It’s holiday season! That time when we either pack up our stuff and head somewhere for a week or two, or maybe have a ‘staycation’ and relax a bit locally. Either way, a popular item in our collection of things for the holidays is our reading list; some great books that will entertain, delight, scare or surprise us!  But how about if we think about this from the point of view of parents and carers of children with additional needs. What books might we add to our summer reading list that will give us some helpful understanding or top tips that will help us with our child? Here’s some book recommendations from me that you might like to add to your summer additional needs reading list! ‘The Reason I Jump’ – Naoki Higashida – ISBN 978-1-444-77675-1 Written by an Autistic boy when aged 13, telling his story and describing the world as he experiences it. There is also an award-winning film based on the book  ‘My Diary’ – Emily Owen – ISBN 978-1-78893-166-3   A real story of childhood disability, challenge, and hope. Covering issues of self-image, self-worth, loss, faith, perseverance, and mental health through the experience of a teenager.  ‘Eye Can Write’ – Jonathan Bryan – ISBN 978-1-91160-078-7   A true story of a child growing up unable to speak or communicate, then given the tools and belief to release his potential and unlock his communication. A personal and powerful story.  ‘The Story Behind The Songs’ – Kat Mills – ISBN 978-1-9160-7440-8   Written by adult who identifies as Autistic and also has Attention Deficit Hyperactivity Disorder (ADHD) and Sensory Processing Disorder (SPD), sharing the related stories behind some of her highly acclaimed and successful songs.  ‘The Life You Never Expected’ – Andrew & Rachel Wilson – ISBN 978-1-78359-352-1   Sometimes as parents you end up living the life you never expected, as the writers did when both their children were diagnosed with additional needs. This is a story about surviving and thriving.  ‘Shattered’ – Rachel & Tim Wright – ISBN 978-1-78259-896-1   This is not a ‘fix it quick’ kind of book… this is the book you want when your dreams seem out of reach. Bravely honest, funny, faith filled, and refreshing.  ‘A Boy Made Of Blocks’ – Keith Stuart – ISBN 978-0-7515-6327-6   Inspired by the author’s experiences with his own son, this book is a moving, hilarious and most of all true-to-life story of love, family, Minecraft, and Autism.  ‘One Thousand Gifts’ – Ann Voskamp – 978-0-310-32191-0   A book that will challenge you to look differently at each day, to count your blessings, to live fully right where you are. It will help you look away from the dark places and to see the glimmers of light.  ‘Forest School and Autism – A Practical Guide’ – Michael James – ISBN 978-1-78592-291-6   Michael James runs his own Forest School in Somerset. He has 15+ years experience working as a support worker for Autistic people and is a member of the Forest School Association.  I hope you enjoy these book list recommendations and find them helpful. If you know other parents or carers on a similar journey to yours, why not start a book club and meet over a coffee to chat about the books you’ve read!    Happy summer!  The post Summer Holiday reading for parents and carers of children with Additional Needs appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/summer-holiday-reading-for-parents-and-carers-of-children-with-additional-needs/

Why is my child the shortest in the class. A slowing of growth can be noticed from around age two, it’s usually diagnosed when children start school and their height is compared to others their age, or at puberty when short children can become self-conscious, or subjected to teasing. The post Why is my Child so Short? appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/why-is-my-child-so-short/?utm_source=rss&utm_medium=rss&utm_campaign=why-is-my-child-so-short

Since the Dude was tiny he’s struggled to cope with hot weather. We dreaded summer during his early years, it was a never-ending battle to try and keep him comfortable and not over-heating… a guaranteed seizure trigger. The poor child was in and out of seizure constantly. He loathed it, we loathed it. It was miserable. During the summer of 2014, when he was 3, we were on holiday with my parents. Those who remember that year will remember that although it wasn’t record breaking as such it WAS consistently very warm all summer. Sam was lethargic, seizures were off the scale and we’d exhausted all the usual suggestions for keeping the little chap cool. In desperation, an online order to Argos was made for a small, toddler-size paddling pool. Knowing how much this child HATED being in anything but the warmest of waters, we were not overly optimistic that he’d tolerate it, but as I say we were desperate. It was a game changer. He spent that summer happily lying in his pool, splashing about, keeping cool. His seizures calmed down, he slept better, he was happier. We have never been without a pool since. This July, the UK is due to turn into a hot box for a few days as temperatures soar to over 30 ֯C – today has hit 38 ֯C. I am currently typing this at 22.14, and its STILL 27 ֯C out there. I won’t lie; while I like the weather hot and sunny I was more than a little concerned about how my boy would cope. Last year, as he’s now substantially bigger than he was, we had to upgrade his old inflatable pool to a larger one and its been up and ready for the last couple of days in preparation for this heatwave. We still use other methods to tackle the – he has a fan in his room, we keep his curtains firmly closed during the day, and when its as hot as it is currently a bowl of ice/water in front of his fan works wonders at cooling the air. But just like when he was teeny, the thing that reliably helps him cope in this weather is getting in a pool. It brings his core temperature down, he gets to play and splash about, and best of all he uses his limbs. Doesn’t sound much does it, but for him its huge. He builds strength playing in the water, learns how to control his arms/legs. Its physio, by the backdoor, and I strongly approve! The post Heatwave! appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/heatwave/

