Category Archives: motherhood

The Promenade

When I was 17, my mum took me to a prom concert at the Albert Hall. Being from Devon, we made a day of it; she took me to see where she went to college, bought me a t-shirt from some sort of brown paper bag, organically woven, rustic varnished floorboarded shop, you know, the sort that you only find in London (or on Gandy Street in Exeter). I wore it a year later, when I went to college. She’d got us seats, right at the front. I remember watching, fascinated, as the percussionist sweated through the soundtrack from a TV show, gaining a round of applause, all to himself. My uncle, a long standing friend of my dad’s, dashing off to get us drinks in the interval, the race to catch the last train home. A hot summer day that sits in my memory, part of my cultural upbringing.

I’m not quite such a fan of theatre as my parents, it must be said. While my childhood was full of visits to the Northcot, Plymouth Theatre Royal, the Haymarket, my own children are much more schooled in the way of the castle and cathedral, seasoned visitors to museums and Site of Historical Significance. This is not to say that theatre and musical culture isn’t something we deem to be unimportant; just that, for us, it is more difficult.

There’s something about the darkness, the tension, the are they pretending or are they real that turns what should be an enjoyable experience into something that…isn’t. Rather than pleasure, it so easily becomes struggle. An attempt to stay rather than participate. Apart from anything else, taking a family of five to the theatre or to a concert isn’t cheap, and certainly not if you add in the cost of transportation and time. For a long time, it hasn’t been worth it.

But last year there was a change in our circumstances. We moved house and suddenly, the idea of going to London for a show wasn’t quite such a pipe dream. For some reason, I can’t for the life of me think why, I made a discovery. A prom concert, something that was impossible for the likes of me and mine became something real. Relaxed. A lunchtime performance, lights on, a social story, break out spaces and hand dryers turned off. Even a short video to show us where to go and what to do. I spent much of the performance with the sort of lump in your throat and moisture in your eyes that won’t quite let you speak. I can’t have been the only one. The mother who chased her son across the stage; I recognised her quiet sense of determined desperation. The girl the conductor gave his baton to so that she could lead the orchestra from the pit, conducting a piece she knew well and loved, she still has the power to call an unfathomable emotion from the well-spring of my heart.

Without that experience, the rules relaxed, what was happening and what it meant spelled out clearly, in a straightforward, no nonsense way, even down to the musicians, wearing different coloured t-shirts according to which part of the orchestra they belonged, we would never have been able to go again. Because last week, that’s what we did. We gathered up an even larger number of family and off we went, access lines to railway and hall called, special seating arrangements for disabled guests made.

As I sat there quietly, lights dimming, waiting for a fantasy, an imaginative weaving of music and movement, words and song, to start I thought about how much it is assumed that we, the audience, will understand. How much it is assumed that we, with no preparation, no explanation, will be able to do, how we will be able to bring together, from the snippets of our experience, to make an evening at the Albert Hall a success. A children’s performance – and a very good one – a serious introduction to some serious classical music. An important addition to a cultural upbringing. A step on the road towards something with even less support for understanding.

I don’t know though. The one that went before. The bounce. The unpredictability of the audience. The love and joy at sharing their musicianship that came from the orchestra in waves as they swapped places during the Soul Bossa Nova, how we sang along to ‘Happy’ (sung by one of the Strictly singers). There was a real-ness to it, a raw power to the performance of disabled children from a special school who played alongside the professional orchestra. There it was, almost touchable in its intensity; the knowledge that music isn’t simply a matter of ‘the best’, but is an experience that should be shared, and that the sharing goes both ways.

Advertisements

Consultation Response

I thought you might be interested in the response I wrote to the Education Select Committee on how the 2014 Children and Families Act is working out from my perspective.

Obviously, as I have responded as an individual, I have a particular view that is coloured by my personal experiences, but I do wonder how much of it I share with others, both professionally and in my private life.

Anyway, here is my response – edited because it is long, and because I am not quite sure what the rules are about publishing it in a different place (so I have made it slightly different ie. shorter!). I am sure that there are more things that could be said and recommended. I’d be interested in your thoughts.

