The Big 13

Sam Bowen talks us through her conflicted feelings as a SEND parent as her daughter approaches 13.

I’m heading towards – no scrap that, I’m hurtling, towards a big milestone that I’ve been brewing uncomfortable feelings about for some time. In some ways its perfectly ‘normal’ to be having these feelings but in others it’s not.

My daughter is turning 13 next month. My severely disabled, in many ways still babylike daughter is turning 13 next month. See? Not at all uncomplicated, is it?

Like many women who reached parenthood late, I’m also heading (and hurtling) into the menopause and the combination of her hormones rushing in as mine scuttle out, resembles an ill coordinated hockey cockey dance where all legs are either in or out at the same time. I often fall over emotionally speaking and I’m really not dealing well with post lockdown anxiety – that’s a whole other issue.

A mum and her daughter smiling for the camera together.

13 years also means me facing up to personal milestones in my journey as a SEND parent, it feels like time to take stock and figure out why I’m miles away from the comfortable acceptance many other people at this point in the journey seem to be. What did I do differently to them?

My ‘journey’ started almost immediately after Lucy’s birth when I was wheeled back to a four-bed ward, had the curtains whipped around mine and ‘othered’. My new born was whisked off to Special Care Baby Unit and a paediatrician loudly told me through a gap in my curtains, that she thought there was, “something genetically wrong with your baby” when I asked her what she replied, “I think she’s got Downs” – she then closed the curtains and left me to spiral into a morphine laced panic.

Nearly a decade on and I would use this encounter as an introduction to speaking at numerous conferences and training events which reached a global audience, mainly of museum and gallery professionals.

It’s been an effective device, a short sharp shock and a good example of how damaging  ‘othering’ and labelling is. As it happens Lucy does not have Down Syndrome, but that Paediatrician was not the last doctor to wrongly label her on visual appearance alone. Even if she was rocking an extra chromosome 21, that wouldn’t make her the same as anyone else who does. And that’s the point I bang on about on a drum that’s so bloody worn out now – need not diagnosis. Respond to the need as an individual just like you would to any other human.

I chose to pick up that drum to beat it because I literally didn’t know what else to do. I’m a fixer, a type A or a ‘Shaper’ to use Belbin’s personality traits.

Within a year of having Lucy – which I’m not going to lie, turned my life upside down, gave it a good shake and applied a leaf blower to it – I found ways to tackle problems faced by disabled children. At first it was designing a range of clothes for babies to wear during hip dysplasia treatment (which Lucy had been through) which was a raging success and became an international and award-winning business. I sold the brand and returned to my old career supporting museums and set about making them accessible to SEND children and families.

Five years on and I’ve now spoken to and trained several hundred people and created a self-help website guiding professionals on how to best welcome, support and include SEND. I even won a prestigious industry award for making radical change. I still feel empty.

It’s a lonely and isolating world when you’re shouting at it to become better. With all the campaigning and rubbing shoulders with disability activists, I have often felt like a complete charlatan and grappled with terms like the ‘social model of disability’ when, yes society’s ignorance causes us daily grief, but to deny Lucy’s disability isn’t part of her genetic makeup is bonkers.

I’ve felt guilty for being utterly fed up and sometimes frustrated with her disability – with not being able to do stuff for all of us. The endless cycle of meetings, appointments, letters, texts, blue light ambulance rides. The endless narrative that she’s got stuff ‘wrong with her’ started from the moment she was born and hasn’t stopped. It’s draining and psychologically very challenging to forcibly live a different life to the one everyone is telling you to live.

As a family, we bravely keep our heads up and stride out in defiance of disability, pushing Lucy in ever more expensive buggies up mountains on holiday to escape our life. We ignore shitty reality. We shut the front door on ‘that world’ to create a space of fun, mess and sensory wonder – or sometimes we are just in a beanbag heap watching TV and banging drums. Drums are ever present in my life!