There appears to be a bit of a misconception amongst our local community (and indeed further afield.) You see, recently I saw uproar on social media about the recent cost of living grant issued to many homes across the UK. The money was intended to help those with financial difficulties cope with the sudden rise in costs of UK living. The media did not help with its phrasing of headlines clearly designed to cause anger and provoke a reaction. People took to the keyboard slating all recipients as “lazy”, “spongers” “scroungers” and well, other things that wouldn’t be very nice for me to type here. Much of it was directed towards people in a similar position to us. A position I never expected to find ourselves in. I watched as people defended why they needed that money. I watch people enraged because they work long hours everyday and “get nothing”.  I saw some really, really unpleasant things being said. There is a definite attitude that people with disabilities are just given “free money” or “free housing” or “free stuff”. I recall a post a long while ago where someone outright suggested that people with autism are given free toys and everything they need. So I suppose my question is - where can I sign up for this free lifelong money please? It sounds wonderful. Jokes aside, financially things are tougher than ever for so many of us. We recently had problems submitting a new gas meter reading and our “smart” meter had stopped working. We got it replaced to be told we owe £79 000! Imagine our surprise! Thankfully after a few weeks of back and forth emails and calls we were informed we actually only owe £797. (Only! She says, as if she has more than £2.70 in her bank account right now.) You see families like ours have much higher operating costs! A height adjustable hospital bed, a feeding pump, suction machine, ceiling mounted hoists, constant kettle boiling for sterile water for tube feeds, the extra washing, the extra showers, the stoma site care and management. I could go on and on. Everything needs charging, or some sort of regular maintenance that requires some form of energy. Hospital stays. This requires so much more money than you would expect!  Days out. Fuelling a wheelchair van that has to transport a big heavy wheelchair and medical equipment everywhere. I think though, unless you live our lives, you can never truly understand the picture I am trying to paint here. Families are scared. How will they heat their house this winter? There are people choosing between food and heating.  Of everyone I know in a similar situation, I think generally they would all tell you the same thing. They would tell you that working full time is a privilege. They would tell you how much they miss work. The productivity, the distraction, the social aspect, the money, and so many other things. They’d tell you that they miss being able to leave the house with purse, phone and keys.  That they miss every phonecall causing that sick feeling in their stomach. “Oh gosh, not another ambulance is it? Is she okay?” They miss being able book time away at places without researching for months about adaptations, grants, and whether or not they can afford it let alone manage without the care and respite they qualify for. One of the biggest lessons I have learned in the last 8 years was not to judge. I remember being a full time employee in an office. I cringe telling this story… but I remember one day having a bit of a rant and outburst about the amount of charity fundraising we constantly did. It was always sponsored run here, bake sale there, non uniform day this, mountain hike that. To my defense, at the time I was pregnant and saving every penny to pay towards a deposit on our first house. I had done 60 hour weeks and the exhaustion was getting the better of me. So what I am saying is - I get it. I understand fully why people are angry.  I realise now though that their anger is very much misplaced. That £326 doesn’t even go half way to paying the energy bill that just shot up. I can’t just go and do some overtime. I can’t go and get another job, much as I would love to. I tried working a few hours a week a few years ago. It was a disaster. I would regularly come in absolutely exhausted with carer burnout from lack of sleep and constant medical intervention etc. Or I would be unreliable due to my daughter’s constant chest infections and seizures. It caused so much stress. Pay day would come. I would be excited to be earning my own money again to find that my earnings meant less universal credit payment. I realised that I was basically working for free whilst everyone else around me got paid… and yet none of them were providing 24/7 care to a very medically complex dependant. In addition to this, since the pandemic, charities have been impacted massively financially. Lack of funding can mean that eligibility criteria becomes much harder for people to meet and thus more people are unable to access grants that previously they had qualified for. At night I worry constantly. About society's judgment of us. About what I will leave when I am gone. About money we will never have. I know in my heart that carers contribute a tremendous amount to our community. We save our government millions every year. We don’t get sick days, we don’t get annual leave. We don’t get an appraisal and often suffer with isolation, lack of self worth, and also worse health. We don’t get a nice pension plan. We do what we do through necessity and also love. We don't live in free big, fancy houses. Many of us have had to sell our unadaptable homes that we had worked so hard for. Many of us have had to campaign relentlessly to get the adaptations to our homes that we need to safely care for children. No one is just "given" anything. Many live in unsuitable, cramped housing, unable even to get a wheelchair through the door. Services are constantly under threat for us. We worry constantly about respite funding, transport and education funding, NHS funding and so much more. It's mentally exhausting worrying the amount we do. We feel constantly like we need to defend anything we get, no matter how little it is. So if you're reading this but not in our position, I really would implore you to have a little more and compassion and actually to become an ally of ours. We are not the enemy. Do not believe the headlines when they're out to get clicks and comments. Think about what we go through each day and celebrate actually how beautiful and precious life truly is. The irony of all of this is that actually now I would be a better employee than ever. My admin skills are second to none, I am more patient than ever, I am more direct and efficient, I am skilled in many areas. I am so much to my daughter. I can do medical procedures and interventions I didn’t know existed, and never thought I would master. Be kind to yourself. You are doing absolutely brilliantly. What the outer world thinks is of no consequence. You know your own truth and importance. I know that there will people who disagree entirely with everything I have written here. But know that I do see both sides. And know that until you walk a mile in our shoes that you can never truly comprehend how our lives look. The post The cost of caring appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-cost-of-caring/

