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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Care needs of a toddler but the body of a man

Care needs of a toddler but the body of a man

Few people talk about disability in teenagers. The parenting books don’t tell you how to cope with a non verbal high needs child who is taller and stronger than you are. How do I keep him, and others, safe as his physical capacity grows but his understanding doesn’t? What will happen to him when schooling ends? How do I care for him for the rest of my life? These are just some of the questions I find spinning in my mind as I lie in bed at night trying to sleep. He’s only 13 yet the damage he can do in a meltdown is so much more than when he was a child, the places I can take him too get smaller by the day and the products he requires to meet his needs get ever more expensive. Yet the expectations of society are now greater than ever. Gone are the looks of sympathy or compassion and in their place increasing judgment and condemnation.  “Haven’t you got him to stop doing that by now?”  “He’s far too old to be doing that.”  “Surely he should be using the gents toilets at his age?”  Then you have the added needs of puberty. Hair washing is traumatic for everyone so just the thought of shaving him terrifies me. Consent becomes a huge issue too. If he doesn’t consent to taking vital medication or a bathroom visit or washing does he have to right to really say no if he can’t understand the implications? But how do you make someone who is taller and stronger than you do anything they don’t want to? Gone are the days of physically lifting him from the middle of the road when he chose to just sit down or bribing him with ‘first and then.’ Do I allow a beard and moustache to grow even though he lacks the ability to keep them neat and clean? Then you have by far the biggest issue ever: what about the future? For children like my son with the most complex needs who have always attended specialist schools there isn’t really much option for adult years. College or university aren't suitable and it becomes all about moving to adult social care where the person is looked after by carers either in the community or in day care. It’s simply about entertaining him then getting him home again. It’s about cost, budgets and legal battles for power of attorney. It’s about applying for benefits in his name that he has no idea even exist. As others his age now make subject choices at school with future careers in mind my son is still happy watching Peppa Pig on YouTube. While other teenagers become increasingly independent and go places with their peers he is at home as always with no friends and no speech. The older he gets the harder it is to see the differences every day. So few talk about disability after a certain age as if by the time children finish primary school their needs disappear. It’s somehow taboo to speak about a teenager with the mind and ability of a toddler.  I will always be his mum but unfortunately I will also need to be his carer too. He is a disabled teenager who one day soon will be a disabled adult. We must never forget that disabled children grow up, at least in body if not in mind. If only more people out there were willing to talk about those disabled teenagers like mine who still have the care needs of a young toddler. Maybe then I wouldn’t feel so alone right now.  The post Care needs of a toddler but the body of a man appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/care-needs-of-a-toddler-but-the-body-of-a-man/
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When people ask about your child's condition

