possibly be. 

The last 16 years have made me think about all those years when I said to families – I’m a mum too I do understand – I really didn’t fully. I think I kinda knew it and on reflection should have perhaps had the confidence to acknowledge that I could never truly understand how someone else is feeling in facing their journey. 

The key difference is how exhausting public services make my life now when I am trying to access the support of those public services in a way that makes sense to Emma and us. 

That does not make people who work in services who do not have lived experience the enemy or less worthy of an opinion – I hate that too it feels like a game of top trumps and gets right on my wick. All I ask is that we all collectively remember humanity. If people are upset or angry it’s probably not with you (the service worker), although there have been occasions when it was you I was angry with) – Pavlovs dogs again (see Blog 1

I remember getting far more cards when I had Emma, lots of them told us that ‘HE’ doesn’t give you more to cope with than you can handle and that we must be very special people to be chosen to get such a gift….

Pleeeeassse 

So began the endless repetition of appointments that we got sucked into. At first of course you want the full MOT but even when there are no issues the endless ‘make another appointment on the way out” began. 

For Emma we were lucky she had none of the possible ‘health conditions’ that can be associated with Downs Syndrome but it felt like even though that was the case they could not let go of us. 

RULE 1

Stay in control, trust your guts and surround yourself with people who will help you see that you are losing control and the system is taking over your life. Keep the balance right and services know when to let go you nurture the very dependency you then criticise people for later in life. 

After a particularly heavy month of appointments, hours sat in Alder Hey car park and time off work we realised that both of us working would not work so Tony agreed to go part time and I realised that I probably could not continue working for the Local Authority that I may have to ‘do battle’ with in the future. I did not trust that they would not expect Lynn James-Jenkinson to be loyal above Emma’s mum. Emma’s mum will NEVER be compromised when it comes to Emma (or her brother and sisters). 

Kerry and Aidan took the calendar off the fridge one day and we went through it. We made a list of all the appointments and which ones felt like they were of benefit to us and Emma and which we didn’t think were. 

I then wrote to the Paediatrician – who told me that she co-ordinated the care for Emma (went down like lead balloon that, how to win friends and influence people…) – to tell her. We asked for clarity as to whether there was a genuine clinical reason, that we weren’t aware of, to keep going to the appointments with people we didn’t think directly benefited us. 

She was on that list because it felt like once every 3 months we went along and told her what all the other appointments had been doing, she put that in a letter and sent the bloody letter to us (and the GP), and we already knew all of that for goodness sake. 

The only people to benefit from that were the local off-licence because it took a couple of glasses of Pinot the night before to get ready and a couple the night after to recover. 

I will be eternally thankful to Eileen Kinley who was Emma’s Physio. Eileen knew how to work with babies and families. Eileen understood about postural care and how remembering simple stuff and supporting families to know why helping your baby maintain a mid line would REALLY help her in the long term It is entirely down to Eileen – and dads socks under her shoulders – that Emma is as physically able as she is today and it will down to Eileen when Emma goes on to live her dream at Dance school. 

I will also be eternally thankful to my dear friend Dene Donalds who helped Emma learn some breathing (Mindfulness) techniques to help her overcome the fear that grew in her for medical appointments – because there were so many. It took a long time but Emma is really good at recognising anxiety in herself and still uses these techniques today. 

Kerry and Aidan – maybe it was just Kerry though as I said I am not that kind of mum – were in high school -. Hillside High School in Bootle – when Emma was born. From day one, Emma was taken there and the teaching staff told to get ready “she will be coming here when she is 11”. 

Something they were reminded of very regularly until she went there in Year 7. 


Next week, we will be sharing Lynn’s third post – School. We know there will be something in there for everyone.

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