Special needs mothers teach us that love knows no bounds, and the strength of a mother's love can move mountains, break down barriers, and shape a better world for their children.

God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993

Being a special needs parent is a journey that requires strength, love, and unwavering dedication.

“The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It's a trait I wish there was another way of getting, but there isn't.”

21 effective ways to help young children relax at the end of the day and regulate their big emotions.

From the age of 3, my boy has been tube fed. From the start we knew we wanted to give him real food blended to go down his tube – we’d learnt quickly that formula feeds didn’t suit him, a major dairy intolerance meant that he had gastrointestinal upset almost constantly even on the most hypoallergenic of feeds. While his gastro/dietetics team weren’t entirely opposed but weren’t fully behind it either; it took a lot of persuading, cajoling, form filling and agreements that we were doing this against the hospital’s position before they accepted it. You must remember that this was almost a decade ago and it was definitely seen as divergent from the accepted norm, there weren’t many families doing blended and even fewer openly admitted it! Sam is thriving on blended. Not only does he gain weight well, but he doesn’t have a lot of the issues of other tubies (reflux, bowel issues, tissue problems, etc). Over the years, the scientist in me couldn't resist researching links between seizures and food; dairy, soy, gluten and corn can cause an increase in seizures in sensitive individuals so we removed these to see what happened. His seizures improved. Enormously. His diet is phenomenal as there are very few things we don’t blend and we’ve been able to remove foods that he can’t tolerate easily. We do add in a powdered multivitamin, a common issue for children on certain medications is that they absorb lower levels of some vitamins from their food... giving them additional support here just keeps everything as it should be. I'll be blunt, it isn’t suitable for every child. You can’t give blended food down a jejostomy for example. Our son’s issues were never around food tolerance or absorption. It isn't an easy option but no harder than making meals for any child, and the positive impact on the parents/carers of giving them back the ability to prepare meals and feed their child is enormous. In 8+ years we haven’t had a single tube blockage nor illness due to blending; medications however have caused numerous tube issues. Where once it was seen as a militant act to give a child real food through a feeding tube, it is now becoming much more accepted; if families want to try a blended diet and there is no medical reason not to then surely, they deserve the option to try? The post When food is medicine appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/when-food-is-medicine/

With early intervention, the exquisitely nuanced world of communication is well within reach of the hearing impaired The post Helping Children with Hearing Loss Communicate appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/helping-children-with-hearing-loss-communicate/?utm_source=rss&utm_medium=rss&utm_campaign=helping-children-with-hearing-loss-communicate

I was recently scrolling through Facebook and saw a post calling for recognition of the fact that we should refer to people with autism as “autistic” as opposed to saying they are “people who have autism”.  There was also discussion about the term autism spectrum disorder (ASD) causing offence to those affected by it. As a trained learning disability nurse, this confused me. I was taught to put the person first and the need second, for example I am a woman who has Multiple Sclerosis (MS), not an MS person. Our son is also a boy with spina bifida (I’ll not list the rest!), not a spina bifida patient. I don’t work anymore but I remember writing a lot of notes about people who “had autism” instead of saying an “autistic person”. The original post really gave me food for thought. To me, this is a return of language that would have been previously known as offensive to call someone autistic instead of rephrasing this to a person with autism. A mum commented and explained to me that her son has brown hair, blue eyes and autism. It wasn’t a condition to be cured, or something to be ashamed of. I read a lot of similar comments from parents and individuals themselves who all wished to be referred to as an autistic person. Surely this is their absolute right to ask people to refer to them in terminology they find acceptable? It made me think about all the ways people discuss my son. Conversations usually start with “what’s wrong with his legs?” or “why is he in a wheelchair?”. The worst one for me is “can he walk?” because I often find people are so caught up with the idea that being unable to walk automatically means you are unable to be happy That’s simply not true. So many people who are able bodied are depressed while a lot of wheelchair users are not. This situation is obviously reversible, but the point is, I doubt walking is the main deciding factor in good mental health. Historically, people would have used incredibly disrespectful language to describe people with downs syndrome for example, which I’m not even going to repeat because it’s just so appalling to me. There was also terminology to describe those with complex needs that reduced them to being almost subhuman. Thankfully we have moved on and learnt from past mistakes to create a more inclusive society. Having been surrounded by disability for many years now, I am really conscious to try and learn from other people what they want when being talked to or about. The only way we can move towards better inclusion as a society is by listening to the people living that life and learning from their experiences. The post Terminology and special needs parenting appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/terminology-and-special-needs-parenting/

*Trigger Warning: Discusses death* At 100 years of age, my Granda sadly died recently surrounded by his children in his own bed free of pain or distress.

