This is the post excerpt.
I’ve been inspired by many friends who have blogs discussing their hobbies and interests and have decided I am going to follow suit. Quite frankly, this blog will be used for a number of things but particularly for venting my frustrations about inclusion from the perspective of a parent of a child with learning disabilities as well as uplifting stories about my family, our little victories, in particular Millie’s inspirational learning journey as we potter through this thing called life.
Every Child Deserves the opportunity to have their own bike
It feels like quite a cliche thing to say “Every child deserves a bike” because having the opportunity to ride a bike feels like it is a very ordinary thing. A childhood right of passage even. Most of us can probably recall at least one fond memory of cycling with our friends and family. Playing outside at the local park; attempting to ride with no hands; holding the handle bars; bumping up and down the kerbs; doing wheelies (if you were really brave).
My daughter Millie requires a trike because she needs support to cycle, a large handle bar to help her move. She needs large wheels to ensure stability because she is unable to balance herself and she needs guidance to help her steer. Manufacturers make similar trikes to the one she requires for toddlers starting at the cost of £40 (in the lowest end of the price range) upwards and parents are able to order online or in store and so can use it pretty much instantly. Families of disabled children don’t have this luxury because our children are not catered for in high street outlets and I want to raise awareness of this issue in the pursuit of inclusion. In the hope that I can one day go to a bike shop and come out with bike for my child the same way every other parent can. I hope that this blog post will reach buyers, store managers, CEO’s and decision makers who are passionate about making sure every child gets to experience the joys of cycling. For Millie and other disabled children to get a bike we need to get an assessment and are then placed on waiting lists and then quoted huge sums of money and forced to wait months on the delivery. And by huge sums of money I mean it will cost over £1k for a trike for Millie and take a minimum of 12 weeks to produce. I am a bit salty about this because its 10x the cost of an average bike with a 3 month wait. There are grants available to help with the cost but these cause more delays and it takes a huge amount of emotional resilience to fill in the forms (that often require every detail bar a blood sample.)
We have visited countless stores, from Toyshops to large outdoor centres and it always ends the same way, with tears from Millie lying on the floor as I tell her that there are no bikes there that we can buy because they don’t have ones in stock that works for her body.
How do you explain to a disabled child that her needs have been forgotten about? Completely overlooked. In the 100’s of bikes that line the shop floor, not one single bike to represent the disability community. That’s a real shame isn’t it?
When we know better, we must do better!
Please get in contact with me if you are in an organisational position to be able to help make a difference for families like mine. Inclusion matters.
“Aren’t you entitled to respite? My sisters pals daughter who has a son with Autism gets respite. Yeah, he goes away for a weekend once per month so they get a break. It’s really good. You should look in to that……..”
I’m not sure what the general understanding of respite is but I can guarantee respite is not what you think it is.
In order to be eligible for respite you need to go on a waiting list for a social worker. When you have one of these you will have to go through an assessment that will go over every single part of you life with a fine tooth comb. If you didn’t have a mental health problem, this process will soon make sure you do. Corporate gaslighting at its finest, this assessment is designed to break you. This assessment will look at things like, if you have family and friends who can take on some of the care. If not, why not? Nice eh? Nothing like a good old form to kick you when your down.
The outcome of the report then goes to a panel and strangers who have never met you read through your struggles in black and white and decide on how many “hours” you are entitled to based on what your life looks like. This report is of course subjective, and relies entirely on your ability to communicate your needs as well as the ability of the social worker writing it. But when you are exhausted to the core and eventually awarded 4hours once per week after years of “fighting”, those hours don’t even skim the surface.
Oh and there are very little in the way of support providers so guess what? You are now going to become an and employer. Congratulations!!! There is a whole other set of skills you will have to learn on the hoof. And a whole other level of responsibility you now have. You are in charge of all the admin and organisation of said respite (but none of the control) so those 4hours you thought you got, aren’t actually 4hours, because you have admin to do and everyone wants a meeting with you to discuss how you will use your hours. And once it goes in the plan, don’t even think about changing your mind, because your not allowed to have a flexible life anymore, because your life does not belong to you. It belongs to systems and processes and panels.
