The Princess Party

On Friday afternoon it was just another ordinary school classroom. Twenty four hours later, it had been transformed into a magical grotto full of light and colour, music and balloons, a candy cart and the sweet smell of cake. A wonderland fit for a princess. My princess. It was finally time to celebrate her 21st birthday.

And celebrate we did. With plenty of music and dancing, a gorgeous cake, family and lots of lots of friends, old and new. There wasn’t even time to take many photos: we were all too busy having fun.

(Most photos have other children in them so cannot be used here)

Why a school, you might be asking? Why not a swanky hotel? Well the school is home to the Rainbow Junior Arch Club, so it is familiar to B and has everything she needs, including a Changing Places Toilet. It meant all the children from the club could easily attend, as well as many former club members who are all grown up now, just like B. And finally because the school said yes to my request and I am very grateful to them for that.

As I wrote last week, with everything else going on at home, I could not have made this happen alone. Once again I asked for help, and once again my friends responded. I won’t name them on here, but they know who they are. And I hope they know how much I appreciate everything they did, from finding my daughter’s costume to making the invitations, to decorating the room and making sure everything ran like clockwork on the day, so I could spend the time  with B, making sure she had the time of her life….

It’s an afternoon I will never forget and the best reason to be cheerful I’ve had in a long long time.

R2BC at Mummy from the Heart 

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Celebrating carers who always put others first is a dangerous message

Once again I’m seeing red at the headlines around the Carer of the Year Awards. Always putting others first is not a good long term strategy. I know women who’ve died young because they were too busy caring to get their health needs met, let alone anything else. If you’re a carer for life, as I am, you have to look after your physical, mental and emotional health in order to keep caring without burnout. But these constant media messages about selflessness put huge pressure on carers not to look for help, and relieve society of the guilt they feel about not offering it — with some exceptions, of course.

As I am totally overwhelmed right now, I am going to recycle another old article, that says a bit more on the same subject, with apologies to the organisers and to those who do enjoy these awards.

When you become a carer, everything changes. Not just your own life, but society’s expectations too. No matter what you were like before, you are immediately obliged to take on saintly qualities and become endlessly patient, loving, energetic, unselfish, undemanding and uncomplaining, with a beatific smile permanently plastered on your face. Don’t believe me? Look at the Carer of the Year Awards. Now obviously I have huge admiration for the winners, they manage the most challenging situations and care for the longest number of years. But what do these awards say to the rest of us?

Keep your head down, keep caring and if things get really tough, you might get a day out at an awards ceremony in 30 years time.

Don’t complain, don’t look for help, there’s many people who are much more deserving than you.

You made it through the day? Congratulations on “surviving”.

Having special children makes a family special (well actually it’s made me cross, fat, sick and tired).

You think your life is difficult? Well guess what, it’s going to get harder and you will still be expected to keep going.

“I’ve learned that you can keep going long after you think you can’t.” Except when you actually can’t.

Yep, these are the messages that we hear all the time. They may help carers to keep going, they may find them inspiring. I understand that, I really do. But sometimes they just make me feel like screaming…

In the words of the song, Is That All There Is?

Is getting through another day all that we have to look forward to? Well I think that carers deserve better than that. I want more, both for me and for the other carers that I know. Somewhere out there are carers whose lives do not resemble those of the award winners. I want to hear about them.

Where are the stories of carers who have made a conventional success of their lives? 
Who have careers, who set up businesses? 
Who live in nice homes, enjoy hobbies and nights out, have great respite?
Whose children are settled in quality residential care, and who don’t feel guilty about it and are not ashamed to say so as they know that they’ve made the best decision for their family.
Who go on holidays, for goodness sake? 

Yep, maybe they needed a lot of help to achieve these things. So let’s celebrate the people who helped them. The services that make a difference. Let’s tell the world that many carers need that help, very very badly. They are not bad people. Everyone has a breaking point. Congratulations if you haven’t reached yours yet. But do not judge those who have. It could be you tomorrow.

 

 

What I would tell that frightened new mum of a 26 week baby

I know you’re shocked and stunned, I know this seems completely unreal. I know you think this is a nightmare and you’re going to wake up and find that you’re still pregnant.

Preemie, #WorldPrematurityDay , 26 weeker,

You need to know. This is real.

That tiny scrap attached to tubes and monitors that ring and beep and flash. That’s your newborn baby. And yes she’s fighting for her life. But she’s going to make it.

Your life is going to change utterly, but in many ways it will be so much better, and you will change too. You will face challenges that you never expected and find strength that you never knew you had. I won’t lie to you: there will be battles ahead. With an indifferent state and an uncaring bureaucracy. But you will find help, you will find support, and most of all you will find friends, old friends who stay in your life and new friends in the same situation.