A Poem Dedicated to the Parents of Special Needs Children and Mother Teresa

“Phew! Wot A Scorcher!” screams the newspaper headlines as the temperature rises to new record levels once again, but for families with children with additional needs, the screams are all too real as they and their children struggle to cope with the heat. So, here’s some links to places that families of children with additional needs can go to get some help and advice as we all try to support our children… Mummy Est.2014 This is a great website for families of children with additional needs, and a recent blog post is packed with helpful tips to cope with the heat. Heatwave with kids: Ways to handle a heatwave https://mummyest2014.wordpress.com/2022/07/16/heatwave-with-kids-ways-to-handle-to-heatwave/ Red Cross Always a useful resource for health and safety tips, the Red Cross website has a great article with seven things to remember in a heatwave. Heatwave UK: Top tips for keeping cool https://www.redcross.org.uk/stories/health-and-social-care/first-aid/beat-the-hot-weather-top-tips-for-staying-cool BBC News The Disability area of the BBC News website is always worth a look, and it currently has a really helpful article about cooling solutions for disabled people of any age, including children. Disability and the heatwave: Cooling solutions and disability as weather alert goes red https://www.bbc.co.uk/news/disability-62136032 The SEN Resources Blog Another useful website for families and carers to explore anyway, but the SEN Resources Blog also has this useful article to help keep our children cool during the heatwave. How To Keep Kids Cool During The Heatwave https://senresourcesblog.com/2022/07/16/how-to-keep-kids-cool-during-the-heatwave/ And finally… here’s some resources from Twinkl to help to explain about the heatwave to your additional needs children… Twinkl Lots of resources including visuals to help you to explain about the heatwave to your child https://www.twinkl.co.uk/search?q=heatwave&c=244&r=parent I hope this provides you with a head start as you look to keep your child with additional needs safe and cool during the heatwave, and as you help them to understand more about the heatwave too. Keep safe! The post How to cope in the heat with children with additional needs appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/how-to-cope-in-the-heat-with-children-with-additional-needs/

Sometimes it’s very easy for us parent carers to get caught up in the negatives of dealing with the various systems around us. The fight for limited resources, constantly chasing up reports, equipment or appointments and even having our child’s needs denied can be disheartening and exhausting. It can feel like we are demanding the moon on a stick merely by asking for what our child is legally entitled to.  It can be like a big dark cloud over us. But the cloud sometimes masks the positive moments when someone does connect with us, provides us with exactly what we require or ‘gets’ our child and their needs.  So I’d like to take a moment to thank the people in our lives for whom I’m thankful: Thank you to the paediatrician who, in a recent appointment, asked me what I’d like to be called (‘I can’t just call you mum the whole time’), took time to speak to my son in a calm and non-rushed way, and responded promptly to all agreed actions. Thank you to the speech and language therapist who enjoys working with my son. Hearing the two of them laughing away during their sessions warms my heart. Her advice and expertise, particularly in the early years, helped me better understand the processing difficulties he experienced and the need to allow him time to respond. Thank you to the occupational therapist who taught me about proprioception (body awareness or sense of our body) and how important this is for children with cerebral palsy and other sensory needs.  This helped me understand how discombobulating it can be for my son when things suddenly appear in his personal space. I also appreciate her inventiveness when we need to troubleshoot a particular challenge that arises in family life.  Thank you to the teacher who took the time to check in on my son and us as a family while we were recently self-isolating at home with covid. Thank you to our carer who knows how to support each of my children recognising their individual needs.  Those people who realise that it can be invasive to have someone in your home and adjust their behaviour accordingly make life so much easier. These things are often small and don’t cost extra money.  The things I’m grateful for involve people being sensitive and empathic, able to relate as a human being and doing their job properly. Small, yes, but the rewards are significant to us and our family. There is a free download for education, health and social care professionals on supporting parent carer wellbeing here . We might not always notice these things in our everyday life but by stopping and reflecting once in a while we see there are many things to be grateful for. And this can have a positive effect on our emotional wellbeing. What are you thankful for? You can find more parent carer wellbeing tips at www.affinityhub.uk . The post Thank you: 5 people I’m grateful for appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/thank-you-5-people-im-grateful-for/

POEM Come Touch His Cheek by Gary Shulman, MS. Ed. - Special Needs Consultant and Trainer

After the chaos of the last two years (yes covid, I mean you) it was lovely to actually sit IN THE SAME ROOM as the Dudes form teacher and teacher for the visually impaired (theres a mouthful if ever there was one), and go through the progress he’s made this last year in preparation for him moving up to high school in September. These ladies have been with my boy for a long time – his VI teacher for example has supported him since he was 3 years old, so moving on and leaving her behind is going to be a wrench. Together with his teacher, teaching assistants (there have been many) and other lovely staff who have worked with him since he started at this school, they have not left a single stone unturned in their efforts to find what worked best for him. I still remember his first proper session with his VI teacher in early years. She came prepared with a massive cardboard box, all blacked out inside to really heighten the contrast for him; she had a range of toys from cheerleaders pompoms in tinsel, light up toys, brightly coloured wiggly things… she had a fight on her hands as all the children wanted to play! A chance conversation with her highlighted my boys love of LEGO; at his next visit from her she brought light up LEGO blocks, to see him suddenly ‘switch on’ and use his vision purposefully was nothing short of incredible. It is beyond nerve-wracking to leave behind these amazing people who have loved my son as if he was one of their own, and who have given him so much over the last 8 years. Currently he’s one of the bigger kids, in September he’s going to be one of the little ones again. It is very clear to everyone that our boy is ready to move up to high school but it really does feel like the end of an era. As we were finishing, his VI teacher smiled and said her go-to memory to show how far our boy has come is from her first meeting with him; ‘when I first met him, it took 5 minutes for him to be able to focus on an object. When I assessed him recently, it took 40 seconds’. Proud? You’d better believe it. Dry-eyed? Not a chance. The post End of an Era appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/end-of-an-era/