Stories of left hands being tied behind children’s back to force them to write with their right hands are common in the older generation. Thankfully, the left-handed child is now seen less as a sign of something wrong and more as a physical trait. A frustrated parent tells me over the phone: “My child’s teacher […] The post The Left-Handed Child appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/the-left-handed-child/?utm_source=rss&utm_medium=rss&utm_campaign=the-left-handed-child

I recently supported an old friend through some worrying hospital tests for her child. They were similar to ones we’d gone through for my daughter who has a rare and severe form of epilepsy and a learning disability. I found myself offering reassurance; not that everything would be ok with the tests (we did not know that); but that she would cope, whatever the outcome. In the early days of my daughter’s diagnosis, I remember thinking I would not be able to cope with parenting a disabled child. That was when I was imagining what life may be like and what we may be dealing with. In fact, the day to day reality has probably been even more extreme and challenging than I could have imagined. Perhaps the most surprising thing then, is that we are ok. Life is good, we are happy. It can be hard for anyone not in the SEN world to imagine that a life with daily seizures, hospital stays, emergency ambulance trips, cognitive regression, and some seriously challenging behaviours to manage could be a happy one. But our life is happy. Sometimes I find myself looking at other families, families who do not have a disabled child, who on the face of it have the ‘perfect’ set up and still find myself surprised that they seem no less stressed than us, and no happier. I now know why; it’s hidden in something that those in the non-SEN world will never get to experience In our world, we get joy, happiness, elation even, from things that others wouldn’t even notice. I find myself walking to work with a spring in my step as my daughter has not had a seizure that morning; I call my husband in excitement as she just signed ‘home’ for the first time since losing her speech; one of our fantastic carers arrives and we have a giggle about something. Many things I used to worry about don’t get a second thought now. I remember reading on a parenting website in the early days, a comment from someone that said having a child with a disability made them no less happy. I thought that was nonsense, although tried to take some comfort from it. I get it now. I feel lucky to be in the same position. Here’s the bit where I say I wouldn’t change a thing. But I would. I’d kick epilepsy to the kerb and make sure my daughter never had a seizure again. But the rest of it, the rest of the alternative life, my daughter’s incredible energy, happiness and carefree spirit? That I wouldn’t give up so easily. Nor the person it has enabled me to become.  The post What I’d tell my past self appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/what-id-tell-my-past-self/

My ten-year-old, Jenson, adores buses.  A day does not go by without his bus obsession cropping up in some form or other.  He will happily watch buses on YouTube for hours on end.  He has bus-themed reward charts at school and home.  His teachers use bus numbers to teach him mathematics, and ‘creative’ bus advertising to help with his reading. Of a weekend, we can often be found in our local high street, bus spotting, bus riding, hanging out at bus stops and talking to bus drivers.  While his younger brother and dad spend every weekend playing football and riding bikes, he and I spend most weekends on, or around, buses. Last weekend was no different. Jenson and I were hanging at his favourite spot in the high street, deciding whether to keep watching or to take a trip.  A new favourite of Jenson’s, the number 23, pulled up, and the bus driver got off the bus to take a short break. He was one of those people who as a parent, you immediately feel comfortable around, he engaged with Jenson and chatted about buses.  He then invited Jenson onto his empty bus to ‘test the bells’ to which Jenson happily obliged, followed by a sit in the driver’s cab.  Jenson was thrilled, as was I. The date was Sunday 13th November, and that morning, the local community had organised a Remembrance Sunday parade down the high street, incorporating the two-minute silence.  The driver asked me if we had just been taking part, and I answered no. I explained that Jenson finds it difficult to stay silent; he can’t process the instruction, and doesn’t understand the gravity of the occasion.  Therefore I tend to avoid such occasions, for fear of drawing negative attention due to his inappropriate behaviours. The bus driver then really surprised me, with the incredulous look that came over his face, and his words that followed. He exclaimed “What!! Why not?!”.  I was taken aback, and attempted to repeat what I had previous said to justify my reasons.  He persisted: “This is crazy!”. I must explain at this point, that despite his terse and direct words, our new friend was clearly a gentle, caring man.  Although he was challenging me, his intentions were clearly borne out of a belief in equality and fairness, as was demonstrated by what next left his mouth.  “Who cares what the world thinks?  The world needs to learn more about differences.  Who cares if he is not silent, just because they tell you that you should be silent?  The world needs to understand and embrace differences.  The world needs to be more understanding, and they need people like you and Jenson to show them”.  Feeling a little like I was being told off by the headmaster, I was at a bit of a loss as to what to say next.  I sheepishly concurred that I agreed with him, but that I still have trouble being brave enough to put this into practice, due to many examples of negative attention that we have attracted on past occasions in similar types of situations.  At this point, it would have been easy to reflect and conclude that no-one understands a day in the life of a parent like me, unless you walk in those shoes.  However, there was something about my new bus-mate today, that made me stop and think. Dissatisfied with my answers, the bus driver continued to give me a stern talking to; encouraging me to never mind about other people. His tone was kind, but firm, with sentiment and compassion. After about five minutes, his break was over, and the next thing I knew he was ushering us onto the bus to sit down at the seats nearest the front.  He started the engine, shouted “Let’s go for a ride”, and we were off!  Before I had a chance to resist, we were taking a 20 minute round trip to the terminus and back. Unfamiliar with such random acts of kindness, I was taken aback but I soon relaxed into our impromptu journey, with the driver chatting away, and Jenson chatting back, much to the amusement of the other passengers. I took a moment to savour the pleasure and excitement that Jenson was experiencing, and I found myself speaking more loudly and excitedly to Jenson, as we chatted about landmarks that we were passing.  I was deliberately heeding the bus driver’s advice about throwing abandon to other people’s perceptions. Rather than hush him, and keep my voice low, I did the opposite, and it felt great! I noticed that Jenson was responding to my more relaxed demeanour, and my ease was having a very positive effect on his own behaviour. On our return to the high street, we had another lovely chat and I learned our new friend’s name, and he told me a little bit about his family.  We have since met up a few times with Laslo, and taken a trip on the number 23.  Jenson is happy that he has a new friend and I am happy to have experienced a random act of kindness that has definitely lead to a positive change in my own behaviour and outlook. In Laslo’s words, “The world needs to be more understanding” and “Who cares what the world thinks?”  I am now trying to adopt this mantra every day, thank you Laslo! The post A bus driver, a life lesson and a random act of kindness appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/a-bus-driver-a-life-lesson-and-a-random-act-of-kindness/