Her suffering in the hospital will end, because she will be stabilised and they will find a combination of medicines to treat her. Those bitter tears you cried with despair at not knowing how to help your daughter will be replaced with smiles of joy when she smiles at you every morning. You have the internet now, and there is lots of advice and support groups that can help. But you still might try desperate treatments. You might visit healers who live on remote mountain tops, travel abroad with a hired oxygen machine for specialist help, consult every type of therapist until you can’t take any more disappointment. You look at adults with cerebral palsy and wonder which one your daughter will resemble. Do not worry, she will look like herself.

Are you even wondering what you want for her on her 21st birthday, right now when all you want is for her to live?

To be happy?
To fulfil her potential?
To be kind and affectionate?
To be patient?
To be sociable?
To enjoy life?
To live the life of a young woman and enjoy music and dancing, shopping and friends?

She is and she will.

It’s going to be different, but it’s going to be okay.

B, all grown up, premature baby, #WorldPrematurityDay

(This is a revamped old post)

 

The girl who lived

The bad news began on the way to the labour room.

“What are my chances of a live baby?” I asked.

“About 30/70”, was the reply.

The date was October 29th, 1996, and I was 26 weeks pregnant.

After the birth she was whisked away to the Neonatal Intensive Care Unit (NICU), and life with a severely premature baby began. Problems on problems, diagnoses on diagnoses, crisis after crisis. I watched other babies go home, while she was transferred to the local children’s hospital.

It seemed that few people thought we would bring this baby home: an urgent baptism was advised, and we only received a handful of cards. But bring her home we did.

As time passed her medical problems eased, but the assessment of her physical and intellectual disabilities became devastating, and there was an assumption that she’d never be able to do anything, and residential was suggested more than once.

Of course, I assumed she’d be able to do everything – with the right interventions. I assumed she would learn to walk and talk, I put her name down for the same schools as her big sister, and I still have the bittersweet letter from her sister’s secondary school offering her a place. We were all wrong. She confounded all our expectations in her own unique way.

She may not walk unaided, but she loved using a walker as a child – no suitable adult one has been found.

She may not talk using words we can distinguish, but she is very vocal and expressive and definitely makes herself understood!

She may need nappies, but she also uses the toilet and is so proud of herself when she does.

She didn’t go to mainstream school, but she went to the best special school in North Dublin (I may be a bit biased).

She is not in paid employment, but is holding her own in a mixed ability transition programme for young disabled adults – no sitting in circles with a groups of docile non-verbal adults in wheelchairs listening to someone strumming a guitar. Not my daughter.

21 successful years.

21 years of smiles, pure love, patience, calmness and joy. Living in the now, no regrets, no malice, no grudges.

The girl who lived, and still lives, and who inspires me every day.

Happy Birthday B!

Smiley, B, 21 today

—————————–

And this is how it all began in case you missed it the first time round…

Born Too Soon

It was October 1996 and my then husband and I both had great jobs, a wonderful little girl, and another baby on the way. We has just moved into a beautiful old redbrick house near the City Centre. It needed a a lot of TLC, but we were young, we had plenty of time, didn’t we? Well, we got our answer just three days later when our whole world began to change.

I was having lunch out with a friend from the office when I began to feel that something was not quite right. Very quickly I was bundled into a taxi and packed off to the Maternity Hospital, briefcase in hand. There I was marched past the snaking lines of bottom-shuffling women, who I don’t think were too impressed, and straight in to see the doctor. After a couple of tests, I was told that I was losing my waters and was likely to go into labour within 24 hours. I was 24 weeks pregnant.

I remember crying and friends visiting and then….nothing. I did not go into labour and it was like the hospital did not know what to do with me. I was parked in the prenatal ward and left to wait. I watched other women come and go. For some everything went well and their babies were delivered safely. Other times I saw weeping families and did not dare ask why. Some women who were there when I arrived were still there when I left: some spent most of their pregnancy walking the hospital corridors. I made one very good friend who arrived on the ward during my second week there and we are still in touch today.

Meantime my hormones were in overdrive and I did weird things. For some strange reason the hospital catering staff only served tea, but there were two coffee machines. One dark morning, both were not working, and I went back to bed, pulled the curtains and refused to come out, until someone got me a mug of coffee. I missed my other daughter horribly, and very quickly decided that one hour a day visiting was not enough – so I negotiated day release! I only lived a 5 minute drive from the hospital so they agreed that I could go home in the afternoons once the baby seemed to be okay. Just in case you were wondering: I was a public patient and all the care up until I went into labour was fine: I was regularly checked, I was given the most disgusting injections ever to mature the baby’s lungs, and the staff were supportive and helpful.