As she’s grown older and therefore bigger, this ‘diversion tactic’ has become more challenging – I think we have realistically climbed and pushed up our last ever mountain, which is quite devastating. Lucy is changing in her likes and preferences like any other child growing into a teen. The baby type safe to chew toys no longer entertain her, but the more ‘grown up’ range obviously aren’t designed to be mouthed, which is the way she explores things. If I could ever find a manufacturer of rubberised musical instruments, I’d be sorted as we have nibbled our way through three full sized guitars – Jimmy Hendrix style.

Relationships and the natural course of growing up will skip the boyfriend mistakes I made. She won’t get drunk, experiment with drugs or get tattooed. She need not stress about having a bully for a boss or worry about earning enough for her next month’s rent. In many ways, Lucy’s becoming a teen should be far easier than my own journey although I have to push to the back of my mind, how vulnerable she is to risk from other people.

And yet. And yet, as the milestone approaches I ask myself why am I feeling so conflicted by it? Did I throw all my attention into making others change to ‘accept’ child disability as a diversion to coming to terms with my own’s? Why was making a bigger impact to challenge society easier than challenging myself? Why am I not one of those ‘accepting’ parents?

So 13 approaches, the balloons, party bag treats and paper plates are boxed up ready. The hall, entertainer and even an ice-cream van are booked. Cakes have been researched online. Invites sent out. To the outside world, I am ready, but telling you in a blog is as close as I’ve got to making peace with her becoming a teenager. She as always will tell me how to adapt with her own magnificent, energic confidence. By using her infectious laugh and not a drum.

 

Follow Sam on @makedoandSEND on Twitter, and check out her website at www.sendinmuseums.org 

If you would like to share your experiences with as a carer or disabled young person as part of the #SecretLifeOfUs campaign, please do email us at disabledchildrens.partnership@mencap.org.uk 

Emma shares this letter on behalf of her 8 year old autistic grandson Lincoln.

 

Dear Sir or Madam,

This is a short letter on behalf of my grandson. He is 8 years old and is Autistic. He doesn’t use words himself and doesn’t put a pen or pencil to paper or use a keyboard or keypad.

I do not use words, I am actions.
MELTDOWNS.
I cannot tell you any other way just how terrified and overwhelmed I am.
I try to run away because the NOISE all the noises!
Shoes onto pavement
Cars and buses, radios, doors open and shut,
Too many mingled voices,
Birds and barking,
Rustling plastic,
Echoing , vibrating Hurting Me.
I want to scream… I am screaming!

Trying very hard to become calm. I concentrate very hard and my heart beats so fast I feel sick.
All eyes on me. Now I feel you are angry with me.

The smell, all the smells.
Metal, petrol, dust, urine, sweat, perfumes, leather and denim, burgers, fried foods, coffee and meat.
I am spinning and nauseous. This is all too much.

If I opened my eyes and it had snowed, it would be all calm and clean and soft.
It would smell clean and fresh. I like soft, clean and fresh. A thousand sparkles landing gently on hair, nose, eyes and lips. Everywhere and everything. I feel it and taste it. I spin around and around and then stand ever so still taking it all in.

I don’t want to be in busy places. My hand hurts coz you hold on so tight.
I need to run, run where it is soft and green. Then I can lay on my belly and listen to the trees. I see a hundred patterns in the leaves and the grass. I feel taste and smell all the colours in the wind.

When I am trapped indoors I am very sad. Sometimes I hit myself and sometimes I hurt my sister. This is very bad. My sister is little and smells of cake and strawberries. I love her very much.

Soon I will be away from the town and the flats. I will have my own bedroom and a garden too. I will be able to run away from my mum and sister when the voices are hurting and it will be okay because I will still be safe.

Wish there were more safe spaces I could go to. Wish there were parks with more green with doors I can’t open and fences I can’t climb over. There is too much traffic around and I don’t see the path from the road when I am upset or just running.

Mum will not take me near a river or lake because she screams at me that I will drown. Don’t understand why I cannot play in the water. I am so drawn to it and I really don’t mind if it is freezing cold.

Mummy says we need big changes for us to go out and about coz I move 98% of the time and speak with actions.

Having a garden will be really good start for us. So a great big hooray and thank you for that and for taking this time to listen to my Nan.