When people ask about your child's condition

I came across a post recently that I found really thought provoking and thought I would cast that same net and see how others feel. If someone asks you or your child about their medical condition, what do you say? My approach to this has changed a lot over time. As time passes I have learned more about people, and disabilities and connecting with others when we are “that” family. I still find that depending on my mood that day my response can vary (and at times, even surprise myself!) From conversations I have had with other families, I have found generally the question “what is your child’s disability?” comes with these sorts of replies  A - “None of your business. Why would we discuss sensitive/personal medical information with a perfect stranger?”  B - “He asked too many questions so we snapped his legs” (A sarcastic amusing reply someone once told me their husband had said to someone who was indeed asking too many questions. I laugh and cringe simultaneously) C - You reply with a brief explanation and invite questions, after all, awareness is key. D - You drastically overshare even offering an awareness leaflet causing the person to edge away slowly grimacing. E - You get immediately upset retorting “Why can’t everyone just see my child as a child and not for their disability?” (I was a little more like this at the start of the journey) I’d say I’d like to think I am an option C kinda gal but if I am being honest I am D. The leaflets I had made years ago at a time when I wasn’t ready to openly talk about Amy’s condition. I didn’t always know what to say. Now I can talk anyone’s ear off about her… not just medical things, but everything. She is my world and I am so proud to have her as my daughter.  In an ideal world, Amy would speak and be able to tell people whatever she felt appropriate. I grapple constantly with the guilt of what if she didn’t want me to tell people about her condition? Am I doing right by her? I know for every person who thinks I am approaching it the right way, there is likely someone angrily wishing I wouldn’t tell people about her.  Amy has a very cheeky personality. I feel that if she did speak she would possibly tell them all about herself (probably her love of music above anything else)... or she would maybe just ignore them completely (she sometimes has anti social days.) It's so hard to know. Once, when Amy was a baby I was enjoying a day out with her and my mum. A lady came up to me and said “Oh was it a birth trauma?”. I can’t recall what upset me more - bringing up the most traumatic days of our lives so nonchalantly, or the possibility she was calling my child “it”?  On reflection I think she had seen Amy’s NG tube and meant “it” as in the event that caused the need for the tube, not calling my child “it”. Either way, on that day, it hit me like an attack. It was tactless, upsetting, hurtful. I really wished she had either said nothing at all, or just commented on how lovely she was. Fast forward 8 years and things are much the same in many ways. Certain wordings sometimes annoy me. “What is WRONG with her”. To the person saying it it may be perfectly innocuous and innocent but something about it really gets to me. There is nothing WRONG with her. I know what they mean, but can’t they have a little more tact? This is one of many occasions I wished I wasn't too polite to say how I really felt. Instead I internalise it and dwell on it at a later date. I hate conflict. Sometimes I wonder why they need to know? Part of me thinks what morbid curiosity do they need to satisfy? People exist in many different ways. We are all different and unique in our own way. But why do we need to publicly address those uniqueness's?  But on the other hand, I would much prefer people come and talk to us and make connections like any other. Being open about a subject can break down stigma and aid tolerance, acceptance, inclusion. It reminds me of some of the times where we have been in hospital and they want to bring a group of medical students to come and ask questions about Amy. I understand and respect their need to learn, but in some ways it objectifies her like she is some sort of show and tell Q&A item. She isn't patient number 285639853 to me, she is my amazing human daughter. Of course to many she does inspire a level of medical curiosity...she has a few features that are of interest to them, I get that. Also the more we tell them the more they may focus on medicines and treatments for various muscular complaints or whatever she may have going on. Again, depending on the mood of the day I may say yes, I may say no. I will also gauge it based on Amy's mood. If she is poorly and feeling unsociable I will say no and hope that I made the right decision. One thing I find in life, and it comes up pretty much daily. You just don't know what someone is going through. When you see that family with the child in the wheelchair... they may recently have been given a devastating diagnosis and be processing some real heavy stuff. Or that same family may that day just want others to view them as any other normal family going about their life. They may not want a constant reminder that they are different in some way. Equally that same family might be really wanting to feel some kindness and acknowledgment from others to feel included and accepted. Not everyone will have the same feelings and responses and you need to always firstly take into account the feelings of the person being spoken about. Speak TO them not to who is with them. Invite them to be a part of the conversation whether they are verbal or not. We aren't a tragedy, we don't want pity, we just want to be as happy as possible and have the best lives we can, just how everybody else does. My main hope is that Amy knows that above anything else, she is a person. She does not have to be defined by her disability. There is so much more to her than that. Yes it does impact every area of her life. But it doesn’t change her as a person. She is witty, sociable, happy, chatty, excitable, sweet, clever, strong, important, valued, beautiful, and a myriad of other things.  Whatever limitations she may have she seems to take in her stride. I do see her frustration, I constantly wish things could be easier for her. But I mainly wish I could know that she knows we are doing our best and that she thinks we are doing the right things for her. I am only her parent, I am not the person living with her condition, I am not her voice but I am a strong advocate for her. I only hope that I am doing this right. The post When people ask about your child's condition appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/when-people-ask-about-your-childs-condition/
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10 Top Tips For A Successful Summer Holiday!