On the second Friday there were signs that things were starting to happen and an infection was mentioned. For whatever reason, I don’t remember being given any medication for this. Soon after I started to feel mild pains – and so did my friend – and she kept my sanity intact as we struggled through the weekend together. On Saturday I asked to be checked again, but was told that I was not in labour, same on Sunday, same on Monday. The SHO (Senior House Officer) checked me on Monday morning and said again that nothing was happening. Pains continued and sleep became a distant memory. By Monday night I was miserably tired and almost felt abandoned when my friend was wheeled down to the labour ward by the SHO. So some pethidine was prescribed, and it made me feel a lot calmer. I just lay and listened to music with my eyes closed. Of course the staff assumed I was sleeping. But the pains continued to get stronger and about 3am I called for help. I was checked and suddenly people started running around, finally they were admitting that I was in labour.

Initially everything seemed to be going well, then things started to go wrong, you could see the worried faces, but as there is no agreement over what happened, all I can say is that the consultant was called in the middle of the night, no caesarean was performed, and the SHO apologised for what happened.

By the time my baby was born, there was a whole team of people in the room waiting to work on her. The shocking thing was the silence, there was no new born cry, my baby was just whisked away. “Is it alive?” I asked… and it seemed a long time before I got an answer.

Failure To Thrive

My baby weighed 875gms (1lb 15 ozs) and her Apgar scores were fairly good considering, but she was rushed straight to the NICU. Everyone left the delivery room. The drama was over, but I was still in shock. I went for a shower – the upside of no epidural – and then up to the ward. Seven pair of curious eyes looked at me as I walked in with no baby. I went to the bed, pulled the curtains, and prayed for sleep.

There was one person that I was very happy to see – my friend from the pre-natal ward, whose baby was also in the NICU. And so we went down together to see them. B was on an open incubator, she was so thin and tiny, not like a baby at all.  I couldn’t touch her, I couldn’t hold her, I couldn’t help her in any way. I felt sooo useless, yet I knew that I totally loved this baby with everything I had and I just willed her to live.

NICU was a confusing scary place.  very time an alarm went off I would panic, thinking that my child was in danger, while the staff were more relaxed. And I soon realised that alarms sounded almost continuously – you just had to stay calm. There was a whole new language to learn: apnoea monitors, sats (as in oxygen) monitors, electrolyte levels, feeding tubes. There were procedures to get used to, visiting times and the *joys* of the milk expressing room.  One thing did stand out. On the label with all her details was the phrase ‘premature footling breech birth’. I’d never heard of this before, and it was only later that I discovered the significance.

I went home after a short sleep, and fell into a new routine of home and hospital – work long forgotten.The days passed in a blur. There was an early morning phone call when things went wrong, she had a bleed, but there was no noticeable change in her. I cried, but none of it made any real sense, even after reading all the leaflets we were given. Had I done something that could have caused this? At 3 months pregnant I’d accidentally drank some day old milk in my coffee. Could that have affected her development? Or what about the sprained ankle a month later?

My eldest daughter was in shock as well but seemed to adjust faster than her parents. She was given a colouring book for siblings of premature babies, and from the very start she made a big fuss of her little sister. In those days siblings were allowed into NICU and she would sing and talk to B – she even asked for an incubator for her dolls for Christmas. Santa did not manage to find one, but he did get her a doll-sized set of syringes and feeding tubes.

Days turned into weeks, and I watched the other babies pass out my daughter: they were promoted to a lower dependency room and my friend’s baby went home. We weren’t really told why B was still in NICU, just that she wasn’t thriving. There was only one thing obviously wrong: her right hand was twisted, but we could live with a damaged hand. We were just so glad that she was alive.

Around this time, we were called to a meeting with a neurologist. Most of what she said went straight over my head. I was just so tired and scared for my little baby. The neurologist mentioned cerebral palsy, in a very casual way as I recall. She just dropped it into the conversation. Again it made no sense. All I knew about cerebral palsy was the film My Left Foot, and surely B wasn’t like that.

In the meantime I had to plan for Christmas. It needed to be special for both of my children. Santa even found his way to B’s incubator and left a little teddy for her. I bought the smallest Christmas dress in the whole of Dublin –  it was for a 5lb baby and reached nearly to her ankles. We all visited, and took turns in holding her carefully, to avoid dislodging all the tubes and pipes: she was still so small and fragile.

Foolishly I made a pact with, well whoever is listening up there, that if B reached 3lbs by Christmas Day, then everything would be okay.  Sadly, she didn’t….