Your life is held at ransom to goodwill and charity and there is very little you can do about it other than suck it up and get on with it.
Before I had my daughter I was naive. I just assumed that those who needed help got it. I didn’t anticipate having to beg, plead, cry for help to social work for them to say can’t “xyz” help you? Have you asked “xyz”?
You are expected to give up all aspects of your life to fit around your caring role. Thrust into a poverty trap. The work life balance is delicate to manage. I’m lucky I work, but that’s only because of my partner’s sacrifice.
Acute issues go away: they get better. Our issues are long term. They are deep rooted. My little girl will never get better and I will care for her until the day I die, but I’m being tortured along the way by reports that are long and drawn out, by services that are smoke and mirrors. I’m telling my story again and again and again and signposted round it circles. I always land on someone’s desk who says “it’s not my job”. It feels more than a fight for support, it feels like a fight for survival. Carers can’t get sick. It’s not a luxury we have. I don’t want to feel like a burden. I’m fiercely independent but love alone doesn’t fuel your body to be everything to everyone it needs to be. If my body could run on love alone it would never fail me. But it doesn’t and I can’t.
I am strong but I am broken. Yet, throughout my vulnerability I see with clarity. My voice is my strength, my stories will change the direction and form a path to salvation. Respite needs to be in abundance for carers. Accepting a poor quality of life normalises it.
Carers need respite
Our loved ones need digital passports.
Emergency care plans ( that work and are practical and not just reliant on the good will of others)
Access to carers services
The right to regular breaks. Daily breaks.
Hands on practical help and support.
We need access to the equipment we ask for because we need to be able to protect our bodies.
We need access to an ordinary life. We shouldn’t be expected to settle for less.
Social care is everyone’s problem. We will all need support from this service at some point. Don’t wait until you need this service before you demand better of it because by then it will be too late.
Are you a carer yet?
Crippled by pain, I lay in bed. My legs cramping, my chest is tight. Sweat is dripping from my head and my night shirt is soaking wet. My lungs feel like they are on fire as I cough and gasp for breath. I’m coughing so much I’m sick. Thick bubbling mucus. There is no food in my belly as I’ve been unable to eat. COVID has broke me. Everyone in my house hold has it but my body is the one that can’t cope. And My partner is left alone as I’m admitted to hospital for 3 days. He has to Care for our 2 children, one with a profound disability whilst he is also very sick. I’m helpless and feel hopeless. It’s the worst scenario imaginable for families like mine. It’s terrifying and traumatic.
My body can’t cope because it was already exhausted and run down due to lack of respite provision made available to my family. We have filled out forms, attended meetings and have had every part of our life scrutinised by strangers who go over the same questions again and again, forcing you to relive painful stories, pulling off scabs of vulnerability and making you question your own reality. It feels like begging for crumbs at a table. It feels like I’m drowning in a sea, swimming with weights on my legs and the rescue boat has arrived with only a rope that is too short.
Social care is broken. I don’t know why the service is called social care. It’s not social and they don’t care. It should be called “life gate keepers” or “social gaslighting gatekeepers association”- you know a name that matches the description of the service that’s provided. Making families beg and plead for support and go over their stories again and again is torture. In fact its mental abuse! There are too many cooks. Too many people trying to micromanage and control. Our social worker is lovely and kind but she is working from a toxic system with processes that don’t work for the families they are there to serve. It’s wrong on so many levels.
That’s numerous times now I’ve been ill and let down by social work. A few months prior I had to have surgery for precancerous tissue to be removed and we received no extra support despite asking. And now after 3 days being in hospital on oxygen we have been refused additional support again. Instead I’m told school is to be respite when we are out of isolation. How sick does someone have to be to get support? How disabled does your child need to be before you get the support you need? Carers are held to ransom over love. They are being pushed beyond breaking point. The whole service needs remodelled and it needs to be co produced by people who have lived experiences. Can’t provide 5hours respite but due to costs, but can pay the labour expenses of staff to fill in reports, organise multi disciplinary meetings and spend money on labour having meetings to tell you why you cannot have the support.