Most of my blogs are geared toward those of you who are just starting out on your journey with your child/children with special needs. This one is no exception and may be one of the most important, I feel, so far. When I was young and found out my baby had some things wrong, I was devastated. No one knew how things would progress for her. I was trying to live and enjoy my baby, but there were so many things to consider for her life and her future. One of those things, which is one of the most important, never occurred to me….her housing. My daughter and I would have benefitted greatly if someone would have been in our life then to tell me what steps to take for future housing. You see, at age 23 most of us are not thinking about 20-30 years in the future. Especially when we are scared and not knowing how to live in the current moment. I told my daughter I was having some difficulty coming up with a blog for this month, and she told me to write about “our house”. She is speaking about our future home that is as real to her as it is here now. She and I both believe in our future home; we just must wait. As Emma got older, I started to attend many educational seminars to help me feel more confident in making good decisions for her. I am a single mother and did not have anyone to bounce ideas off. I believe these things are even difficult for married couples who have each other to talk things through. These seminars are what gave me what I feel is the best plan for my daughter’s future. These are true stories of other parents who helped me tremendously. The first parents I heard from decided to move out of the family home that their son had always lived in, and they moved a roommate in with him. Then there are other families who bought homes to provide safe housing for their disabled children. They also put roommates in the home. I know another single lady who started a home of six men, one of whom is her brother. So many ideas were available to us other than a group home! A group home in which I would have no say or control over who comes in or out, who lives or works there. That does not feel safe to me. Right before COVID, I received a decent mortgage approval that would have provided us with a good home. Enough to give her her own place with at least 1 -2 roommates. Emma loves this idea. This is very much her dream as well as mine. Unfortunately, as we all know, the housing market has not been doing well for the last couple of years, which has put our home buying on hold. I have faith, and I do not want anything God does not want for us, but I feel this is a calling in my heart. I believe this is still yet to come. I want to make sure Emma is in a nice home, with nice roommates, and with proper care while I am still young enough to make sure of all of this. I would like to wean away and give her her own life. There is obviously much more to this process and many things to plan for and consider . This blog is to help all of you awaken to what plans you need to put in place for your child. Especially saving money so you know your child/children are well taken care of. Starting these things while your child/children are at a young age can, and will, make a huge difference over the years. If you follow a strict savings plan for these specific needs, I can promise the money will add up very fast. Starting at your child’s young age will make a major difference in their life, as well as take a weight off you. That weight can be very heavy at times.   It is our duty as parents and caregivers of other humans that cannot take care of themselves to make sure they are taken care of. For my daughter and me, I put God first because I know He will take care of everything for us. He always has and He always will. I am trusting in God’s timing and very excited to see what the future holds for us. I hope this helps you so you can plan a future that provides peace in your hearts. The post Across The Years: Housing for your Child with Special Needs appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/across-the-years-housing-for-your-child-with-special-needs/