Without the campaign by ‘The Children’s Disabilities Partnership’ my new home would not be happening.

 

 

Parent carer Helen shares her experiences of her son James leaving school, transitions and other changes.

 

Some people thrive on change and uncertainty, I’m not really one of those people. I like things to be reasonably well planned, I like to know where I am. But inevitably in life nothing stays the same forever so we have to learn to deal with change as it happens.

A big change for anyone is the time when they leave school. I was chatting to someone recently and was reminded of the uncertainty around the time leading up to James leaving school. It’s incredible to think that it was 7 years ago this summer.

A young man posing with his backpack.

 

July 2015.

James was due to leave his SLD school in the July after his 19th birthday. He had been at the same  school for 11 years. This was undoubtedly going to be a huge adjustment for him but also for me too as James’ full-time carer. When they are at school you know where they are going to be in terms of what time they go and come back home and how you can fit things in around them being out of the house. You have the term dates in advance and apart from the occasional snow day closure or sickness you can pretty much count on them being in school.

In the year or two before James was due to leave it all started to feel a bit uncertain. You know things are going to change but you just don’t know how that’s going to look and how it will affect your lives. Of course, there was some anxiety about how James would react to such a huge change to his routine too.

 

New Legislation.

A young man at a desk at school.

Under the old education system James had what was then known as a Statement of Educational Need. However, following the Children and Families Act in 2014 the ECHP was introduced. Education Health Care Plan. The intention behind this was to ensure that children and young people up to the age of 25yrs who had significant Special Educational Needs or Disabilities had their educational, health and social care needs identified and that ongoing support would be provided to meet these needs.

 

It had been our intention that on leaving school James may be able to attend college and we had visited a few local colleges with James. We had favoured one college in particular and they felt they could meet James’ needs. However, it was unfortunate for us that this was the first year that the EHCP had come into practice and quite honestly nobody knew what they were doing or really understood it in full. If James’ headteacher and the education dept didn’t know then what chance did I have.

 

Further Education?

Having undergone a full assessment, it became apparent that James did not meet the criteria for continuing in education. He had to have demonstrated that he was continuing to make good progress at school. At that time progress was recorded on the P scales. These scales are a set of descriptions for recording the achievements of students who have special educational needs and are working towards the first level of the national curriculum. So, it seemed that continued education was not going to be the way forward for James.

 

I have many friends whose children went through the ECHP assessment a few years after James. By this time the new plan had bedded in and both professionals and parents were much more aware of what was necessary to achieve the right outcome for pupils leaving school. James’ ex headteacher did actually admit to a friend of mine a couple of years later that ‘James slipped though the net.’ At the time I was upset about it but as they say, ‘as one door closes another one opens’ and we had to focus then on what James was going to be doing when he left school.

 

Look at your options.

A young man rolling onto his back in PE

We had very little support from the transition Social Worker so I set about finding suitable provision for James myself. I researched what was local to us and arranged some visits. James needs to have all his personal care done for him and so this became an issue as not all provisions had the necessary facilities to do this.

During the last year of school James attended various groups in the community as part of his transition for moving on. One thing he did was to attend keep fit classes at a local church hall along with service users from the local council day services. I arranged to go and visit that local day service. The staff I met were very nice and welcoming, the facilities were ok but what concerned me the most was that a lot of the service users were a great deal older than James.

 

For a couple of years before leaving school James had been attending a Saturday club once a month at a new local provision. This facility was set up by a couple of ex parents from James’ school who found, like I had that when it came to looking for day provision post school the choices were very limited. They had started a full time Monday to Friday day service along with the Saturday club and were also hoping to provide respite at a later date too. I visited here with James and what I found was that many of James’ peers attended. Kids we’d known for years on his school transport for example, there were lots of familiar faces, all young too. There is a large staff group and it’s all housed in quite a large building with lots of indoor and outdoor space.

 

Bringing it all together.

I started to formulate a plan of how James’ week Mon-Fri could look. Perhaps he could have the benefit of both worlds. I was also conscious that Susanne who has been James’ carer for many years was losing her hours with James as he wouldn’t be with her after school or in the school holidays. Susanne and her family have been such a big part of James’ life it was important to me that he was able to continue spending time with her too. With so much other change happening for him some continuity would be helpful.