  1. The assessment of and support for children and young people with SEND
  • It remains that case that Local Authorities carry out both statutory assessments and award EHCPs while making difficult funding decisions. This means that there is a conflict of interest.

Recommendation: The role of the Local Authority as both assessor and granter of funds must be reassessed in order to remove the conflict of interest.

  • The assessment of children and young people with SEND, rather than acting as a means by which ways to support learning can be identified, acts instead as a gatekeeper. This is illustrated in a number of ways, from access arrangements to EHCPs, including access to benefits and social care. Without certain diagnoses, it remains the case, despite the Graduated Approach/Pathway, that certain support cannot be accessed.
  • Due to the constraints of running two systems (Statements and EHCPs) and set against a backdrop of austerity measures both locally and nationally, it is questionable whether assessments are undertaken by multi-agency professionals such as Educational Psychologists at points in time other than transformation to EHCP or in the initial stages of statutory assessment, prior to the granting of an EHCP. This can mean that information, upon which the professionals reviewing any plan are relying, can be considerably out of date and therefore of limited use.
  • Access to specialist assessment is also limited. Many parents resort to paying for private assessments. This means that children and young people from poorer backgrounds are not able to access the same level of assessment. This also means that professionals question the validity of private reports, suspecting that those who privately seek and pay for assessments must therefore have paid for the desired results. This is not equitable or fair.

Recommendation: Access to specialist assessments must be equitable and fair. It is not fair that some parents are paying for private assessments, and that these are disbelieved by professionals.

  • Support for young people is variable, with some schools doing an excellent job and some not. Excellent inclusive schools act as ‘honey pots’ for parents and their children. Some schools operate a ‘soft selection’ by implying that SEND children are either not welcome or that other schools do a better job with SEND than they do.
  • Access to specialist support is limited. Educational Psychologists, for example, have limited time to spend on supporting colleagues as they are busy with statutory assessment. In some areas, support from specialists is a ‘traded service’, in others, the Local Authority provides SEND services, such as advisory teachers. However, whether schools are able to access support as needed in order to provide early help is questionable.

Recommendation: Access to specialist support must be equitable and fair. Any moves towards an increasing system of MATs must be considered in the light of SEND support.

  • An open Graduated Approach/pathway means that there are many systems at work at any one time, with some Local Authorities using ‘My Plans’, others IEPs. There is no standard pathway for schools to follow, and no standard template for Local Authorities to use. This means that plans such as an EHCP can be confusing rather than clear for professionals, families and young people.
  • This confusion increases the likelihood that SEND ‘paperwork’ can be seen by professionals as an administrative exercise, increasing workload for teaching staff and the cause of stress for Local Authority case officers, leading to poor plans which can be effectively ignored by the staff who work directly with young people.

 Recommendation: One system for SEND documentation nationally, with proper training for those working within the system, will help schools and Local Authorities to collaborate and improve their service for SEND children and young people.

  • Children on ‘SEN Support’ are not protected by a legal framework. Only those children with an EHCP are protected in this way. This means that it is very difficult to hold schools or Local Authorities to account for the way that they support these young people. There are far more children and young people on SEN Support than those with EHCPs.

Recommendation: Children and young people on SEND support must be protected by a legal framework.

  • However, while a legal framework appears to allow for accountability and transparency, it is the parents of disabled children who are forced to hold schools and Local Authorities to account. They become reliant on forming positive personal relationships with professionals with whom they can be drawn into conflict over provision for their children. Where positive relationships do not exist, parents are pushed into problematic categories which themselves hinder effective collaboration. Holding a school or a Local Authority to account is an exhausting activity and can have a detrimental effect on the wellbeing of families who are already under pressure.

Recommendation: Accountability must rest between schools, young people, Local Authorities, parents and government. It is not fair that parents of disabled children must hold schools and Local Authorities to account as individuals. It is wasteful and costly. OFSTED must play a role in holding schools and Local Authorities to account for SEND provision by both inspecting Local Authorities regularly and ensuring that SEND is always part of a school inspection.