It’s not about support. It’s about control. It’s not about money, it’s about worthy. They say they can’t help, it’s not because they can’t it’s because they won’t. That’s the difference.
Carers are ground down over years and made to feel like their life has no value. We are put under strain to the point that the mental affects of trauma manifest in your body until they become physical.
So what is the true cost of caring? Because the only currency I seem to be paying is with my life. The system has got to change because it doesn’t work.
Everyone’s voice matters.
Can you imagine living in a world where hardly anyone understands you? How would you communicate your wants and needs? How would you tell a story? Tell your loved ones your hopes, dreams, fears? How would you tell your mum you HATE cheese on top of your spaghetti but you love spaghetti and you love cheese just not to mix it together? How would you tell your mum that you wanted noodles and rice and prawn crackers at the restaurant and not noodles and chicken that SHE thought YOU wanted? Without words?
This is the reality for many non verbal communicators like my daughter, who rely on people to listen to them with more than just their ears. Who rely on visual or tactile props to communicate their message.
I was at an AMAZING conference on Friday called Raising the Bar 3 where I listened to lots of amazing people tell their story and what they are doing to Raise the Bar in terms of access, health and care standards. You can read more about it here >>> http://www.pmldlink.org.uk
With that in mind I have decided to start a petition for a Inclusive Communication Public Action Plan.
I have a vision for a Inclusive Communication Public Action Plan and I need your help to implement it. Can you help me get the attention of the UK Parliament by signing and sharing this petition?
My motivation for creating this petition is a personal one. My beautiful funny, happy go lucky little girl Millie is a non verbal communicator. She uses picture’s as a tool help her communicate her choices. As a family we have worked hard to negate the restrictions this can mean when accessing the community around us. Millie has a communication book, uses a combination of sign, objects of reference, the odd word to communicate with the world around her.
This campaign seeks to resolve communication barriers by raising awareness of simple things that could be implemented to ensure that non verbal communicators have choice and opportunity in the world around them. I would like the government to pass a law that requires picture communication systems to be integrated in to the fabrication of society. By this I mean that all restaurants, places of transportation, sports and leisure facilities, museums, concert halls, education establishments, healthcare facilities, visitor attractions and commercial retail premises to have pictures to support communication.
Who benefits?
The UK has a population of approximately 65 million people.
Approx 11 million people in the UK are deaf or hard of hearing. There are 151000 BSL users in the UK
Approx 2.8 Million “Early Years”
Approx 850 000 people are living with dementia
Approx 40 Million tourists visit the UK each year
Approx 1.5 Million People have a Learning Disability.
It is evident from these general statistics that there is a huge proportion of the population who could directly benefit from having communication systems embedded into society. If all these core groups were added together the approximate total is 56.3 million people! And the benefit actually reaches further than this when you consider that family, friends and practitioners also will directly benefit from this.
This is a simple adaption that will help peoples lived experiences. It will help promote choice and opportunity. It will help a someone with dementia who can’t find the words maintain their independence. It will help non verbal Autistic people communicate with their families a bit easier for example helping ensuring families can dine together with menus that everyone can use!
If you own a printer you can implement this change straight away then please do it! It doesn’t need to be complex. It doesn’t need to be fancy. It just needs to be available!
If we design with disability in mind everyone benefits
I have a strong idea about the way that this should be implemented. Please do get in touch if you want to work with me making this happen and I will try by best to get back to you.
Please sign the petition here >>> https://www.change.org/p/uk-parliament-include-me-this-is-a-call-to-action-for-an-inclusive-communication-public-action-plan?recruiter=51443378&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition
milliesmovementforinclusion@gmail.com
***Please note that this email account will not be looked at on a daily basis.
Millie’s TUBA 1a diagnosis is very very rare and the very fact that she is here and alive is nothing short of a miracle! My beautiful, strong, determined tornado of a girl is my world.
The Tubulin protein is a very important structural protein and is part of the essential building blocks of the brain. It is a protein that is conserved across all mammals and changes to this protein normally means that a baby does not survive outside the womb, and for those who do survive the disabilities are wide and complex.