In the early years of my special needs parenting journey I felt like my voice was silenced and that knowing my child best took a backseat to professionals who proclaimed to know more than I did. It took me many years to realize my voice for my child was much stronger, louder and the one who was the expert in his life and his needs.  I had therapists tell me I needed to let my son cry it out in therapy even if he protested in pain or discomfort; physicians labeling failure to thrive even though he ate a consistent diet with more calories than an adult in one day and simply had so much neurological damage that he metabolizes differently; an orthotist instructing me to have my son “tough it out” if he no longer wanted to be in a durable medical suit that was squeezing him too tight; and even a self-proclaimed car seat specialist telling me I couldn’t turn my child forward facing in a car seat at 11 months old in order to prevent him from throwing up and aspirating due to severe sensory processing disorder by facing backwards.  And then I realized that when I finally found my parental backbone (which inevitably happens for all special needs parents at some point), you make the “experts” fuming mad. It’s that special needs parent epiphany of I know how to protect my special needs child and care for him better than any text book or provider ever learned in school.  How dare you go against expert advice and not follow the “science.” They bark back. I was asked to be a last minute guest speaker for the Automotive Safety Program put on by Riley Hospital for Children, Indiana University School of Medicine.  My role was to discuss car seat models, their safety features, and compatibility for special needs children with my knowledge and experience as a former durable medical equipment affiliate and brand influencer. The audience was only physicians, nurses and medical residents. And jaws just hit the floor when I went against traditional car seat standards. Followed by fuming mad glances. It was too be expected when you are presenting unconventional content and challenging the medical field. But, I held my ground.  Offering them real world examples of how modified our world must be with a child who has special needs.  And that it will never be a one size fits all, or that we all can follow the same health guidelines. These are critical discussions to have because not all special needs children are not cookie-cutter scenarios -- even with adaptive equipment needs.  What is safe for one child, may be the cause of injury or death for another. The topic of knowing your child best isn’t really discussed much, especially if that means going against experts, advice and standards.  Special needs children aren’t a one size fits all. Each one that I have been blessed to know are so individually unique even if they share the same diagnosis or disability.  One might need to recline in a car in order to keep their oxygen saturation above 90. One might need to sit upright so they don’t choke on secretions, one might need to lay completely flat after double hip and spine surgery.  One might need to be forward facing before the recommended age so that they can handle their sensory processing disorder that causes them to vomit and potentially aspirate under duress. The biggest home run that I hit that day was getting that audience to just think about what I was saying. They didn’t have to necessarily agree, but I hope I planted the seed that parents ultimately know their own child best and sometimes that will mean going against what traditional standards or advice is.  My hope is with time as more of us find our voices on the journey there will be less fuming faces and more proud smiles supporting us for a job well done.  The post Fuming Mad: Because Your Special Needs Child Comes First appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/fuming-mad-because-your-special-needs-child-comes-first/

Uuugh. It hasn’t happened often in recent years (the wheelchair/oxygen cylinder/suction machine kind of give it away) however it was a phrase we heard a lot when he was little. How exactly are you supposed to look with life-threatening epilepsy might I ask? Even now photos can be really deceptive. The photo on this post is an old one, but a favourite – he was so, so proud of himself for managing to sit unsupported next to his Dad. To look at him here, he looks like any other happy healthy kid.  In truth, this, like all photos, is a snapshot in time – a moment when he found his balance perfectly. It lasted a matter of seconds, you can’t see his Dad’s hand carefully placed behind him ready to catch him as he lost that balance, seizures rapidly took over and he slept much of the afternoon away, protected by our friend’s wonderful dog (who along with us didn’t leave his side). Then there’s the other extreme . Those who see my boy and fail to see the clever, cheeky boy who can communicate, is a demon at boardgames, loves swimming and LEGO... instead focusing on the issues. They see a disabled child, and miss all that he is and is capable of. It is entirely their loss as he won’t give them the time of day... he has a slightly evil habit of kicking people who talk over him in the shins then looking as innocent as possible. Can’t say I blame him. Assumptions about his abilities are a plague my son faces almost daily but he will never face them from those who love him The only thing that will limit him is his imagination. His most loved Aunty nicknamed him Spaceman (he loves stories about space, rockets and flying amongst the stars), his teachers continue to push him to achieve things he currently finds difficult and we will continue to cheer him on. One of the greatest disservices anyone can do to another person is to write them off before they’ve even had the chance to try, able bodied or otherwise. Children with disabilities have enormous potential just like all others, they just need someone who believes in them and who will give them the confidence to spread their wings and learn to fly. The post ‘But he looks so... normal...’ and other unhelpful comments appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/but-he-looks-so-normal-and-other-unhelpful-comments/