  1. The transition from statements of special educational needs and learning disability assessments to education, health and care plans
  • The transition of Statements to EHCPs has been difficult for Local Authorities to manage, especially when sent against a backdrop of cuts to local services. This has meant that some Local Authorities have not been able to complete the transition by the deadline, and others have resorted to measures such as outsourcing to independent EHCP writing companies or simply copying the Statement over to an EHCP. This is not acceptable.
  • It can take a long time for EHCPs to be finalised. This means that in the interim period, staff working with children and young people with SEND are forced to do so with little or outdated professional advice. This means that the likelihood that the statutory document, when it eventually arrives, will be ignored and characterised as useless, out of date or unhelpful, is increased.
  • As EHCPs are subject to statutory time scales, the dates at which they are issued is significant. Coinciding with school holidays such as Christmas or the summer break is unhelpful to families and SEN caseworkers. Planning timescales needs to be properly and thoughtfully carried out, with the needs of children and families at the forefront, rather than the Local Authority.
  • When preparing assessments for an EHCP, professionals consult both the child or young person and the parent, usually their mother. This means that the same questions are asked of the same people multiple times. Where a child has health or social care needs, the requirement to answer more questions and attend more meetings is increased. This impacts on parental, usually mothers, ability to work. Professionals, subject to statutory timescales, can unwittingly pass on the pressure they are working under to families. This is not acceptable.

Recommendation: The systems for producing or annually reviewing an EHCP must be reviewed, in order that Local Authorities understand the negative impact they have on the families they serve.

  • It can be very challenging to extract useful information on what the future hopes of a disabled young person might be, especially if they are very young or if they have significant learning and communication difficulties. Questions about the future can be difficult or distressing to answer, especially if the young person has a severe or life-limiting condition. There is little support provided for parents; it is possible for questions such as these to damage rather than support the wellbeing of families.
  • Support for parents in stating their views is, in my experience, limited to a single piece of paper which does little to allow for an exploration of their knowledge of their child or give their views. This is especially the case where parents also experience learning difficulties or have a problematic relationship with schooling, based on negative experiences from their own childhood.

Recommendation: The structure of the EHCP process, with its relentless focus on preparing for adulthood must be reviewed. Young people with disabilities must be given the same respect as the typical population, and access an education that helps them to fulfil their own aspirations, at an appropriate time.

  1. The level and distribution of funding for SEND provision
  • Local Authorities have been required to make considerable savings in expenditure. Local Authorities have restructured and reduced services, and the motivation to limit the number of EHCPs has increased.
  • Local Authorities and schools are subject to a new, fairer funding formula. This means that while resources are distributed more equitably nationally, there is less flexibility to respond to need locally.

Recommendation: Funding for SEND needs urgent attention. Local Authorities must be able to respond to need as it appears locally.

  • School budgets are increasingly squeezed. This means that school leaders are forced to make difficult decisions regarding staffing, in particular Teaching Assistants. While the use of Teaching Assistants for supporting SEND children and young people is not without its difficulties, this has a disproportionate effect on those children and their teachers, who thus come under added pressure.
  • However, more money for SEND children and young people does not necessarily translate into better or more effective provision. Long standing attitudes and practices must be challenged through a programme of reformed accountability and training.

Recommendation: Local Authorities must be held to account for the way that they spend money for SEND. There is no improvement to be had by simply increasing funding. Any increases to funding must be done intelligently.

  1. The roles of and co-operation between education, health and social care sectors
  • While being an excellent idea in theory, the reality is that much of the work falls upon SENCOs, who are working in diverse situations, from full time leadership to squeezing in the role to a Friday afternoon. The role of the SENCO is subject to considerable flexibility and change.
  • Education, health and social workers are all professionals working under the pressures common to those in public service in challenging times. Finding time to meet to discuss SEND children and young people is difficult. Understanding the needs of each other in terms of producing a workable EHCP is difficult, especially where there is no uniform or standard way of communicating or setting out a young person’s requirements.
  • The role of social care can be problematic, especially where the language and assessment forms cross over between disability and child protection. This crossover can be ill-understood by education and health professionals and increase the levels of stigma falling upon families and young people attempting to access the societal support to which they are entitled. This can mean that families who do not wish to have their lives scrutinised in an intrusive manner failing to access support.