Living in the Hospital

After Christmas, everything began to look more hopeful. B was promoted from intensive care to high dependency, and began to feed and take bottles – my milk dried up after 6 weeks so breast-feeding was not an option. She still had breathing problems, heart irregularities, possible sight problems, and electrolyte imbalances, but apart from that, all seemed to be going well. Three weeks later she was moved to the Paediatric Unit, usually the last stop before home, where babies get used to a routine of sleeping and feeding. But not my daughter. New problems emerged. Spiky temperatures that did not respond to antibiotics. Wet nappies but mild dehydration. She was so small and placid that I missed these signs, I was not aware that anything was wrong. But I have to try not to think about how much she might have been suffering: she would have been dehydrating between feeds, how horrible is that for a tiny baby? It seems that the nursing staff were baffled too. It took a weekend locum to spot the symptoms of a rare and dangerous condition – diabetes insipidus – and within hours she was transferred to the local children’s hospital. I don’t know who the locum was, but she probably saved B’s life, or at least prevented her disabilities from getting worse.

And so began two years when the local children’s hospital became our second home. During that time B’s life hung in the balance many many times and we never strayed more than a 30 minute drive from the hospital. I don’t think I could say a bad word against the place. Her consultant always looked on the bright side – “just don’t let her drink too many pints of Guinness when she’s older, and she’ll be fine,” – and worked with me to bypass hospital admin: he let me type up urgent letters and faxes. He would sign and stamp them and I would get them in the post. Even now she is remembered by hospital staff and on the very rare occasion that we visited A&E in later years, someone always came down to say hello.

The ward was a narrow corridor with lots of tiny rooms, one for each child. Room for a cot, a chair, a washhand basin and little more. Utilitarian, they made me think of monk’s cells. It is the sound of the ward that I will always remember: it was never quiet. Even when the babies stopped crying, there would always be the beep beep beep of the equipment, the urgent alarms on the sats monitors*, the whoooosh of feeding and suction machines, and the low murmur of nurses’ voices.

The saddest part was that some of the babies had no visitors. Perhaps their parents found the problems facing them were too overwhelming. I never knew:  it was not spoken about.

But even with all the fear and worry, for me it was a place of hope. A place of transition. Another step on the long road home.

For two months the wonderful doctors and nurses battled to stabilise our tiny baby. Bloods were taken almost every day, until she looked like a junkie and became terrified of anyone in a white coat. She enjoyed her bottles, but problems with reflux and breathing were on-going, and I still remember the day when she choked on her milk and I screamed as she turned purple in my arms. Staff came running from all directions and whisked her off to be resuscitated. I have never been so afraid in my life and my eldest daughter had to go home with her play-school teacher that day as I was in no fit state to drive.

Yet at the end of March it was decided that we could try and manage her at home. Lots of training was provided, and a huge box of equipment and medications. Everything had to be carefully recorded and monitored, including her input (everything she drank) and output (wee and sick) and I had to weigh her every day.

I was so happy to have her at home and took her out everywhere in the pram and proudly showed her off, even though she looked a little odd, with her huge head and her tiny arms and legs. She was happy too, and she showed it: a few days after she came home I was cuddling her in the rocking chair after a feed when she looked up at me, opened her eyes wide and the most glorious smile lit up her face. I burst into tears. I had not known if she would ever smile, so it was just amazing. Once I stopped crying I picked up the phone and rang my Mum. Then I cried again!  In that moment I really believed that everything was going to to be fine….

And, of course, it was.

 

The meaning of minutes

I’m sure I read somewhere that the most powerful person at a meeting is the one who writes the minutes. Especially if the minutes are the only record of what was said and agreed.

That theory crossed my mind this week when I received a set of bland minutes from a meeting I attended on Monday night. They cover the facts given and the actions proposed, but say nothing about the words that were spoken. Are all minutes like this? It’s sad really, because the passion and inspiration from many of the speakers is completely absent: the minutes do not tell the full story.

I’m sure you won’t be surprised when I tell you that it was a disability rights meeting. Maybe a little surprised it involved an evening trip across the River Liffey. And perhaps amazed that instead of trying to find a sitter, I brought my two younger children with me. Including my disabled daughter B, even though I guessed that some might consider her vocal contributions disruptive. She should be heard and she should be seen, and I won’t let anything get in the way of reminding people that her needs are important too. Even when those needs may be a little different to those of the general disability population.

It was a small meeting: despite all the publicity, only about 30 people were present – out of the 300,000 or so who are affected by disability in Ireland. It just shows how tired and unsupported most disabled people and their carers feel.