We’ve had multiple hospital admissions with our eight year old daughter, who was diagnosed with epilepsy at 18 months. She has a complex epilepsy that is very hard to treat. Some stays have been terrifying, some funny (I’ll explain) and some have now become almost run of the mill. Our first stay was during her diagnosis. As our little room filled with people, we were terrified. She was confirmed to be having seizures. Tests were ordered for a wide range of conditions (I still don’t know what they all were) but we were soon facing the reality that life was unlikely to follow the path we imagined. Those stays would be the first of many for us We arrived by ambulance for some subsequent ones, with prolonged seizures. Some stays were for investigations to see if she was a candidate for surgery, some were for the surgery itself (she has a Vagus Nerve Stimulator). Other more recent ones have been for non-convulsive status epilepticus. Recently we were ambulanced to hospital with a prolonged seizure. By the time we got on to the high dependency unit, she’d had a quick sleep, leapt out of bed and was signing ‘home’. The nurse told me it was the first time she’d ever admitted someone on to the ward and then discharged them, all while covering someone else’s break (that was the funny one). So, some tips for hospital stays. This is what works for me: Say thank you and be nice to people (it’s ok to get inwardly irritated by professionals though, they are humans, and I have done my fair share of private eye rolling when things have been said less than sensitively). Get your support network in place, if you are lucky enough to have friends and / or family offering help, say yes. Tell them what you need (I normally go for food). Don’t be afraid to ask the nurses questions; is there a playroom? is there somewhere I can make tea? Often the nurses are too busy to brief you in when you arrive. Take in home comforts – your fave tea, chocolate, blanket, whatever makes you feel better. Headphones are good for podcasts if your child is sleeping a lot. Take comfy clothes – I go for leggings or joggers and often bring slippers to pad around in. Although our stays have been frightening at times, I have, for much of them, felt comforted. I will end by sharing one exceptional act of kindness that I experienced when we were in last week for four nights. A nurse overheard me on the phone to my husband asking him to send in some 85% chocolate. Shortly after the call she appeared with two mini bars, 75% and 85% saying “I couldn’t catch if you wanted 75% or 85%”, offering them both to me. I could have cried. That chocolate tasted so good. The post Hospital stays appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/hospital-stays/

I found one common theme in the beautiful 30-year journey I have had so far with my daughter, and that is that all the best advice I ever received, was from other parents who have children with special needs. There are so many others who may try to help, and I believe their intent is well-meaning; however, without walking this path it is impossible for others to truly know the full scope of what we live. Not just the trials, battles, and wounds, but most importantly the triumphs, joys, amazing relationships, and unconditional love. It is my hope that this blog will help some of you new parents and caregivers just starting out on this journey. At the beginning of my journey, I would tend to lean on and live by the advice of doctors, teachers, friends, and relatives. While their advice was sometimes good, and helpful, I always felt something about it just didn’t feel complete. Once my daughter started school, dance class, and Special Olympics, I met so many parents! There were 5 of us that met weekly for coffee while our children were in dance class. At Special Olympics, there was much time for conversation while waiting and watching the games. There is a different kind of connection that we have. It’s a natural understanding and compassion. There are a lot of areas for obtaining advice, and I suggest using all of them, I know I did. At the same time, I would seek out those who really knew what it was like to be in my shoes. The best school teachers my daughter had were those who had their own children with special needs. All her teachers were great, I am grateful for all of them; however, there was just something different, and more at ease, with the teachers who were on the same journey. There was a lot of advice that I received from other parents that I would have never known about if not for them. This blog is not to talk about specific advice, because there is so much information and help we all need, but to let others know that other parents can be, and most often are, our best guides. We can all use help to take care of our children with special needs. Some of us parents are single, and others have challenges that require help. I strongly suggest you get to know the other parents along this journey. Some of them will stay and some will go, but all of them just might touch your heart and take some weight off your shoulders. Some of the other parents might become your best friends and confidants. I understand what “It takes a tribe” means. Life with our special needs children takes a tribe. God bless all of you wonderful parents and caregivers. I know this journey can be exhausting, but it can also be beautiful and heartwarming. The more help and guidance you have the more you can enjoy the heartwarming events. Some of the simplest advice can make a major difference in our children’s lives. This photo is of my daughter with her weighted blanket. Another parent recommended and made this blanket. It made a big difference in her life when her moods elevated, or she just felt anxious. The post The Best Advice While Raising a Child with Special Needs appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-best-advice-while-raising-a-child-with-special-needs/