Back in June, we had Carers Week; for me and Mr V, and millions of others, every week is carers week. No parent chooses for their child to be born with a life-limiting condition or disabilities. Likewise, no parent would ever choose for their child to develop these as a result of illness, accident or another cruel twist of fate. But it happens. And when it does you find yourself in a world of medical terminology, testing, grief and often fear for the future. But there is also hope. This isn’t a club anyone plans on joining, but once you’re in, you’re a life-long member. The other members are pretty awesome and will show you that being a carer is not only an incredibly worthwhile role but comes with a huge amount of positives that help to balance out the difficult bits. True, it is exhausting (mentally, physically and emotionally), and will take a level of courage and strength on your part that you never thought you had. But you will find it, and then some. Being a parent-carer will open your eyes to a different world, one where no achievement is considered minor or insignificant. Every bit of progress is celebrated, every individual is valued and loved for who they are not what they can or can’t do. It will teach you what it means to love unconditionally. You will experience the kind of highs that make you feel like you’re soaring, and while the lows will take you deeper into the abyss than you imagined possible there will always be others there ready to sit with you in the dark and to help you climb back up again when you’re ready. Every time your child does something that others take for granted you will want to punch the air with pride and joy because you KNOW how hard won that victory is. You will learn greater empathy, how to advocate for those who need you, and you will become your loved ones greatest champion because they are yours. The Dude is blessed to have a huge number of people in his corner, who love, support, encourage and cheer for him… but I count me and his Dad as the lucky ones. Because we were blessed with this amazing, bright, gentle and happy little boy. To those just starting on this journey as carers I can’t promise it’ll be easy. But I absolutely promise that it will be worth it. The post I can’t promise it’ll be easy, but it will be worth it appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/i-cant-promise-itll-be-easy-but-it-will-be-worth-it/

Sometimes there are no words...

'Special:' A Poem Written By a Mom For Her Special Needs Son. By Marla Murasko | Down Syndrome Parent Influencer & Lifestyle Blogger, Health Advocate, Author & Speaker

Do you consider your furry, feathered or scaly friends as family pets or part of the family? Either way, having pets has numerous benefits for your children. The bond between humans and animals is a special one. Sharing your home with family pets provides health and psychological benefits for the entire family. And, children who […] The post How Family Pets Can Benefit Your Children appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/how-family-pets-can-benefit-your-children/?utm_source=rss&utm_medium=rss&utm_campaign=how-family-pets-can-benefit-your-children

Do you consider your furry, feathered or scaly friends as family pets or part of the family? Either way, having pets has numerous benefits for your children. The bond between humans and animals is a special one. Sharing your home with family pets provides health and psychological benefits for the entire family. And, children who […] The post How Family Pets Can Benefit Your Children appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/how-family-pets-can-benefit-your-children/?utm_source=rss&utm_medium=rss&utm_campaign=how-family-pets-can-benefit-your-children

POEM Going to Holland (Emily Perl Kingsley)

POEM Ode to Special Moms (by Erma Bombeck)

Poem My Special Little Boy (For my beautiful son Jack, by his proud mum Nicki Zieth)

Poem The Blue Rose by Gerda Klein

The beach has been my backyard for the past 20 years, but it was only when my son was born nine years ago that I really started to make an ally of the ocean. Having had many sorrowful experiences at soft play sessions, baby groups, and library sing-songs, I soon realised that our true sanctuary was the beach. My baby, still undiagnosed, was struggling to find his way in the world, inexplicably not conforming to societal expectations. But through his blue space, he found his safe-haven, unchallenged by cultural expectation. In his primal state of infantile exploration, the beach became his chosen playground. Unwatched by his peers, who had achieved it far, far sooner, he first learned to roll back-to-front and back again, when lying on the soft forgiving sand, encouraged by the natural cambers that had formed the night before. His first experience of independent mobilisation was similarly exhilarating, a few months later, down the very same cambers, on his bottom. He would sit on the water’s edge for hours, the tide tickling his toes and the salty spray decorating his face, such effort taken in propelling himself just a few taxing feet forward and backwards, left and right, rogue waves catching him out and knocking his tiny and unsupported body to the floor as he giggled and gurgled in the water. He would sleep his best sleeps on those nights, sapped and satiated by his time in the blue. I loved the lingering taste of sea salt on his nose as I kissed him good night. I would really enjoy those times alone with him, escaping the pressures of new-motherhood by avoiding the inevitable conversations with fellow mums about milestones and progress and the looks, sighs, words of wisdom and sympathy. I welcomed its predictability, its consistent terrain, total neutrality, lack of territory or ownership. Every visitor comes with no greater or less entitlement to its offerings, just to borrow a bit of beach for as long as they choose, no booking system or timeframes to conform to, and no unexpected factors to scupper plans. In pastimes I had been a nervous visitor of the ocean, feeling like an imposter in a foreign and hostile body of water, anxious of its unpredictable movements and volatile behaviour. But while my son’s affinity with his blue space was showing no signs of abating, my own trepidation of the sea was swiftly diminishing, through the sheer non-negotiable responsibility placed upon me to facilitate his only true love and connection with nature. As a family we were happiest on the beach; the non-judgemental landscape was such a reprieve from the everyday challenges we encountered in our urban world.   His love of the waves was indiscriminate and in fact it was the days where the sea was at its iciest, stormiest or angriest, that he would shriek with joy the loudest. With my firm and protective hands round his waist, he would swim and splash, kicking against me to push farther out towards the blue horizon. I am unsure at what point I realised that he was swimming on his own, but it was certainly a long, long time before he could walk. His self-taught writhing, flapping and ungainly movements were somehow propelling him through the water, and alarmingly most of the time in an underwater motion. It was a challenge to remove him from the sea, as he would happily stay for hours, but the blue of his lips and the wrinkles in his digits indicated he needed reacclimatising. We would wrap him in his robe and he would shuffle to his same favourite spot and lie on the warm sand, slowly returning his body temperature to its regular state. At times we were guilty of overstaying our time in the water; the intensity of his enjoyment obscuring the signs of hypothermia, and his inability to self-regulate, identify and respond to, his own needs caught us out now and then. My boy is now nine and this Spring will see our tenth year of enjoying family time on the beach. Now a fully mobile, sociable and inquisitive child, he knows no social barriers, usually befriending a dozen families and as many dogs with his charming and convivial personality on any given day. His inability to grasp the concept of personal space and belongings has left us having to explain and apologise to strangers on numerous occasions about their punctured beach ball or flattened sandcastle structure. But mainly we find that people are beguiled and captivated by his gregariousness and loving manner and will happily share their borrowed bit of beach with him, and surrender their buckets and spades. So, I look forward to another season of sea, sand and sanctuary, in the one collective place that we can spend time as a family, unjudged, safe and content, with each of us in our true happy Blue Space. The post My Water Baby: The Therapeutic Power of Blue Space appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/my-water-baby-the-therapeutic-power-of-blue-space/

