The battle to stay in balance

The battle to stay in balance

TRIGGER WARNING: discusses child death It’s a fact of life that every one of us will at one point in time cease to be as a living, breathing person. Its inevitable. And while not the most comfortable of topics to discuss, it is important to do so. Both J and I are clear on what we want to happen after our own deaths. And as parents of a medically complex, life-limited child there are certain realities that we need to address. We will almost certainly have to bury our child, and while that is a devastating thought to live with it also means that we have a chance to prepare. I don’t mean prepare ourselves per se, as someone we know once said knowing that something is going to hurt doesn’t stop it doing so when it happens. What I mean is that we can decide what we want to happen, where we want our boy to receive end of life care and what that care might look like, and what interventions we do and/or do not want him to have. This comes in the form of an Advanced Care Plan; it’s something I have feared and run away from even thinking about for years. After all, my son isn’t actually dying is he?! He’s currently well, happy and enjoying his life. And as long as that is the case I can exist in my lovely, happy bubble and stay, well, sane. We are very fortunately to be supported by an amazing palliative care team; the Dude’s consultant explained an ACP is just like a Will, it is in fact called a ‘living will’ by some. It doesn’t mean we’re writing him off, but it does mean that our wishes are recorded so that if/when its needed we can focus on just being with him. I’ll admit that has helped me put things into a better perspective.  As a society we’re getting better at talking abut mental health, but we still baulk at talking about death; too many people don’t have a Will in place, don’t talk about organ donation, or whether they want to be buried/cremated/have a natural burial. If by talking about it in a positive way and putting things into place we can ensure that our son’s eventual passing is as peaceful and the best death possible, then surely that’s something we should welcome the opportunity to do? The post The battle to stay in balance appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-battle-to-stay-in-balance/
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Latest Podcast: Hiring Help

Latest Podcast: Hiring Help

How to hire the aides and caregivers to support our children's complex daily needs? In this episode we discuss how to find the right people to join your family on this journey, and all the secrets to making this relationship so much more than just a part time job! Hiring help - YouTube The post Latest Podcast: Hiring Help appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-podcast-hiring-help/
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Latest Podcast: Finding Services

Latest Podcast: Finding Services

Do you feel overwhelmed and worried that you are missing out on valuable services for your child? In this episode, we will give you a map and a compass to help you navigate this rough terrain. Spoiler alert: You may find them in the most unlikely of places! Finding services - YouTube The post Latest Podcast: Finding Services appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-podcast-finding-services/
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Bad Language

Bad Language

I recently asked a whole bunch of parents of disabled children, and disabled people themselves, what they think of as some of the most inappropriate or downright offensive language that they have heard or experienced as a result of their own or their child’s disability. The result was a huge discussion that produced a massive list of words and phrases, far more than there is space for in this blog post, although I’ve included a list of some of the most quoted ones below… What also emerged is that there isn’t universal agreement on some of this; some words, labels and descriptions are owned by some people and anathema to others. What is clear, however, is that first and foremost, disabled people (of any age) have the right to use whatever words, labels, descriptions etc. that they feel are applicable for them, and nobody has the right to tell them that they are wrong. So, caveats all in place, here’s just some of the words that people mentioned, starting with the ones used to belittle, diminish, put down, be nasty to, or otherwise insult disabled children (and indeed adults too). I’ve sorted them alphabetically, and even just doing that I was deeply troubled by this list… Antisocial Bad (as in ‘bad behaviour’) Behind Cold Crazy Cruel Cursed Dangerous Defective Disruptive Doesn’t care (also, ‘lacks empathy’) Dumb Freak Has ‘issues’ Idiot Lame (as in dull, uninspiring; see other use below) Naughty Not normal Pitiful Rude Slow Strange Stupid Ugly Waste of space Wrong (as in ‘something is wrong with them’) (There were many more words than this sent to me, I’ve only included a selection here) A few other words came up that have historical use, and which should be consigned to history, but it seems are still in use by some people today, including professionals who should know better… Handicapped Retarded Spastic A few people picked up on words that are used in literature, even in fairly modern versions of the Bible for example, such as… Cripple Lame (as in walks with difficulty, see other use above) Other words or phrases that deserve their own category include these… A bit special… (as in ‘they’re a bit special’, or ‘a bit Autistic’ or ‘a bit OCD’, for example) Doesn’t look… (as in, ‘he doesn’t look Autistic to me’, usually by someone with no relevant experience) Fits (rather than the more encompassing ‘seizures’ that reflects the wide range of seizure activity) Has e.g. Autism (rather than ‘is Autistic’. It’s not possible to ‘have Autism’ any more than it is possible to ‘have gay’ or ‘have female’) High/Low Functioning etc. especially related to Autism (generally falling out of use, often unhelpful) Mum/Dad (when being referred to by professionals) Non-verbal (rather than ‘limited functional verbal language’ which recognises that some sounds are still communication) Service user/Client (when being referred to by professionals) Severe (when in reference to e.g. Autism, ADHD, or other neurodivergences) Suffers/Sufferer (as in, ‘she suffers from Cerebral Palsy’) Wheelchair ‘bound’ (rather that ‘uses a wheelchair’) There is also a wide debate as to what the most appropriate phrase to use is out of… Special Needs vs Additional (Learning/Support) Needs vs Disability/Disabled ‘Disability’ is a term defined in law (paraphrasing the Equality Act 2010 ) as a physical or mental impairment. The effect on normal day to day activities is substantial and long term. A child or adult who is disabled, whether this is a physical, mental, or other disability, experiences a substantial loss or limitation of the opportunity to participate in everyday life and do normal day to day activities on an equal level to that of their peers due to barriers resulting from their disability (or societal barriers due to lack of adequate accessibility). The terms ‘Special Needs’ or ‘Additional Needs’ (‘Additional Learning Needs’ in Wales, ‘Additional Support Needs’ in Scotland) are less clearly defined, and although ‘Additional Needs’ is generally in wider use now, ‘Special Educational Needs’ or SEN (sometimes ‘SEND’ adding Disability on the end) is in common use when referring to school age children. What was generally agreed on is that terms such as ‘differently abled’ shouldn’t be used. Almost finally, a helpful website was suggested that adds some further thoughts to this conversation:  https://www.languagecreatesreality.com/ And finally, just a reminder that some of the above is open to debate, discussion and polite disagreement. As I mentioned at the beginning, it is up to disabled children and adults themselves to decide what terms to use (or not use) regarding themselves, and however passionate we might be about stopping or promoting the use of certain words and phrases, we should all respect the rights of each individual to use what they feel is right for them. As for me, I’ll let my last words on this not actually be mine but T.S. Eliot’s, “For last year's words belong to last year's language. And next year's words await another voice.” The post Bad Language appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/bad-language/
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Dear Carer, Dear Friend