But I really enjoyed it, because there was lots to inspire and digest:

A factual mini presentation about disability housing issues from David Girvan, and an impassioned plea for real change from Aisling McNiffe were among the parent and activist contributions that were preceded by some powerful words from the main speakers of the evening.

First up was Dr Tom Clonan, author, security analyst and busy advocate for his disabled son Eoghan. Here is just some of what he said:

The number of organisations agencies etc is mind numbing and little or no accountability. The situation is getting worse and worse. Disabled people becoming homeless is a policy. Levels of suffering completely unnecessary.

Meanwhile the Government has 44 media advisors. Choosing to ignore us. Because they can.

We need to make this a general election issue, and reach out to the able community.

We can make change against resistance: I know how to fight, and I will spend the next 25 years fighting.

👏👏👏👏

Graham Merrigan is a wheelchair user who lives an independent life and described his issues as mostly in relation to infrastructure, taxis, misuse of parking bays etc.

Local PBP Councillor Annette Mooney raised the issue of the still unratified UN Convention on the Rights of People with Disabilities (UNCRPD), and told the meeting her belief as to why it has not happened here, when almost every other country in the world has ratified:

They won’t ratify it because you’d be entitled to things. The main reason for not ratifying is money.

Why am I not surprised by this opinion?

Finally the gathering heard from Senator John Dolan, who is also CEO of the Disability Federation of Ireland.

On the Budget and ratification of the UNCRPD:

State signs the international treaty, and it’s like getting engaged. Ratification is the day of getting married. Ratifying means your starting a progress of implementation. It doesn’t have to be right straight away.

On community living for disabled people:

Some HSE staff are getting people out of institutions , others are putting them back in. You can protect an institution, it can be seen, while cutting a home help is unseen. We’re fighting to get people living in the community but as it stands the community is a very vulnerable place to be.

👏👏👏👏

If you only read the minutes, you’d think that attending this meeting was just a boring duty. It wasn’t. It was a pleasure and it was worth it, and I came away feeling less alone, and more understood. The minutes had no meaning for me. The quotes I’ve shared here give just a taste of what the meeting was really all about.

Note: I typed copious notes throughout the meeting and I hope I have reflected its spirit here. I should also mention that People Before Profit TD Richard Boyd Barrett was the MC for the evening.

 

The new crime of infantilisation

It’s 3am. Your daughter is kicking her legs and giggling. You drag your weary ass out of bed and try to work out what she wants as she can’t explain – so you change her nappy, you offer a drink and adjust the bedding.

But your daughter is not 6 months old. She’s 20. And that’s years, not months.

So perhaps her mum can be forgiven for not always treating her like other adults.

Because I am her mum, and I do get it wrong sometimes.

“You talk to her like she’s a baby!” said my son to me a few years ago. And I realised he was right. I certainly didn’t talk to my disabled daughter B as though she were a typical teenager. But in my defence, she wasn’t, and while I’ve tried to change in deference to her age, it made me a bit sad to stop doing something she seemed to enjoy. I was reminded of that conversation again last year when I saw a tweet accusing parents of infantilising their adult disabled children, because they were opposing the closure of the campus-based homes where the adults currently live and moving them into small houses in local towns. This is Government policy in Ireland.

On further investigation I soon discovered that infantilisation is a big issue in the disability community.

Key complaints include using baby talk, over explaining concepts, talking to a carer instead of the disabled person, not listening to their opinions and over protecting them.

This kind of behaviour must be very upsetting for those with physical and sensory disabilities, and mild to moderate intellectual disabilities. And I regularly read articles by well known journalists that annoy me with the way they portray disabled people. But are all these concerns relevant for those with severe to profound disabilities?

What I’m seeing is that there is a tendency to pretend that my daughter has more abilities than (I wish) she has, and that might lead to her needs not being met, facilities not being provided, and a nod of the head being taken as agreement, when its just her weak neck muscles.

And most bittersweet of all is that although my 20 year old daughter has matured in some ways, she retains several traits and reflexes that are normally only seen in infants and young children. I was going to list them here, but perhaps that would count as infantilisation too?

I find it hard to accept that my daughter is exactly the same as all the intelligent articulate disabled people who may claim to represent her in the media, in policy making, at meetings and protests. I listen to all the policies being put in place for disabled people, and all the rights being asked for, but they don’t seem very relevant to her needs.

Disabled people do not want to be defined by their disabilities, but rather by their abilities, and that is fine by me. They don’t want to be described as vulnerable, and that is fine by me. They point out that all humans have the same needs for food, shelter and love, and that is fine by me too, but my daughter requires so much more help than they do to get her needs met.

Disability is now the preferred term for everyone who has additional needs, but the general public seem to assume that it means that someone can lead a normal life once they have a suitable wheelchair, home, personal assistant, equipment and accessible places to go.