For Millie, this means that she lives with a range of brain malformations including Microcephaly. She has Hyper Mobility, Hypotonia, a Bilateral Squint, Scoliosis and daily seizures. She doesn’t communicate much with words, instead, her infectious smile and hearty giggle lets you know when she is happy. She takes your hand and leads you to the things she wants and huffs and puffs when she is sad. (Essentially she is a 2 year old in the body of a 6 year old.)
And As a parent, it’s been a steep learning curve. I have had to learn many new languages . I have become a master of reading body language. Interpreting eyebrow lifts, excited hand gestures. I have learned sign. Taught sign. Used PEC’s symbols and pictures, apps as well as augmented technology.
I have had to learn how to interperate medical and legal jargon. To understand how to negate services, and understand the pros and cons of medicine, and how the decisions I make on behalf of my child will impact her life, as well as ours.
I have researched diets, and medicines, alternative therapies.
I have attended meetings, appointments and courses.
My girl has been poked and prodded and measured or “examined”. Test after test. Urine, Blood, EEG’s. She has had tubes up her nose and in her arms. She has had medicines that have worked and medicines that haven’t.
Millie has taught me to re examine what is important in life. She has taught me to live in the now. Her love of life is infectious.
But she takes the rough with the smooth and she DOES NOT let this stop her from living her best life!
Millie is a sister, friend an artist and a gymnast. She explores the world through touch and movement and is curious about everything around her.
Today is Rare Disease Day. It’s a day for our family to take a rain check on our blessings and hopefully in sharing our story we help to raise awareness for all the little known rare conditions. For us, Rare Disease Day is about finding unity in diversity. Because even with all the many challenges TUBA 1a has brought for Millie, Millie has brought our family more joy than pain and more laughter than tears.
https://ghr.nlm.nih.gov/gene/TUBA1A
I’m Emma, mum to Kasie and Millie partner to John. I often go by the title’s of Kasie and Millie’s mummy, or John’ s missus. I’m a sister, friend, neighbour and auntie. Some people also refer to me as Miss Pauley, from my old business. And I often refer to myself as a gobshite (Noun: A endearing term of affection for a gobby member of family) . I am happily all of these names. Yet, there is one name I get called that i’m not comfortable with. It is a name bestowed upon me by service-land. It is one I struggle with. That name is carer.
Being a caring person with a good heart is part of who I am. I have a strong ethical grounding and a good moral compass. I try to look after those I love. I try to be a considerate, contributing member of society. But that’s not what being a carer is. That’s not what service-land mean when they refer to me as a carer.
“A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.”
I care for all of my wee family all of the time, I care for them all so deeply it hurts my heart at times. But despite this, i’m only considered to be a carer for one of them.
I don’t see myself as a carer. I see myself as mum. But a mum who has jobs and roles that are extended beyond the typical parenting role.
And this has lead me to question my identity, where does the line stop at being a parent and begin as a carer? Is there a line? And will I ever get the chance for some down time, to be just me again?
Carers week was 11th- 17th of June and I missed writing this post for it because life was simply too demanding and I didn’t have the time, the energy or the oomph for anything extra. (It’s now November and I am only just getting round to finishing off this blog post!) I have to ruthlessly priorities my time these days, and some days that means just simply getting through the day. Sometimes second by second, minute by minute. Winging it. Gliding.
When you have a neuro-typical child you go through the baby and toddler ages, overcoming sleepless nights, challenging behaviour, knowing it’s “just a stage” and that you can see it though because they will eventually “grow out of it”. You see all your hours of parenting pay off, as they begin to sleep though the night, learn to feed themselves, walk, talk and navigate the world around them. They begin to rely on you less and less. When you parent a non neuro-typical child these stages are significantly longer. And in our case we have had to accept that our daughter will never “get better” or catch up with her peers. She will in essence be in that toddler stage for life. And if I am honest that’s a pretty hard pill to swallow.