When people talk about accessibility the tendency is there to get a bit, well, technical. There are times when a lot of careful planning is needed (Changing Places toilets, wheelchair-adapted play equipment for example), but not all access issues are so complex to solve. We are lucky that we live close to a nature reserve. As a family with a dog, one of our favourite activities is to go out walking. We love being able to take the Dude out in his wheelchair, and as more and more places understand the importance of wheelchair access in terms of paths our options to go out walking with the dog are increasing. Unfortunately, whoever designed the access to the reserve hasn’t thought this one through as there is a permanently padlocked metal gate across the entrance and the only way round is across the make-shift bike access created by other walkers/cyclists/horse riders who use the bridleways and paths. The gate may prevent unauthorised vehicles, but it also makes it virtually impossible for all but the fully able-bodied access the public walking routes. Wheelchairs, pushchairs and the less-mobile need not apply. Another example is the humble picnic table. Often, Sam ends up stuck on the end as its impossible to get his chair anywhere closer. One of our favourite haunts (the wonderful Trentham Gardens in Staffordshire) not only has a Changing Places loo but has recently added these lovely wooden picnic benches which are designed to accommodate a wheelchair user. After all, it isn’t just disabled children who use wheelchairs – elderly relatives, adults with mobility issues, individuals post-surgery… wheelchairs are a common mobility aid, and no-one (I repeat, NO-ONE) wants to feel like an afterthought. It genuinely means a lot to families like mine when companies or attractions think about issues like this that may not seem big to many. To us, knowing that our loved ones can be included and that someone has thought about this means the world because to us, they ARE the world. The post Accessibility doesn’t have to be complicated! appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/accessibility-doesnt-have-to-be-complicated/

An letter to mothers of children with autism  This is for all the mothers who are considering getting their child diagnosed or who are coming to terms with a diagnosis. It is a reminder to celebrate diversity. Long before I received my diagnosis from the doctors, I knew I was different and that my life […] The post Celebrate diversity appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/celebrate-diversity/?utm_source=rss&utm_medium=rss&utm_campaign=celebrate-diversity

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/

Poem Special Angels by Juanita Vaughan Hopkins

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/

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/

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/

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/

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/

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/

Poem I am the Child

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/

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/

Poem Think of Me First as a Person (Rita Dranginis)

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/

Poem by unknown What You Should Know About My Child

Developmental problems affecting your child’s speech should be checked out and appropriate therapy prescribed where necessary. The post When Words Don’t Come Easy appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/words-dont-come-easy-2/?utm_source=rss&utm_medium=rss&utm_campaign=words-dont-come-easy-2

On a challenging journey, you need partners you can trust. In this episode we discuss how to know who you can trust. Spoiler alert: Being related to someone by blood doesn't necessarily qualify them for the job of confidante! Who to trust? - YouTube The post Latest Podcast: Who to Trust appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-podcast-who-to-trust/

We look at basic questions about autism, to better understand this disorder. The post Understanding Autism appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/understanding-autism/?utm_source=rss&utm_medium=rss&utm_campaign=understanding-autism

Poem Heaven's Very Special Child (in Memory of Jeffrey Ratliff--a very special child)

A Butterfly in the Wind Poem by Unknown

Food is a very loaded topic. Because everyone must eat in one way or another, we all come to the table with baggage. In this episode, we discuss how to break bread without judgment from ourselves and others. Food, Glorious Food - YouTube To catch up with the rest of the episodes you can find them on the 2 Moms No Fluff YouTube Channel bit.ly/2momsnofluff Enjoy! The post Latest Episode: Food, Glorious Food appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-episode-food-glorious-food/

