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.

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