(A cute 5 year old picture of Kasie assuming the role of mum and enjoying pushing her baby sister)
For a long time I was waiting for things to get easier. To be able to just, almost, catch my breath. For year’s I was putting little things off. I will “just do that when the kids are in bed“, or trying to sit down and have my dinner hot when the kids are eating theirs. And it wasn’t working, because the reality is I can’t sneak activities, chores or anything else for that matter, in the in-between times, because there are no off peak times. There is no lull in activity. Yet, somehow for a while things got a little easier. After I overcome that tipping point of acceptance. When I accepted my life, the way it is. When I started to accept that I can’t fit all my “to do list” into the non existent nap time or expect to eat my dinner hot, straight from the cooker. Once I began to understand the essence of what I was finding difficult, the way I felt about everything began to change. I had to reach that peak though. I had to draw a line to understand what my boundaries are. I’ve had to really really get to grips with what is actually important, really getting to the bare bones and picking apart the all the little things. I have had to understand what my barriers are and how to overcome them. Because there is always a solution, and that solution becomes clearer once you face your fears and allow yourself a little bit of time to invest back into yourself. I truly believe that.
And so, i’m beginning to own my identity. I am beginning to own the names I have chosen for myself, and own the names bestowed upon me. I am giving myself permission to invest in me. Because I understand how much better I work when I’m not pouring from a half empty cup. And to those who need me, the power of that good investment is immeasurable.
It’s been a busy few months and as a result my blogging has been on a bit of a back burner. It’s a bit like waiting on a bus, none for ages then 3 come at once as I back track on all the campaigning work I have been involved in! Today, I was at the MDUK conference in Glasgow. I was asked by PAMIS if I could speak along with my good friend and fellow disability campaigner Rebecca Pender on the importance of Changing Places.
For those of you who don’t know Changing places are toilets for disabled people that are 12m2 or more with a bench and a hoist and a few more wee bits. This equipment is essential for people who need it, for their personal care requirements to be met with dignity.
Below is an example of a changing places toilet (photo from PAMIS)
So my part of the talk went as follows:
“My beautiful baby girl Millie is a whirlwind that lights up any room. She is a funny wee adventurer, risk taker, artist, teacher, sister and friend. She has taught me more in her 6 years of life than I learned in my whole life before having her her. She brings our family lots of joy and happiness.
Over the course of her life we have faced many health challenges. Her disability means that she has to wear a pad and naturally this requires changing. There are very few toilets where I can safely do this and lack of these facilities cause our family lots of distress. I am often forced to meet her needs by kneeling on a toilet floor. She can currently weight bare so we are in a more fortunate position in that it’s only my knees on the manky floor and not my child’s head. It’s only my back that being strained not my child’s body being met with a hard, cold concrete floor. Millie’s diagnosis means there is a possibility that she will regress, losing abilities. Losing opportunites to explore the world in the same way as her peers.
Changing places toilets are essential for families like mine. We need the space to change her. We need a changing bed. We need not to risk her already compromised health by exposing her to contaminated toilet floors. My child needs me to care for her. She needs my back, neck, arms, shoulders not to be hurt from lifing her. She needs not to run the risk of being dropped, bumped, bruised just for going to the toilet.
I often say that my child’s disability does not disable her, society does! I believe that more needs to be done for designing services with disability in mind. I believe in creating design solutions that means that everyone has access to everything all of the time. Changing Places play an essential role in breaking down inequality barriers. They are essential for families like mine.
So here I am today, here doing my part for raising awareness for Changing Places because I want to live in a world where everyones needs can be met with dignity and respect.
I do this by spending a little bit of time writing to shopping centres, sharing articles online via social media about their benefit as well as raising the issue with my Local MSP’s, councillors, and business owners.
Here are some useful links if you would like to know more about how you can get involved:-
http://pamis.org.uk/campaigns/
https://www.musculardystrophyuk.org
Rebecca and I outside taking a selfie with the PAMILOO
Does having an “Autism quiet hour” do more harm than good in our quest for equality and acceptance? Are the groups pushing for awareness and acceptance actually indirectly promoting segrigation of community and reinforcing ideologies that disabled people should be segregated, shunned from society?