It’s a phrase that parents of disabled children hear frequently, along with “I think you’re amazing”, “What a wonderful family you are”, and words to that effect. Despite being a regular recipient of such compliments, I still find I am at a loss to know how to react or what to say back. I politely respond, “Thank you, but no I’m really not!”, when really I want to say “You’d do exactly the same if you were me”.  I find myself wanting to grill them on what they think I am doing that warrants such kudos. Fundamentally, what am I doing that is so amazing, other than bringing up a child that I love? I am doing everything in my ability to ensure he is safe, well, and cared for, which is the same as what every other parent I know is doing too, right? I guess the difference is that I am having to put a whole heap of extra work into this journey, and the path is fraught with obstacles Perhaps they see the exhaustion on my face, or witness me repeatedly declining invitations to social occasions.  It is nice to hear compliments from people that recognise and observe the struggles that I go through, but it frustrates and saddens me that maybe they are drawn to the obstacles I face and not the joy of the journey. And so here I am asking myself why I find it so difficult and awkward to be complimented on my parenting. I think this is partly down to the unrelenting, perpetual guilt that I experience, that makes me feel undeserving of any parenting plaudits. For me, the focus remains on all the things that I haven’t done as a primary carer; all the things that I should be doing more of; all the things that I feel I have failed at. It’s the time I spend alone with my other child because he needs me to show him I have the same amount of love for him too.  It’s the therapies or extra care that he misses out on because I’ve run out of time or energy.  It’s leaving him on his iPad for longer than I should so that I can get tasks and chores done. It’s a daily battle with feelings of ‘I-could-do-better-for-him’, and ‘what-if-I’d-done-this-differently’. When someone praises me on how magnificent I am for what I am doing for my son, this also seems to unhelpfully focus my mind on the differences he has and the reality of the situation. It serves as a reminder that I have a seriously different life to other people, and it reminds me of the gravity of my situation and the severity of my child’s condition.  I previously felt purposeful in my professional life, but I relinquished my career not long after my son was born.  I now need to feel I make a difference and serve a purpose elsewhere, and so by focusing on making a change and having a positive impact gives me this life narrative.  For me, I have ended up in the spotlight, advocating for families like mine, representing parents who cannot represent themselves, and crafting new services to counter the existing under-provision.  This is not for everyone, and I do not seek praise for this; it is a personal and somewhat selfish act that helps me unravel my own demons.  I am truly grateful for the accolades that are bestowed upon me, but please know, I am just another parent doing another difficult job, and yes, you would do exactly the same, and like me, you would do it through unconditional devotion and love. The post When people say “I don’t know how you do it” appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/when-people-say-i-dont-know-how-you-do-it/

Don’t you wish sometimes there was a Special Needs Library? And I’m not talking about one that just is filled with books, but a library of those going through what you are in a specific moment of time. Both a resource and support section for exactly what you needed in the moment. There are so many faucets to special needs parenting. There’s a grief section; while they are alive and when a child has passed. There’s a joy of “inchstones” and small achievements that would be trivial to the outside world. There’s a ‘I am flat out confused over durable medical equipment’ section. A legal section for I have to fight a slew of denials. A section on learning how to be alone and without a 4am friend to call when your child just had their fifth seizure of the night and you are scared. A place within the library with round tables, and chairs so welcoming and comforting that they felt like an instant hug. .  A place where you aren’t just pulling books off a shelf but sitting together in genuine support and comradeship. Maybe even sitting just in silence because the words are too hard to utter, but with an unspeakable understanding of one another. Where at the same time you don’t have to be quiet and whisper and are allowed to let your soul echo the loudest battle cry and heartbreak. When cursing and screaming wasn’t taboo and expressing your pain didn’t have to be suppressed. When no judgment was passed for any of the emotional expressions you displayed. A library that served free endless coffee because you are so tired that all the words in any book are blurred from the lack of sleep. Perhaps even a snack in the name of the ever preached but elusive “self-care.” A library that says that’s my section and those are my people who are immersed in this aspect of special needs parenting with me. Where you could bounce ideas off of each other completely without reservation of being attacked or wounded for your thoughts and feelings. Where there’s no overdue book fees or fines for needing to cling to a resource for as long as you needed. Check out cards a thing of the past where we all operated on the when I get around to it honor system. Where no one would fault you if you were late, or had a prior commitment that was more pressing. The librarians would be seasoned special needs parents now in their golden years full of understanding, compassion, kindness and endless empathy for young parents who just joined the journey. We could bathe in their knowledge, ask them which directions to go, and what to avoid. Our safe place to research and ask questions of each other far away from the prying eyes of progress and providers. Knowing that we’d put our heads together even if it took hours to find a solution. The place where it was just understood that mom’s and dad’s know their children best. The library would be open 24 hours a day, so if you had a midnight crisis you could find the section you needed.  A librarian would meet you at the door to assure you could easily find your way. You would be greeted with tenderness and the librarian would offer to fetch you whatever you needed. What section of the library would you head to first?  Where are you on the journey? What book do you most need to find? The post Dreaming of a Special Needs Library appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/dreaming-of-a-special-needs-library/