10 Top Tips For A Successful Summer Holiday!

Whisper it very quietly, but maybe, just maybe, it might be possible to have a holiday this year! After over two long years of restrictions, lockdowns, red-lists, cancellations and reschedules, this summer might be the one where some sense of holiday ‘normality’ returns! So, what do we need to do to prepare our additional needs children and young people for those holidays to come, whether they are overseas, UK based, or as remains the case for some of us, a staycation; here’s 10 top tips to help: Don’t leave it to the last minute – allow processing time While the attraction of late holiday deals can be tempting, leaving deciding whether to go and where to go until the last minute can make it really difficult for children and young people who need processing time to prepare for a significant change. Plan as far in advance as you can. Take a mental ‘journey’ though the holiday – list the likely issues Think about everything from the packing, the travelling, where you are going to stay and sleep, the things you are going to do on holiday, the people you might have with you and the people you might meet, the food you are going eat, everything. What are the likely issues going to be for your additional needs child or young person? List them, and then start to think about how to reduce the impact of each one. For example, if food is going to be an issue, could you contact the holiday provider and request a special menu? Or could you take some favourite food items with you? Create a ‘social story’ for the holiday A ‘social story’ is a sheet that uses photo’s, symbols and words to explain a bit about something new or complex for a child or young person with additional needs. You could create one for the holiday to outline all of the different things that your child or young person needs to know, giving them the tools to understand what the holiday will be like. You can find out more about social stories on the Reachout ASC website here: https://reachoutasc.com/resources/downloadable-resources/ Create a ‘visual timetable’ Put together a plan for each day, using symbols or photo’s to represent each aspect of that day for your child or young person. If possible, have a photo of them on some Velcro that they can move along the timetable as you go through the day. It will help them to know what is happening now, next, after, etc. There is an example of a visual timetable template on the Reachout ASC website above, called ‘Our Day At Home’. Take favourite things What favourite toys or items does your child or young person use to help them to feel safe and secure? Make sure these aren’t forgotten, but pack them in your hand baggage, you don’t want them getting lost! It may be that you could introduce a new item to take on holiday, something related to the place you are going; for example, if you are heading to Cornwall, you could get a toy seal to take with you for when you visit the Seal Sanctuary at Gweek. The toy seal could be your ‘holiday mascot’ and your child could have the job of looking after it. Having a ‘dry run’ and checking out special assistance If you are going to fly, and if the airport you are going to isn’t too far away, you could take a journey just to see it, to have a look at where everything is. Most airports have special assistance for families travelling with a child or young person with additional needs, so it would be worth exploring what can be provided. Many airlines are supportive too, but it helps to ask for assistance well in advance. Have things to do Whether you are flying, going by train, or travelling by car, there will be long periods with nothing to do. Take a pack of activities that can be brought out to fill these gaps. Depending on your child, this could be some colouring, a book to look at, some fidget toys to use, some Lego, or something on their tablet to watch or listen to, whatever helps them fill the time and not get bored. Remember snacks, drinks, medication, essential equipment… We usually remember important things like tickets, passport, money, phones etc. but make a list of what else you will need. Do you need to take medication with you? Have you got enough, or do you need to request a repeat prescription well in advance? Have you got some snacks and drinks for the journey; don’t rely on being able to stop somewhere on the way, you might be stuck in a huge traffic jam just at the time someone communicates that they are thirsty or hungry. Work with your child or young person, ask them Don’t do all of these things on your own; if possible, involve your child or young person. Seek their input, what are the things that they are worried about? What do they want to have with them to help them feel safe? What resources will help them feel in control of what’s going on? The more you talk about the holiday and work together through any fears, the more likely you are to have a successful trip. It’s back to that ‘processing time’ that I mentioned in Tip 1. And finally… it’s OK to have a staycation instead! If it all seems too daunting, too much to manage for you and your additional needs child or young person, if the complexities of trying to have a holiday somewhere else are just too great, don’t put yourselves through a nightmare, have a staycation! Some of the tips above will still work if you are staying at home but having trips out, and you can all have a wonderful time staying local and exploring what’s on offer there. And everyone gets to sleep in their own beds each night! Whatever you are hoping to do this summer, I hope these 10 tips will be a helpful reminder of some things that we can all do to make summer holidays a little less stressful and a little more fun. Have a great time! The post 10 Top Tips For A Successful Summer Holiday! appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/top-tips-on-planning-a-summer-holiday-for-children-with-additional-needs/
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