Ratification of the UN Convention on the rights of people with disabilities should help with all those things, but not rights to a day service, respite, life time planning or transition to independent living, and no-one has told me how my daughter’s life will improve. Yet I’d love to know!

Take independent living. It’s being suggested that disabled people who live with their parents should be counted in the homeless statistics, because as adults, they should be living in their own home. I get that, but looking at all the options and the current policy of placing disabled people in little houses in the community, I would not be able to sleep at night. I’d rather continue sleeping in the alcove in the kitchen just yards from my daughter, so I’m there when she needs me at 3am. Or if there was ever an emergency, I can get her out quickly. I will do that for her. Would anyone else?

My daughter is also being gently eased out of the day programme she loves into ‘the community’, under another policy of the Irish State. Go to any shopping centre during a weekday and it is full of disabled people ‘in the community’. I am going to try and make it work for her, but I fear her enjoyment of life will be reduced and the improvements I’ve seen in her social skills will be lost if she ends up spending time away from her friends and familiar surroundings.

Yes trying new things is important, and both I and others in her life ensure  it happens all the time. But it has to be at a pace she is comfortable with, not one ordered by the State and its stupid one size fits all policies.

If you can read this this and object, you are very lucky. My daughter cannot read nor would she understand its complexity. Previously I would have explained that by giving you her mental age, but apparently that is no longer acceptable either! Yes she is an adult, yes she has years of experience, and a scatter of different abilities, but she also has many of the needs of a very young child, and someone has to ensure those needs are met. I’m afraid that only a mother would be willing to do all that needs to be done.

If all this adds up to infantilisation of my daughter, I make no apology. But I hope for forgiveness and understanding. All I’m doing is trying to ensure that my daughter has the best life possible.

 

 

Everyone’s disabled now, and that’s a problem

During the 20 years since B was born, she has gone from being mentally handicapped, to having special needs, to being severely disabled, to having high support needs, but now apparently she is merely ‘disabled’.

And I’m not comfortable with that.

It’s hard to discuss because it makes people very angry, as I found out this week on twitter.

Language has become an emotive issue on social media, with many people (like me) wary of some topics because we don’t know the current terms in use and the backlash can be ferocious if you get it wrong.

Some believe that changing language can change attitudes, and I agree: but the meaning of the favoured new words has to be crystal clear, especially in this area, where words affect attitudes, policies and the lives of real people.

Disabled is now the preferred term, yet someone walking with a limp can call themselves disabled, as one mother pointed out in a radio interview this week.

If that’s how the public and policy makers think of disability, then they will never consider children and adults like my daughter in their plans.

Families like mine feel betrayed, ignored and abandoned, by the state, the media, and even sometimes the disability community itself. The current public discourse simply denies the existence of severe and profound disabilities.

Worse, I’ve noticed a trend for the term ‘severe disabilities’ to be flung around like confetti at a wedding, especially for inspirational stories like the ‘severely disabled’ man who has a brownie bakery in the US. Great for him, but he bears no resemblance to my daughter. And a journalist I respect asked on twitter to speak to a severely disabled person yesterday. I’d love to see her try to get a usable answer from my non verbal daughter. The only time that severe disabilities seem to be used correctly is in the reporting of medical negligence cases.

The denial seeps through every level of state and society: Through policy, language, and by ignoring any attempt to discuss the issues.

My eyes were opened in 2001 when I was searching for a school for my daughter and all I was offered was a so-called Day Development Centre (DDC) where she would get great care, but no access to teachers. When I challenged this, the existence of DDCs was denied by the State. So we took a case to court, and it was settled in my daughter’s favour. Because children in Ireland have a constitutional right to an education, and that means access to a teacher. However that’s the only right that has helped my daughter. As an adult, she has no rights, especially as Ireland has still not ratified the UN Convention on the Rights of People with Disabilities.

So clarity is needed, rights are needed, and so is understanding and inclusivity.

This article has been doing the rounds, and is an explanation of why we should all use the term ‘disabled’, and I like most of it, apart from the last paragraph:

“We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most.” 

Because, you see, my daughter and many others like her, cannot do all those things.

Once again, her existence is being denied by being called ‘disabled’.

Personally I liked the term ‘special needs’ because it sounds positive, whereas disabled sounds negative to me, but I’m happy to describe my daughter as ‘disabled’, as long as her needs and disabilities are also included in its meaning.

I also do not believe that our lives are tragic or that my daughter suffers as this article seems to suggest, even if others feel that way. Nor would I describe my 20 year old as a ‘baby’ despite her functioning level (and that’s a post for another day).