Dear Carer, Dear Friend

They told me I qualified for help from social care.  ‘Respite’, they called it.  They put some money in an account for me, and told me to find ‘staff’. I didn’t want staff.  I didn’t want strangers in my home.  I wanted to fix my child, but no one was helping me with that.  I was lost, I was desperate. You came into our house, and into our lives that day, and you’ve never left. You didn’t notice when the house was a mess.  You didn’t care when I was still in pyjamas.  You talked and you listened, you watched and you learned.  You took instructions sometimes before they even left my mouth.  You absorbed like a sponge.  Nothing is weird or unusual to you, you don’t flinch when dinner lands on your lap, toys are thrown at you, and your hair is pulled out.  When he’s at his worst you still seem to find his best.  You are so patient and gentle yet so firm and focussed.  You are calm, organised, and proactive; everything I want to be. You bring experience but also open-mindedness.  You take direction but also direct me. You ask about ME.  You care and you listen. You make me tea and you make me sit down and drink it.  You are sensitive and sympathetic but not patronising or judgemental. We have good days and we have bad days.  We learn together.  We reflect on days gone by and feel collectively proud of what’s been accomplished.  You have seen me at my worst, and at my slightly-better-than-worst. You bring out my best.  You show me it’s ok to be me, and reassure me I am doing an ok job.  Over time you’ve shared your own stories, and over time we have become friends.  You’ve confided in me, you’ve celebrated and cried with me.  I’ve watched your career and your home life change and evolve.  When life has been cruel and you’ve been at your lowest, you somehow find strength in him and it diverts your pain. When he’s been through lows and times of real difficulty, you’ve pulled us all together.  I’ve been a shattered mess and you’ve been the tower of strength.  I have watched you enjoy him and in doing so I have remembered how to enjoy him too.  You’ve made him so funny! He tells me the jokes he has learned and repeats the naughty words and silly actions.  You’ve got your own private jokes and phrases and he loves that you have secrets. You’ve been brave! When I was so scared to leave the house, you showed me resilience.  You didn’t falter at the looks and glares, you didn’t fret over the possible obstacles.  Your primary aim has always been to give him every ounce of what he wants and what he needs, with a brilliant ‘screw-the-rest-of-the-world’ attitude.  You’ve taught me how to grow a thicker skin. They said, don’t employ friends.  They said, you’re their manager, not their mate.  They told me to give clear instructions and maintain boundaries. Draw up contracts.  I still forget you’re here to be paid; you make me feel you’re here out of choice and not for an income.  Your name is hollered on repeat when you’re due to arrive, and he watches and waits with excitement.  The house feels lonely when you leave and you often leave late because you’re so engrossed in each other. You’ve been his therapist, his taxi, his teacher, and his advocate.  And you’ve been his best friend. My child is a better person for knowing you.  The post Dear Carer, Dear Friend appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/dear-carer-dear-friend/
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Are things changing for the better/and at the correct rate?