The playground is a natural environment for kids of all ages.  It’s a place where kids can congregate in open spaces, and where there’s something for everyone. Here’s another instance where planning ahead, problem solving, and creativity comes in handy for parents of children with additional needs. The possibilities are endless.   Some children swing, climb, walk, kick a ball, and slide. While others move about, explore and experience this setting in a different way.  Although there are some physical obstacles to conquer, all the above are activities that children of all abilities can enjoy. And when you see the smile on their face, you will be so glad that you made the effort! The playground is a world for exploring For children who are ambulators, the playground offers unlevel surfaces such as mulch, grass and/or tire tread to walk on.  Walking on this type of surface helps develop balance.  If a child is not yet an ambulator, there are many large pieces of equipment that your child can hold onto, lean on, or climb on. This can also help develop strength and balance. If your child can grab something, they can try to move around on their own, navigate around obstacles, and explore their environment. Then you can assist as needed. For children who are not ambulators, there are numerous spots in the playground that can provide support for them in a supported sitting position. The grass is a front row seat to the action around them.  Sitting in the grass is not a static activity, it involves gazing, tracking, head rotation, trunk rotation, arm movements, and often smiling.  From a sitting position in the grass your child will have easy access to safely move around and experiment with body movements. The barrel swings and rocking toys can be modified with blankets for extra trunk support, and gliding movements in any direction is just plain and simple fun! Balls, bubbles, and blankets Balls, bubbles, and blankets are a welcomed pastime for all children. The playground is a place where children gather and where they can learn from one another. Where they can move around using a carriage, a walker, a scooter, a bike, or a wheelchair.  Regardless of the activity, being out and about is another opportunity for a child to be around their peers. It’s a place where kids can learn how to share, learn acceptance, develop empathy and social skills.  Each day at the park is a new experience, because the people, the activity and the environment is constantly changing.  So, pack up some snacks, some drinks, and some toys, SPRING into a new experience with your child, and take them to the park or playground!! The post Spring Forward - To The Park appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/spring-forward-to-the-park/

We are all sensory creatures, exploring, understanding, and engaging with the world through our many senses. This is just as true for someone has additional needs as it is for anyone else. Sometimes we can be under-responsive (or hypo-sensitive) to sensory inputs. At other times we can be over-responsive (or hyper-sensitive) to sensory inputs. You can see some of the effects of this in the picture of the person below, used to illustrate different kinds of sensory processing disorder. One of the examples given is, “I hate having my hair cut, washed or brushed”. Haircuts can be a very difficult experience for children and young people with a range of additional needs. The sensory feeling of the hair being cut; the bits of hair going down their neck or landing on their face, the noise of clippers (especially around their ears), or just the very difficult feeling that a part of them is being cut off and is now on the floor! Set calming conditions for haircuts In our case, our son James will only tolerate having his hair cut under very specific conditions. His need for a haircut having reached the point where it was unavoidable any longer meant that those conditions needed to be met a couple of days ago. The conditions are that James must have his hair cut on his sofa, which is his favourite, safe, place. Next, I must be the barber, and his mum must assist by collecting all the bits of hair up as they fall. We use clippers, grade 4 all over, the only style I can do. James has something that he likes on his iPad as a distraction while the haircut is done. Mum must make sure that any bits of hair falling on the iPad are removed immediately! The danger zone We start at the back, out of sight, to get used to the clippers again. And then do the front, leaving the difficult part around the ears until last. When the rest is done and only the hair around the ears are left, I am always nervous that James will refuse to go on and will have the weirdest hair style in town! With the soundtrack to the film ‘Top Gun’ in my head, we take the clippers into the ‘Danger Zone’ around the ears! Usually there comes a point when the worst is over and it’s just a matter of tidying up. Checking that the two sides are level, that the back looks neat, and that I haven’t missed any wispy bits. If we don’t finish these areas then it’s not the end of the world. But usually with some encouragement, and the reassurance that we are done with the ‘Danger Zone’ then we can finish off. Lots of positive praise A bath straight away afterwards to help remove any scratchy clippings is helpful and then we are done. We give James lots of positive praise for coping so well. A reward of his choice, and then showing him how much smarter he looks, usually gets a smile! Routines are important. When followed well, can help to ensure that even difficult experiences like haircuts can be coped with and completed well. We only cut James’ hair every three to four months. There is plenty of time for any imperfections to ‘grow out’ and for him to be ready to accept the clippers again! What haircut stories do you have? How do you support your child or young person when they need to have their hair cut? Keep snipping! The post How Happy Haircuts Happen appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/how-happy-haircuts-happen/

Springtime means that it’s time to get outside.  It doesn’t matter where you are in the world, everywhere you look; there are trees and flowers blooming and growing, just like your little one.  Raising a child with additional needs often means that you may have to modify the environment or the activity, to make it accessible to your child. The colorful landscape, and endless outdoor experiences, offer any family a great opportunity for storytelling, imaginative play, and new experiences. Sensory garden activities The mild weather and longer days are perfect for gardening activities.  Some activities such as digging, planting, or weeding offer some great opportunities for fine motor developmental, upper extremity muscle strength, and motor planning.  Your child can help with watering plants, bushes, and flowers.  There are so many ways to water the plants. One can use a hose, a watering can, a plastic water bottle or using a cup and a pail of water.  Either way, your child will be thrilled to witness the changes over time, just from their watering. They’ll also be proud to be ‘your helper’.  If your child is a bit older, this is a great time for them to participate in outdoor experiments or art projects that are just too messy to do inside.  One of my favorite outdoor activities includes a water sensory table with a theme (such as small plastic animals, shapes, or colorful ping pong balls).  Another great sensory activity for all ages is simply standing a piece of plexiglass up against the house.  Your child can be sitting, in supported sitting or standing, or standing independently.  Spray shaving cream on the plexiglass, let your child create a masterpiece, rinse, and repeat.  Every nature walk outside can be a visual extravaganza Every nature walk outside can be a visual extravaganza.  The colors everywhere, the abundance of different hues of green, the people that are out and about around. These all create some pretty neat things to look at, talk about, draw, or to visually track.  Each experience, be they tactile, auditory, or visual creates an empty canvas for you and your child to design.  The more they experience, the greater their memories and feelings on which to build upon.  Experiencing nature at its best is low cost, convenient, and so exciting Experiencing nature at its best is low cost, convenient, and so exciting. As a caretaker, here are simple things to consider during this season.  What brings you joy outside? Is there any equipment you need to help your child experience the outdoors? What’s your child’s favorite activity to do outdoors? Is there one novel experience that you can share with your child this season?  Spring: To leap, jump or move forward. How will you help your child leap, or move forward into this season? The post Springtime is a real time sensory experience appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/springtime-is-a-real-time-sensory-experience/