I think if more support, more positive coverage, real rights and real help was provided to the disability community and their carers, then many of these issues would go away. For now the State is happy to sit back, do little, spend less, and watch us all fight each other.

There’s a long way to go. Only yesterday a well dressed tourist whispered “God Rest Her”, as he watched B in the street. “She’s not f*ckin’ dead yet!” was the reply I wanted to give. Instead I smiled, because I’m sure he meant well, and he’d probably never seen or read about anyone like my disabled daughter before…

 

Happiness is… being able to use a toilet when you need one

It was just a little accident.

Not the nicest way for my disabled daughter B to wake, but it was soon cleaned up, and she was full of smiles once again.

B, happy, 2017, Smiley, B

Until she wasn’t.

She began sticking her tongue out at me, it’s one of the ways she communicates her needs. But it can mean several different things. So I offered a drink first. But that wasn’t what she wanted.

She still needed to go. So I organised another trip into the toilet, with the help of her hoist.

If you’ve been reading about my daughter for a while, you’ll know that I’ve been toilet training her for nearly 17 years. Surely a world record?

But it’s not always easy. She’s non verbal so it can be hard to know when she needs to go. A regular toileting schedule helps, but enabling her to get to the toilet when she needs to requires a lot of things to go absolutely right. She has very weak muscles, so anything can upset her digestive system, from less exercise, to different food, to antibiotics or other medicines.

So she does have accidents, and they upset her, they’re bad for her skin, embarrassing, unpleasant and undignified to clean up.

And that’s at home. Things are ten times worse when we’re out and about. Because even if I thought it was okay, I cannot put my daughter on a dirty toilet floor to change her nappy: I wouldn’t be able to safely lift her back up again as my back is destroyed and she is an adult weight.

There is a solution: Changing Places Toilets. I’ve mentioned them before, with good reason, because they would improve the lives of children and adults with severe disabilities in so many ways – and the backs of their carers.

All our trips out, bar one, are cut short due to lack of these toilets, we can’t go far from home, and we can’t stay out for more than about 4 hours. Every trip has to be planned carefully so she gets to use the toilet just before we leave, and again as soon as we return. It’s very restrictive.

Smiley, disabled toilet, changing place
The only changing place we use – it’s in the school where the Rainbow Junior Arch Club is held

It could be why some people who have been involved in her life don’t see the point of toilet training her at all.

Some people seem to think it’s easier to let her soil herself and change her when they can: I’m pretty sure it happened in respite and may have been why she stopped enjoying it.

Did I actually make her future life worse by toilet training her?

People mean well, but if and when she lives apart from me – whether in residential or the community – I’m afraid the succession of minimum wage care workers are likely to do the easy thing, the thing they know how to do, the thing they do for others like her. They will change her at regular intervals, and after a while she will surely get used to it, as people get used to most things.

But it makes me so sad for her that it will probably be this way once I’m gone.

Unless there are some fundamental changes made to the lives of people with severe and profound intellectual and physical disabilities.

And that can begin with providing Changing Places Toilets as a standard in every new development.

They have the potential to change lives, change attitudes, it will give those people who need them the chance to take part in their local communities, to travel further afield without always worrying about the next toilet stop. It will make severely disabled people more visible, improve acceptance, reduce fear of the unknown.

And it just might give my daughter and others like her the dignity of being able to use a toilet, instead of being left to go in a nappy.

________________________________

Today is Changing Places Awareness Day: it raises awareness of the need for special disabled toilets that also include hoists and changing benches – the only kind that my daughter can easily use. They are not especially big or complicated – but they can make a very big difference to the lives of those with severe physical disabilities.

How you can support this campaign:

This link explains more about Changing Places Awareness Day:

http://changing-places.org/news/changing_places_awareness_day_2017!_.aspx

If you have a disability or care for someone who cannot complete this themselves, please would you do this survey and explain the importance of changing places.

https://docs.google.com/forms/d/e/1FAIpQLSeavpUMDHbsS6woZmYn-HQTunczLLGytVD6MJ-Xaj1GkWnqoQ/viewform

Finally I’ve written before about a friend’s campaign to get a changing place installed in a new major cinema development. You can support her petition here:

https://www.change.org/p/tim-richards-vuemail-com-access-to-a-fully-accessible-toilet-in-vue-cinema?recruiter=10336651&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=mob-xs-no_src-no_msg

More about Changing Places in Ireland can be found here:

http://www.inclusionireland.ie/content/page/changing-places-locations-ireland

There are also a Facebook page and group:

https://www.facebook.com/ChangingPlacesIreland/?fref=ts

https://www.facebook.com/groups/ChangingPlacesIreland/

 

Kildare Maze with a wheelchair or buggy #NotAnAd

Disclosure: this is NOT an ad, NOT a paid review etc etc

I got a bit over excited about escaping to the countryside this week, and indulged in some competitive cartwheeling and beam walking in the children’s playground at Kildare Maze. But luckily there seems to be no photographic evidence of that.