 

I did have a bit of a fight on my hands because at the end of the day everything comes down to finance. Adult services really wanted James to attend the local council day service as this would be the cheapest option. But I dug my heels in. I argued that James needed variety and would not necessarily get this by attending the same day service 5 days every week. I know our children attend school for many years but they get lots of breaks and holidays and it does come to an end eventually. But this was going to be James’ life now for the foreseeable future for pretty much 52 weeks a year and I didn’t want him to get bored. I also argued that the council day service was largely used by older service users and that James was entitled to have the same opportunities to be with his peer group as other young people who leave school have.

 

Funding was agreed.

A young man smiling in a car.

The plan which was eventually agreed was that James would attend the council run day service two days a week which he does on Mondays and Tuesdays. Although James likes to be busy he does get very tired so on Wednesdays he spends the day with Susanne at her house. It’s a bit more of a chilled out day for him. Then on Thursdays and Fridays he attends the other day service with his peer group and friends he has known for many years.

This is how it has been since James left school and continues to be since his move into supported accommodation last year. There are obviously occasional day closures, staff training days etc but nowhere near as many as school holidays. It means if one service is closed he doesn’t miss a whole weeks activities because he has the other one to attend. He gets to do different activities at both and mixes with a different group of people. I feel that the two services offer him different stimulation and variety.

 

Preparing James for the coming changes.

In the lead up to leaving school James continued to attend activities with the council day service and Saturday club too. What it meant was that when James left school and attended his new day services both buildings were familiar to him. He wasn’t suddenly in a strange place. Also he was with staff and service users he had spent quite a lot of time with which was good for him but reassuring for me too.

 

As regular readers will know, I love to make an online book for James on Snapfish. Whether it’s a book about a special occasion he can look back on or as in this case preparing him for something that is going to happen. I made James a book about leaving school and filled it with pictures of his new day provision and talked about his new routine. Its been read very many times and still is 7 years on. He still likes to point out his friends and teachers.

 

 

So back to where I started…..change can be unsettling but if you do some groundwork and prepare well it doesn’t have to be too scary. Naturally there will be some anxiety and it was a strange feeling that last day when James came home from school. When facing change though I think if you acknowledge how you feel and share your concerns people will be supportive. Whether it’s leaving school or something else it’s good to express your feelings, people can’t help you if you don’t. Very often things don’t turn out to be quite as scary as we anticipated.

 

The Disabled Children’s Partnership’s #SecretLifeOfUs campaign aims to provide a platform for the experiences of families with disabled children, tackle myths, and encourage understanding. Email us to share your experiences. 

 

 

 

 

 

 

 

 

Emma, grandma and carer to Linc, shares her appreciation for teachers of disabled young people.

 

“The children are returning to school today after Easter break.

Hopefully they had quality family time, days out, special activities or even breaks away.

The teachers are also returning to the classrooms after days of preparations, co-ordinating with other staff members and planning the days ahead designed pacifically for our children and their individual needs.

In this present moment the teacher will be responsible for 8 children of different ages with a range of abilities and disabilities.

Thinking about the children I know of through our #SecretLifeOfUs campaign and how diverse the needs of the children are; puts me in awe, deep respect and gratitude for all the SEN teachers today.

As a grandma I struggle at times with communicating with my autistic grandson. His energy and determination, his mindset and willpower blows my mind at times.

A young boy with his arms up in the air playing.

Emma’s grandson, Linc

Teachers that work with my grandson understand him. They know what his strengths are, his likes and dislikes. They know exactly what he is and is not capable of at this very moment. His teacher is aware of every other pupil is his class to this degree.

The dedication, patience, kindness, strength and on-going training deserves a huge thank you.

Our teachers are incredible.”

 

For more blogs, stories, videos and more from parent carers and young people, check out our #SecretLifeOfUs campaign page.

 

Please do email us if there’s anything you’d like to share – whether you’re a disabled young person, carer, or have any other experience with SEND.