The Easter school holidays are coming up fast, so here’s some fun sensory ideas to try with your children to help them think about spring! Sight Spring is the time when all the wildlife wakes up after the winter. If you have a garden or can get to a local park, you will be able to find all sorts of creatures. From creepy-crawlies hiding under stones to beautiful birds, and maybe some animals like a squirrel or a fox. See how many different creatures you can find and try drawing a picture of them to help you remember what they looked like. The Wildlife Watch website might be able to help you identify what you’ve seen: https://www.wildlifewatch.org.uk/wildlife-zone/identify-wildlife Hearing Depending on where you live, you might be able to hear birds singing. This can be increasingly common in the spring. If you have a local park, or if birds visit your garden, listen to hear their songs. How many different ones can you hear? If you want to identify what birds you heard, or if you can’t hear the birds near you because of other noise, here’s the RSPB ‘Bird song identifier’ website that can help you! https://www.rspb.org.uk/birds-and-wildlife/bird-songs/what-bird-is-that/ Smell Either in your garden if you have one, or in a local park, find some spring flowers. There are likely to be crocuses, daffodils, maybe even some tulips. Smell their scent and enjoy how lovely it smells. How many different flowers can you find? Take photos of them so that you can remember them all. To help identify what flowers you have found and smelled, the Royal Horticultural Society (RHS) has a website which can help: https://schoolgardening.rhs.org.uk/Resources/Spotter-Guide/Spring-flower-spotter Touch While you are out in the garden or the park, can you find some different things to touch, like a piece of bark, a pinecone, a smooth stone, a snails shell, a dandelion, or some grass to stroke. Try and find as many natural touch sensations as you can. You could also have a go at the ‘Spring Guess? Bags’ idea here: https://simpleplayideas.com/sense-of-touch-activity-touch-of-spring Taste Once you’ve got back indoors from your spring adventure, maybe you could try some taste activities too. Have a selection of different taste sensations, something sweet, maybe some Easter chocolate or some honey. Something sour, maybe a lemon or some sour Haribo's. Something salty some crisps or snacks. And then something savoury, some cheese. Have some different fruit and veg options in there too. What taste sensations do they prefer? Here’s a simple tasting exercise that might help: https://www.patiencefruitco.com/en-us/the-patience-club/tasting-exercise/ I hope you have fun exploring Spring through your senses together! The post Sensory Spring Fun appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/sensory-spring-fun/

2020 was a year that changed everything for the whole world. The past two years have been scary, between trying to keep families together and safe without knowing what lay ahead or what the outcome would be. A constant threat of contracting a virus that the medical profession knew little about. But it’s not what I primarily think of when people speak of 2020. Why 2020 was such a bad year for us Why? Because that was the year our son’s epilepsy and hydrocephalus went out of control. He was having almost constant seizures and needed to be transferred to resus at the regional children’s hospital on numerous occasions. It got so bad that the local paramedics would come in and say, “how many this time?” and just help me out to the ambulance. Being greeted at the doors by a resus team was terrifying. It happened more times than I care to remember. He was transferred from our closest hospital to the regional one. They felt he would need to be put into an induced coma and cared for in PICU because they just couldn’t get on top of the seizures. I really thought we were going to lose our precious boy. We were in and out of hospital constantly and with the threat of covid-19 hanging over everyone, it added more pressure to an already desperately hard situation. It turned out he needed two shunt revisions in August within 48hrs of each other and then another in November. Despite him having seizures that do not leave him deprived of oxygen to his brain. He suffered massive regression of skills and escalation of behavioural difficulties. An MRI of his brain showed no changes, but the team felt it had all just been too much for an already compromised child to cope with. Things have started to look up He was moved from a mainstream to special needs school after educational psychology said he was in a “trauma response” and needed pastoral care more than delivery of the curriculum. In hindsight, it was most definitely the best thing that could have been done for him. He’s now been in that school for a whole year, and we feel we’re getting our happy boy back! He is making friends, especially a special little girl who sits beside him. Apparently, they are getting married, although the jury is out on where they’d live since Jacob wants a treehouse and his love would like a castle. As our son started to heal, I feel like I have too I feel the teachers have just “got him” and have worked on a very simple behavioural plan that is now carried over to home as well. He has done so well with it. All we need now is a little laminate on the back of his wheelchair to visually remind him that he gets two “warnings”. Which are yellow faces, before a “consequence” of a red face. He still has meltdowns and sensory issues, as well as times where he “zones out” and can’t cope. These are getting fewer though and I feel like I know how to cope with them better. He sees a psychologist in school who he calls his friend because they play games together. She has helped him so much! As he has started to heal, I feel I have too. We are though the worst of it now, we are so grateful We will always remember 2020 as the year he was so unwell. But I know that millions of families across the world experienced much worse than and have lost loved ones. We feel like we are through the worst of it now and can enjoy things together as a family of five again which, is something to be hugely grateful for. The post What do you remember? appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/what-do-you-remember/