I’m going to be very honest in this post, kindly take this as both warning and disclaimer. I intend to admit to ignoring a lot of the things that parenting guides tell us we should, nay, must do. And for that matter, doing much of what is prohibited. As a new mum with a medically complex baby I was terrified that I wasn’t up to the task ahead. Remember the Red Book given to new parents? The one that charts your babies progress through their vital developmental stages? Yeah. We chucked ours into a drawer and ignored it (best health visitor advice ever given that was – as soon as the Dude’s diagnosis came in, she told me to put it where I couldn’t see it). We already knew he was fighting for his life, developmental stages were not the priority. I found it again during the week before Christmas...a decade after it was first consigned to that drawer it still has the power to hurt, so back in it went (under a pile of stuff that won’t be needed for YEARS). Bedtime is another one of those subjects upon which parenting experts are agreed – early bedtime, routine are vital. Erm, not in this household they ain’t. Seizures, multiple medications, regular bedding/clothes changes (especially in the early years before gastro/reflux issues were better managed) meant that bedtime was/is disrupted. To put it politely. Now, we go with what our boy needs – he has his own bedtime routine,  it may mean that some nights he isn’t in bed until 10pm but others he’s fast asleep by 7pm. We learnt long ago not to sweat it, if his seizure activity is high he needs more sleep. Other days, he doesn’t. And on the subject of sleep... we have co-slept, stayed awake all night while he slept on a beanbag, slept in 3hr shifts while the other was on seizure-watch, slept on sofa beds, hospital chairs... for 3hrs we all slept in a dining room together as it was safer than us being upstairs and our boy being downstairs. I have done the unthinkable and (brace yourselves) held my child while he fell asleep in my arms, when he was a baby I nursed him to sleep when he was fractious, when the seizures have distressed him to the point that he is inconsolable we have run a warm bath in the middle of the night and just let him relax as the warm water works its magic. I wish that when my boy was first diagnosed I knew what I know now. That it’s OK to do things your way. That medical kiddos have enough going on to care about following what the ‘experts’ say. Their parents do too. And it’s fine. At 11, the Dude is absolutely epic. And after a decade plus of this, I think I can safely say that we got this. The post Confessions of a medical mom appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/confessions-of-a-medical-mom/

From the day she started she said she hated it. I thought it was first day nerves. It was the big change. She’d get used to it soon and settle.  A few months went by and she started to change. Mood swings, behaviour changes, tearfulness. I put it down to tiredness, hormones, missing her old friends.  Then it started: Complaining of a sore tummy, headaches, refusing to get dressed, feeling sick. I spurred her on thinking I was doing the right thing. She’d come home telling me things that didn’t seem right. I’d email and they’d promise to sort it. Then something else would happen and I’d email again. And again. And again. Emails became meetings. Still she was so unhappy. By now she was refusing to even go, making herself ill, crying all weekend. Maybe it wasn’t the right school for her? The problem with having a child with additional needs though is that it’s not as simple as just choosing another school. I hadn’t even chosen her school to begin with! So much was out of my control and all other placements for those with additional needs were already taken with a long waiting list too.  We tried to make it work, probably far longer than I should have, but in the end it was obvious that school wasn’t the right place for my autistic child.  It only took a matter of weeks to get formal permission to remove her. Her placement was in demand and for another child it may well be exactly the right place for them. For my child though her mental health had to come first.  School trauma is very real and much more common than many realise, especially for autistic young people like my daughter. Her story is far from unique because the school system is often so inflexible and limited. Children are lumped together often based solely on diagnosis or location and places often decided by people who have never even met the child. For some children this works out well but for many others it continues to be a struggle and their mental health suffers as a result. School isn’t always the right setting for a child to learn. We need better options to accommodate wide needs and to suit each individual child. It’s not about ‘pandering to a spoiled child’ as some seem to think, but responding to your child’s communication and truly listening to their needs.  There was a time when school was very much the right setting for my child but things change and the transition to secondary was more than she could cope with.  It’s not been easy to go against the grain and realise that school isn’t the right place for my child but it’s definitely been the best decision I have made. My child is very much still learning…it just happens in a different place now because that is what she needs.  The one and only school photo she had from her time there should have told me that months ago. If only I had listened earlier.  The post When school isn’t right for your child appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/when-school-isnt-right-for-your-child/

