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.
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”.
“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…..
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….
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.
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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Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.