I am often tagged in event’s targeted for special needs kids. On the whole I appreciate it. I love that my friends take the time to look out for us as a family. They know how hard it is at times to get out and about. It can be challenging, overwhelming and exhausting.
But there is a different kind of post circulating recently in the name of awareness. Big supermarkets and businesses are doing “Autism Friendly” hour and I don’t like it. It doesn’t feel right and has got me worried. At a quick glance, on the surface, it sounds like a business is being inclusive and doing their part to help, but in reality it is often done as a token gesture or for some good PR. A box ticking exercise with no real thought behind it. No cost to them and in fact probably quite profitable for them, because they are piggybacking off inclusion campaigns.
Recently, I seen a poster doing it’s rounds that Morrisons was doing an quiet hour between 9am and 10am. The post I seen was shared over 8k times, with well-wishers tagging their friends and family. Other posts on the page were lucky to get a few shares. THIS IS CHEAP MARKETING and PR for Morrisons. For what? Telling their customers their off-peak shopping times but under the banner of “Quiet Hour” targeted at the disabled/ autistic community. If this was done for ANY other minority group there would be an outrage. Yet, disabled people are some of the most underrepresented people in the country and it’s apparently acceptable to target them? I don’t buy the ” we can’t make meet everyones needs all of the time. YES….YES you can! You just have to problem solve it a bit better and take the time to consider a wider spectrum of needs. The trick is not to design for disability as an afterthought, but to design for disability as the forethought.
On the one hand I want to applaud Morrisions for taking the first step in recognising that they could be more inclusive, and that they could make a better more enjoyable shopping experience for all their customers. They have recognised that shoppers want less noise, bring lights, better access etc so why restrict these practices to just 1 hour? Why not completely over hall the whole shopping experience to make it more inclusive and better so everyone all the time?
(Seriously, 9am on a Saturday morning, who the heck is actually able to get their disabled kid ready for this time? I give my self a high 5 if we are ready before 11 at the weekend!)
If inclusion was at the fore front of this apparently well-meaning campaign, would it not be more useful to promote the use of google maps that monitor quiet and peak times so people can gauge for themselves if it’s the right time for them to be shopping? Why not extend good inclusive protocol and design practice to all the time? Because when you get it right for those of us who’s needs are more profound then you, you are going to create a better environment overall for everyone!
A ” quiet hour” at a specific time is honestly not progress. It’s segrigation of community. Looking at the comments on the thread….
” Great does that mean no more kids banging my ankles with a trolly”! (Said by one lady on Facebook)
Quiet hour does not raise awareness, it creates difference and reinfoces ideologies that disabled people should only shop at certain times……
https://www.thinkinclusive.us/inclusion-exclusion-segregation-integration-different/
(Image Credit to above think inclusive website- also further reading there)
If my kid had a melt down at 5pm at the shops because I needed bread and milk, would society see me as the problem for shopping out with our allocated time slot?….. Honestly, it’s a slippery slope. ….. Not wanting to talk history but it’s a clear example of segregation at it’s most extreme…. Hitler made Jews wear a yellow star and they had a curfew, they were only “ allowed” out at certain times…. It reinforced stigma, and acceptance that these people were of less value to society and that their needs and rights didn’t matter as much! This was worked on bit by bit, until it became “normal”. It didn’t happen over night.
I think they need focus on tackling the proper issues here. Better design, more awareness, better protocol and training. We don’t want an token hour. We want acceptance, better design and inclusion! We need changing places and dimmer lights, more thoughtful layout, good text, less noise and bright lights. We need staff to be trained to recognise people who may need some help and how to support them. Get this right and you will create an environment where people want to shop. Get this right and you will retain your customers who feel comfortable when they shop with your business. Try to GET IT RIGHT FOR EVERY CITIZEN and the rest will fall into place!
It’s not fucking fair and it’s by no means legal.
Thankfully she can at least attend her gymnastics club who are beyond amazing with her and have been amazing at being fully inclusive. See previous blog posts about their amazingness.
P.s.s
Some links that may be of interest.
https://www.gov.uk/guidance/equality-act-2010-guidance#overview
Millie's Movement 