Recommendation: Social care for disabled young people must be reviewed, and the information gathering process divorced from the processes of child protection. A new language of social care for disabled young people and their families must be developed in order to reduce both stigma and levels of intrusion for families.

5  Provision for 19-25-year olds including support for independent living; transition to adult services; and access to education, apprenticeships and work.

  • Provision for 19-25 year olds has seen an increase in number of EHCPs maintained by Local Authorities, with associated costs, in an era of cut backs to funding.
  • There is an emphasis, from Year 9, on ‘preparing for adulthood’ in the EHCP, requiring young people and families to make decisions and declarations about what their future career choices are from age 14. This is a difficult thing to do, as all young people are subject to changes in expectations as they grow up. It is a concern that SEND young people may find themselves on a pathway that reflects an earlier understanding of their future, rather than allowing them time to mature, as in the typical population.
  • A lot of time is spent investigating what young people would like to achieve and their aims for their future. This is a pointless exercise if options for them are limited to particular courses, where they are funnelled down a one-size-fits-all pathway to a life of café volunteering and charity day centres.
  • There is little information to parents and families about post-19 options for further education for SEND young people. The onus is on parents, who are already under pressure, to investigate options, many if not most of which are private institutions, such as National Star College or Foxes Academy. This means that parents and families must be prepared to appeal to Local Authorities to allow their young people to take up a place.
  • FE Colleges operate under a different ethos, different systems and timetables compared to schools. This means that, due to an understanding of a young person as an emerging adult, information for parents and families regarding post-19 options is not as effectively shared as it could be.
  • Where options for post-19 education and training is private or independent then there is a perverse incentive for Local Authority professionals, who are required not to spend excess funds, not to share information with families and SEND young people.
  • Where a young person may not yet have attained certain accreditations by age 19 it could be characterised as a failure to progress and a reason for a Local Authority to cease an EHCP. This does not give disabled young people the opportunity to develop their skills or further their education so that they can participate in the economic and cultural activities of the communities in which they live. A learning disability, such as Down’s syndrome, does not mean that a young personcannot learn; rather, it is that learning takes a longer time.
  • FE Colleges operate under different timetables to schools. This means that a ‘full time’ college course may be three days a week. The day may be a shorter day. The terms may be shorter and holiday periods longer. This means that a disabled young person aged 16-18, compared to a typical young person at school, is accessing less education and training. This also has an impact on the ability of parents to sustain the ability to work and make a contribution of their own and they must access social care or become full time carers themselves.
  • When a young person has access to a suitable education and training up to age 25 it is more likely that they will be able to participate fully in their community, make a contribution to it and fulfil their own dreams and potential, leading to better mental and physical health and wellbeing for the individual and lower costs for the state.

Recommendation: Provision for young people aged 19-25 must be urgently assessed. Existing providers must be consulted and collaboration with young people and their families encouraged in order to find imaginative solutions. Failure to progress  – or failure to provide – is not a good enough reason to cease an EHCP for a disabled young person.

Capacity

When I was a little girl I got involved in stuff a lot. I wouldn’t say that I was a joiner-in particularly, but when I look back, and count up the activities I did as a young person, it comes to quite a lot, especially when you consider I grew up in a Devon valley ten miles away from anywhere. For a small village, there was a lot going on, from amateur dramatics (adults and children) to gymnastics. The only fly in the ointment (for me, anyway, other children had differently inclined parents) was that if it didn’t happen in the village, it wasn’t happening for me. Hence, any dreams I had of being an ballerina or ice dance champion were dashed.

I started gymnastics when I was six or seven. As it was not long after the end of my four month hospital stay and I was a bag of bones with a red-raw operation scar that went half way round my back (still does, but it’s not red-raw) my parents were, understandably, somewhat anxious about it. I was put in my sister’s group, and she took care of me (or, as I saw it, bossed me about and made me be her partner – she took her role seriously, I guess), and made sure I didn’t hurt myself or wear myself out. I kept going until I was about 12 or 13, my lack of strength preventing me from being much good, but not from enjoying myself thoroughly, even though I could never manage to land on my feet after a handspring and my walkovers went one way but not the other.