Kildare Maze, wheelchair, buggyIt was the first day of the summer programme for disabled children organised by the Rainbow Junior Arch Club: and while my daughter is now a young adult, she still enjoys many of the activities at the Club and the comfortable familiarity of the weekly routine and seeing children and adults she’s known for years.

But this was an adventure, especially as I hadn’t done any research in advance. That meant bringing everything that might be needed, from fresh clothes to nappies to several flasks of water, to a hot lunch and a soft dessert. Also lots of music CDs so she could rock all the way to Prosperous (and if you’re outside Ireland, yes that is the name of the little town closest to the maze).

Being Ireland, the first drops of rain began to fall as we pulled into one of generous disabled parking bays right outside the main reception. So they got that bit right. The disabled toilets? Not so much. There was one by the entrance and it was locked. Just why? It’s not likely to be overrun by passing tourists or vandals, so why discriminate against disabled people in this way? There was a lovely new toilet block within the complex with no disabled toilet and clearly no changing space, which would’ve enabled myself and my disabled daughter to stay longer.

There’s a roomy shelter in the grounds where we ate our lunch until the sun came out again and then we set out to explore.

There are two mazes, both with a purpose that encourages little explorers to linger – unless they suffer from claustrophobia like me. Both are large, and high sided, so you really can’t see where you are, and I was very grateful for my good sense of direction.

We began at the wooden maze, not picturesque, but the wide level paths made it easy to get around with B’s adult buggy and we enjoyed the activity too.

Wooden Maze, Kildare Maze,

After another social break, we tackled the green maze. With narrow paths smothered in hedge roots, this was not so easy to get around, and I worried about causing a jam if we met another buggy. The aim was to get to the watchtower: this is as close as we managed.

Watchtower, Kildare Maze,

And sadly, I don’t think there was any way of getting B to the top even if we had persisted until we found it.

Next on the itinerary was the crazy golf. Too crazy for me, I’m afraid, and I was secretly delighted when one of the children robbed my golf club. It was also a bit dull for B and pushing her round the course was not easy either.

pushing B , crazy golf, Kildare Maze

The last stop was the playground where B was happy watching the antics of all the children (and a couple of the adults too…).

Kildare Maze is just 45 minutes from Dublin City Centre via Google Maps, which took us down some scenic side roads where I briefly stopped to photograph this amazing sight, identifed by Facebook friends as Taghadoe, the site of an ancient monastic settlement and Round Tower, adjacent to a graveyard and the ruins of a 19th-century church.

Taghadoe,

Our verdict? A pleasant excision for a few hours, but definitely better for mobile children, including children with special needs. For us the best aspects were getting out of the city and spending time with friends in a beautiful area.

Countryside, Kildare Maze, Co. Kildare,

 

In the real world, disabled children and their carers are at breaking point

Reprinted with permission from one of my friends over on the Spectrum Facebook page.

Just off phone to twins’ social worker.

I’ve told her if more help does not come I’m going public with our story.

I  also said if they refuse more help I want an actual sit down with all involved including government ministers and hse bodies with my children’s services and professionals and if its refused I will go through the media to request that sit down again and I will be like a pit bull until I get it.

I’m done being nice and I’m done being pushed around. 

We are so severely sleep deprived we can’t even be parents to our children any more, we are like auto pilot robots who are starting to malfunction and no child deserves that.

Spectrum

In a house of 5 children, 4 children with needs, 2 do not sleep, 2 are on serious meds, 3 are in nappies, 3 have no independent skills, 3 are non verbal, 2 have pica, one is hypoglycemic, one has severe social anxiety, 2 are aggressive, 2 smear shit, 2 self harm, 4 suffer meltdowns, 3 have no stranger danger and no awareness of any danger around them, 3 can’t dress them selves, 3 are extremely noise sensitive, 3 can not be in each others company for safety reasons, 3 need one to one supervision at all times.

I could go on but I’m depressing myself.

Another family that needs help urgently, but is being ignored. Right now it seems the only way to get help is to bare your circumstances in public and beg for help, and no-one likes doing that. You lose your privacy, you leave yourself and your family open to judgement, and sometimes your children still don’t get what they need.

So please can I ask again that disabled people, carers, siblings, friends and the organisations that represent us, work together to help families like this one, and all the other people I know who need help now.