Are things changing for the better/and at the correct rate?

One of my favourite lyrics is “I’m holding onto a fairytale. We’re moving forward but we’re not there yet.” Change is inevitable. Attitudes change. Stigmas get challenged. There are days where I am grateful to be living in the age that we are in. Though things can be far from ideal, and there is always a long way to go, things in many ways are getting better. I am grateful for the continued increase in changing places facilities for example. More of these being available shows an acknowledgement and agreement that people with disabilities do indeed deserve the same toileting privileges as everyone else and to be able to stay out for longer. I am grateful to the many businesses now incorporating PODD/PECs symbols into their menus and other paperwork so that those who communicate non verbally still have a voice. I am grateful to the few parks out there that make sure there is something for everyone of every ability to enjoy. I am mindful that only decades ago, a child with a lesser disability than Amy’s, would be encouraged to be raised in a home for deaf people (or in some other way institutionalized). I won’t go into it any deeper so as not to spiral into an existential crisis, but least to say progress has been made. The treatment of disabled people historically has been nothing short of atrocious. Still today I am aware of things happening that should not. It honestly terrifies me and keeps me up at night. I am ever grateful to everyone out there who has campaigned for change. Campaigned for rights. They shouldn’t have to, but I am glad that they did. It is so easy to ostracize and make vulnerable any type of minority but I feel that generally more and more, maybe in the advent of social media and awareness being raised… that more people are being given a platform to make change. In spite of all of this gratitude, it still pains me that prejudices do and always will exist. Families like ours live under constant threat of vital services being removed, funding being revoked, changes to benefits and so on. We already live day to day with medical uncertainties of the person we care for. We make constant almost daily decisions that can be potentially life changing.  I seem to oscillate at the moment from “the world is starting to understand… things are getting better” to then plummeting into a state of existentialism and fear at the state of the world. I know that it isn’t just families like ours that feel it. The pandemic and other world events have caused so many of us to think about the more severe what ifs in life. I spent a lot of the last month with heartache over the Ukraine situation. I wonder how on earth a family like ours may fare if faced with that same situation. A trip to the supermarket is enough of a well planned mission, never mind fleeing terrified from our country. I suppose it’s all about perspective. Recently we were informed that our town is finally getting some Changing Places facilities. I can’t say enough about how much this will transform our days out. However the negative side to this is that when those facilities are closed due to repair issues etc, it feels like the ground beneath me has shattered.   It’s hard when you plan a day so meticulously and account for every eventuality and then you’re faced with the dreaded out of order sign. It happened to us last week at the city hospital. I had been trying to get a urine sample from Amy for a few hours and was required to transfer her from chair to bench several times. We are a week on from that day and due to a broken hoist my back is still so tender from that day. In many ways I’d say in my 8 years of being Amy’s mum, things have changed for the better. However, the more we go out and access the community the more I am saddened that there are still so so many shops and cafes etc that we can’t go in because of the steps. I know for many buildings it may not be possible for whatever reason, but it is still so disheartening. Not having access feeds into feelings of “we don’t belong here”, “we aren’t wanted”, “we have once again not been thought about”. It’s not a nice path to go down and obviously I can be prone to being oversensitive.  I just want to live in a world where everyone has the correct treatment and opportunities. Where considerations are made to ensure something is accessible and inclusive. I don’t want to spend my life constantly wondering “will we get through that door?” “what will we do if we can’t change her there?” and so on. My other worry is also people’s attitudes. If Amy is being noisy and having sensory issues/behavioural challenges, I want for people to understand and accept. I know it isn’t ideal but at the same time i don’t want to have to be nervous of other people’s reactions. I wish more common sense to prevail. If somewhere is still "one parent only" due to the pandemic - make an exception for someone who otherwise requires two carers! This isn't asking for "special treatment", to me this is basic common sense. Let people have what they need to survive and then thrive. Ask yourself if you were in my shoes would you be able to do all of that by What do you think? Are things changing for the better or the worse?  What changes would you like to see? The post Are things changing for the better/and at the correct rate? appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/are-things-changing-for-the-better-and-at-the-correct-rate/
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Latest Podcast: Communication

Latest Podcast: Communication

Good communication is vital for every relationship. In this episode, we discuss how to overcome communication barriers with our  private circles as well as the general public. For people living the disability life as well as allies to the disability community, this episode is for you. Communication - YouTube The post Latest Podcast: Communication appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-podcast-communication/
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