Am-drams were similarly long-standing. One of my earliest memories was a rehearsal in the back room of Mrs Hughes’ house (she had so many children, I was never quite sure who they were or how many). I had somehow found myself in the group that were somehow baddies. I burst into tears and had to be moved, even though they came good and won out in the end. Costumes always seemed to involve nylon tights (yuck) and backstage was a wonderful gloryhole of rooms stacked with trestle tables that must have been born before the war. My favourite role was ‘Punch’, where my friend Kay and I got to hit each other with pipe insulation. The worst was when I had to wear an itchy leotard that was supposed to be my friend Carla’s costume.

The clubs were always filled with the same people (we all had similar parents, apart from Sophie, who gave up gym for dancing). Amy came with me to gym and drama. Kay to drama and Sunday School. My mum used to run the Sunday school with Mrs Hughes (who ran the Junior Players) and Mrs Freshney (who ran the holiday club with Mrs Hughes andmy mum), which meant that I didn’t have much choice in going or not (my dad was the man who Washed the Car on Sunday mornings) (not that I minded, I hasten to point out, I was more than happy to go). She used to make the booklets by spreading the individual pages out all over the sitting room floor. Kay and I used to giggle together, and I remained fascinated by the Chinese-style wallpaper in the vicar’s toilet for years, that and the open cistern, for years.

Actually, now I come to think about it, the reason I got so involved was no doubt directly related to my parents. My dad was on the organising committee of the gym club AND the PTA (until he fell out with the headmaster over the spelling of ‘barbqueue’). Along with a go-getty set of parents who ran the sort of clubs they knew their children would enjoy, they provided for us a range of out of school activities that certainly kept us busy and enriched our lives at the same time. When it came to my turn, and my children started nursery and Sunday School and football and scouts, naturally, I thought that I would do the same.

Except, I didn’t. I volunteered for the committee of this, that and the other, and even went to a few meetings, took my turn with a few teas, but, somehow, I couldn’t keep it up. At first I thought it was the new baby thing. Having three young children saps the energy of the youngest and fittest of mothers, so I thought it might be that. Next, I thought it was the fundraising thing. I have mixed feelings about fund raising (and very firm views on cake sales), or meetings and endless circular discussions. But, somehow, other women with more children than me seemed to manage. Other women who were equally busy, or impatient with group decisions seemed to get along just fine. They ran the committee and baked and sewed, raising large amounts of money for a variety of projects as they went along, cheerfully giving of themselves to the community and I…couldn’t.

It took me a while to figure it out. It took me a while to discover things like ‘mental load’ and capacity and how this is different for everyone and how when there is disability in the family, everything is magnified.

So now, when I see something about inclusive church, or business start-ups for learning disabled people, or personal budgets or anything else that sounds like a great idea if only it happened near to where I live, I smile sadly to myself (or scowl, depending on which side of the smile you happen to be) and sigh and know that what the answer will be to any number of good ideas.

‘Here’s an email address.’

‘Here’s a website.’

You make it happen.’

And, like every other time before, I drift away, disappointed. Having a good idea is great and all, but unless you have other people around you who have the capacity to turn your idea into something real, unless you have someone around who can make it happen, that’s all it will ever be. Without capacity, it will only ever be a pipe dream.

Posts for World Down’s Syndrome Day 2018 #WDSD18

With the hashtag #wouldntchangeathing (see,  I can spell it right in a blog post) taking the internet by storm, I thought I’d put together a post for you with my favourite posts about life, and love, with Down’s syndrome in it. Sometimes I have managed to write something for the 21st March, sometimes not. They might not be the posts with the most hits, but they represent, for me, what I’ve been trying to articulate about life, love, education and Down’s syndrome. Some of them are old, some of them are newer. A fair few of them have an educational slant. Quite a few of them have nothing to do with having a baby, for the simple reason that I become very tired of the link between Down’s syndrome and termination. Life goes on; and it is good.

Enjoy – and I’d love to know which ones are your favourites.

In no particular order (and certainly not a top ten, because I couldn’t decide on just ten) they are:

I never thought it would be me

A cause for love

Down’s syndrome Awareness

Downer

Out of the Ordinary

Olympians 

The unknown mother

Hope for the Future

Giving up

The Down’s syndrome memo

In my own words : Sam tells us about the things that are important to him.