Recently it was “dress to express” day at school whereby children’s mental health earns a day on our calendar, and we reflect on those challenges that children often face. You can have all the awareness days in the world but without the actual ability to help, drive change, and receive vital services - what is the point? It came at an apt time really because after years of refusing sedatives for Amy to help ease her violent and distressed outbursts - I finally admitted defeat. It’s heart-breaking to watch and nothing we do seems to calm these events Amy often gets so angry (especially around bedtime and through the night) and will rip out her hair, scratch her face, kick the bed doors loudly and scream. She managed once to knock off her big toenail. It’s heart-breaking to watch and nothing we do seems to calm these events. It sometimes happens on days out where she can’t cope with the activity or environment too. Not only is it hard for her, but it can also be really isolating for us. We also can’t leave the house with her after a certain time too. So, we finally agreed to try the medication and use it as sparingly as we can. It’s hard to strike a balance because no I don’t want to “switch her off”, equally is it fair for her to be experiencing this level of distress? I was scrolling through twitter late at night when I stumbled upon the page of someone who described themself as severely physically disabled. They had been having a hard time accessing support they needed for so many things. For sore limbs from muscle spasticity, for reflux, which was causing them pain, and for counselling whereby the counsellor would have an understanding of what this person encounters daily. Mental health challenges afflict so many people, and we can talk more openly about it now Mental health challenges afflict so many people, and we can talk more openly about it now. This is truly something to be celebrated. But I feel that surrounding disability there is still a stigma.  It has been mentioned by professionals in the past that Amy’s “angry outbursts”, self-injurious behaviours and attacking of those around her relate to communication frustration. She is non-verbal. We are still working hard on communication but it’s proving more difficult that we had hoped. It must be so infuriating wanting to articulate something to someone who allegedly knows you best… and they just don’t get it. With learning disabilities, chronic pain, communication issues, gross and fine motor impairments it is no wonder she often lashes out.  I have searched endlessly for solutions It would be great for her to be able to access talking therapy, or counselling but I know that this is never going to be an option. I had hoped hard that eye gaze technology would have been a success for her and that she would be able to communicate with us. We use symbols on cards but sometimes she won’t engage or is very inconsistent with them. Though she is nonverbal she communicates excellently in letting us know what she wants i.e., iPad, music, change in position, change of pad etc. But further than this we are struggling. Amy is now a big little girl… the hits and kicks are harder, moving her to safety is harder. Some days she seems deflated, drowsy, disengaged from us. I wonder if this is due to seizure activity, is she tired, or is she feeling depressed?  If she could talk, what would she say? Is she happy? In the various cerebral palsy groups, I am part of, I often see parents of verbal children mention that their child is feeling anxious, sad, different etc. I see them trying to find ways to help their child understand their value and worth and that being different is okay. I see parents feverishly trying to find ways to reduce the physical aches and pains that come with the diagnosis. It’s so difficult for everyone and I always read the responses with interest as we are yet to find something that we think will help. If she could talk, what would she say? Is she happy? On social media she appears to be the happiest child in the land, but the reality is different. Our paediatrician has done a referral to HYMs (healthy young minds) which I am informed is a massively underfunded and overcrowded service. It just shows how many children are struggling and need more support. The doctor isn’t sure what they can offer us other than medication, and we have been offered a few that come under the antipsychotic category. I have declined thus far as she has so many medications and I want to try and minimize them. We don’t really know how all the meds interact with each other; I don’t want to make things worse. I've had meetings where professionals have mentioned that she may be suffering with anxiety or depression. It has been brought up a lot. Hobbies and normality are fundamental in aiding good mental health I found a list online that said, “speech and language therapy, educational assistance, support groups, physiotherapy, medication, adaptive sports program, behavioural therapy, social work, psychotherapy”. Seeing this list confirmed to me that we are presently doing all we can to pursue as best possible mental health for Amy. I am hoping this year to try adaptive sports (boccia) and wheelchair bike riding activities with her, and for us to have some lovely family holidays because I sometimes think hobbies and normality are fundamental in aiding good mental health. I often look at Amy, admiring her beautiful little face, and I wonder "what is she thinking?". So many times, I have seen her watch children running and playing at the park and I wonder "does this upset her? or is she just interested?". I have often felt an "outsider" or "different", I get a bit of imposter syndrome too when in groups and I think "ha, look at you trying to fit in and look normal!" So, I do wonder, is she aware of the differences? She certainly gets frustrated fighting against her own body. I find myself too often comparing her childhood to mine. It couldn't be more different. I wanted her to have what I had. But it's just different. I wonder how much of my anxieties I project onto her. So far, I have mainly learned: Do what she loves. Amy has us singing pretty much constantly. When we have done enough singing, the iPad and videos come on. Try to ignore the onlookers. The situation is only made harder by people stopping to stare. It adds to our anxiety which adds to hers.  Ignore all judgment. These people likely have no idea what our life is like. We are just doing what we need to do. If an iPad is needed at a zoo to help her be able to focus on her surroundings, then so be it. If we could have the iPad switched off, we would! Be patient. Obviously, we aren’t saints. There are days where my patience wavers and I just really wish things could be calm. But I’d say we do a remarkable job of keeping calm to help her feel safe. I will always stay by her side or give space when needed. Ask anyway. I ask Amy constantly how she is. Tell her how much we love her. I tell her how valued, important, and amazing she is. Amy has proven so many times that she understands way more than some people give her credit for. Get out and about. Get some fresh air, find those accessible places, and make memories together. Lower expectations. Don’t expect to go to a musical therapy, or disco etc and for it to go swimmingly. Go prepared, accept when it isn’t working and smile through it. You can only do your best. Look after yourself. If you don’t look after yourself, how can you look after someone else? Is there anything you would add to the list? The post Children's Mental Health and Disability appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/childrens-mental-health-and-disability/

Poem Each Child is Different by Unknown