What not to say

And for TES : Children with Down’s syndrome are entitled to a mainstream edication – just like everyone else

Girls Just Wanna Have Fun

When I was about 19, I went out for a night of karaoke with friends at a local nightclub. Although I’ve done a lot of singing in public in my time, karaoke was new to me, but, ever the performer (I hesitate to write ‘show off’ – I really do try not to get too up myself), I chose a song from the catalogue and signed up to the list without a second thought (I’ve always been a bit overconfident on the singing side of things, comes from my early childhood experiences when I was constantly being called upon to Do The Singing bit in school shows, church and amateur dramatics). For my turn, I chose Cyndi Lauper’s ‘Girls Just Wanna Have Fun’ and, I remember, I sang it to much applause (afterwards, when I went to the loo, I was accosted by another young lady who, rather aggressively I thought, asked me if I was the one who had been singing earlier; when I rather nervously admitted it was me, she told me I had been fookin’ ace – I’m taking that as rapturous). I remembered the experience when I was out in the car earlier today and it came on the radio (an expedition into the cold and rain in search of Forgotten Items From the Supermarket). It made me smile.

My friends and I, when we were at College (we were 17 and we thought we were the bees knees) used to request this song regularly when we went out to discos (a regular occurrence); we’d jump on to the dance floor in our Doctor Martens and bellow the words to each other, bouncing with the joy of being young and brave and having the world at our feet. We’d sing the lines ‘Some guys take a beautiful girl/and hide her away from the rest of the world/ I wanna be the one to walk in the sun/ cos girls just wanna have fun’ and vow that we would never put up with the sort of nonsense from our chosen partners that would have us stuck in the house being subservient. We were feisty, and determined.

As I drove along the slick streets, brown with the slightly thickened ending to raindrops, I turned the volume up and sang along, happy to be diverted down memory lane for as long as it lasted (I had taken the precaution of writing myself an actual list before I set off from the house, I thought I would be safe), remembering the days when I was younger and thinner and much, much fuller of energy. The younger me isn’t so different to the older me I thought; I’m still determined never to be shut away, an adjunct or an add on to someone else. It’s just that back then, I thought it was personal. I thought it came down to the person you chose as your life partner.

Now, though, I know different. I can see that this shutting away, this turning of a woman into some sort of silent trophy, or idealised image of supportive womanhood, or motherhood, or whatever else it is that women are supposed to represent or do, is not so much, not in my life anyway, personal and private, as systemic.

R thought I was going on a bit, but when he found that he was the one who had to curtail his working day in order to meet the kids from school and damage his career prospects (and I don’t mean extras, school events such as assemblies or school shows or sports days or anything like that).  Not that schools are in any way the same as places of child care, but dropping everything at half-past two in order to make it to the school gates for three does kind of cut in to your day. And, when you add in the magnifying effect of caring for a disabled young person – right at the point when you’d think things would be getting easier in the school run department you find out that it is actually worse, what with the even shorter educating day at college and the difficulties in finding the sort of care support you actually need; not for S the wander round the shops with friends that I used to do, while I was waiting for the bus. Holding down a part-time job, or even working at all, becomes increasingly challenging the longer I am in this game, and I haven’t even begun to write about health or social care. I’m lucky to be able to work the way that I do; I don’t for one minute think that my working arrangements are the norm. Employers pay you to do a job, and if you aren’t there, because you have to share the caring load, they will look for someone else who can. Part-time leaders? I’ll believe it when I see it.

I don’t know about you, but today, as I consider the opportunities I might have had, the chances I’ve missed to make a wider contribution, to effect a bigger, direct change in my chosen field of education, Cyndi Lauper, and her bouncy, buoyant, rebellious song doesn’t really do it for me any more. Yes, the personal is political, but now, it’s more. It’s bigger than me and my choices. Now, today, I might have a reminiscent singalong in the car, and smile at my youthful innocence, but tonight, when I do the washing up, next week, when I sit on the train, hurtling though the early morning chill to London, now, when I sit here, editing this post and considering what it is I am trying, so clumsily, to say, I will be, I am, choosing a different song. In so many ways, I’ll be singing, ‘what about us?’