Lots of people told me it would get easier as my children got older. They wouldn’t be so needy or demanding and they would become increasingly independent.  I am not sure if they grasped the ‘lifelong disability’ part of autism but having two autistic teenagers definitely hasn’t got any easier. In fact, I am probably caring for them more now than when they were younger! Raising autistic teenagers is completely different to raising neurotypical ones. Independence isn’t guaranteed in any way and navigating hormones they don’t understand and communication difficulties with even more peers and professionals involved adds stress that is completely different to that of raising younger children. High school is such a different experience with my children being one of hundreds each teacher sees daily. Each day my children have to cope with so many transitions, demands, expectations, social pressure and time pressures with far less support to help them through. Then there’s the pressure to conform, to fit in, to grow up. They may, like my daughter, mask all day then break down or meltdown at home as the pressure gets released. They may feel they have to hide what they genuinely enjoy for fear of being mocked by others. The social skills that others take for granted might be extremely confusing and misleading making things awkward or upsetting on a daily basis. The realisation they are different and the struggle to accept that is so difficult to manage especially during the years of puberty and high hormones. Then there’s their changing bodies, the growth spurts and all that comes with puberty: hair, breasts, moustaches and periods. Explaining all this to children who hate change is a huge challenge and not for the faint hearted! Preparing them when you can’t say exactly when something will happen sends anxiety sky rocketing and causes so much frustration.  It’s the years when social interaction becomes much more nuanced and complex too causing huge anxiety to my autistic teens who still think in black and white and take everything literally. ‘Are they laughing with me or at me?’ becomes a daily worry. ‘Are they really my friend or are they just using me?’ becomes a nightly question I struggle to help them answer. As my children have aged, the difference between them and their peers has widened greatly. The autism is more exposed, open, and visible and they are more vulnerable than ever. The balance between trying to protect them whilst letting them experience the world to learn and grow gets trickier and harder by the day.  I want them to be proud to be autistic, to embrace exactly who they are without fear but am I setting them up to be bullied and excluded by society or should I watch them struggle to mask and blend in so that they make it through high school without being a target?  That was my struggle until my daughter had a complete breakdown and is now home schooled and my non speaking son was placed in the most complex class in his special school.  Now they are free to be exactly who they are but they both still need me now more than ever.  To all those parents raising autistic teens: I get it. You are not alone. Take each day at a time and remember this too shall pass!  The post Autism in the teenage years appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/autism-in-the-teenage-years/

Every day as soon as the taxi drops him home, I eagerly unzip his bag to read his diary. I wish I could ask him about his day but that isn’t possible. Well, it is possible, but he can’t answer. At 14 he still can’t speak and that home school diary is my only lifeline of knowledge of what his day has been like. That diary is everything. It lets me know if he’s drank anything all day and what he’s eaten. It informs me of any care needs he had and how these were met. It helps me know if he’s had any seizures and if so when and for how long. It notifies me on what events are happening as he can’t tell me. It fills in the pieces of his day and gives me a connection to the staff working with him.  It gives me knowledge of how he’s progressing and how his mood has been. Every word in that diary matters but there’s something that matters even more: Photos from school. A click on an iPad or a button pressed on a camera and a small paper printout sent home means the world to me. It gives me more insight into my son’s world than anything the staff could write. It lets me see that my son is genuinely happy and relaxed. It gives me something to show my son to talk to him about his day. It highlights my son’s achievements and makes me feel he’s cared for. More than all of that though those little photos give me so much peace of mind that my vulnerable son is ok when he’s out of my care all day at school.  It’s hard to trust people when you have a child who can’t communicate and who has very high needs. Now he’s at high school, knowing all the different staff is much more difficult and complicated too. He can’t even tell me if he has friends or share stories of his classmates. There were times during Covid when I didn’t even know how many were in his class or any of their names. Now I treasure every single photo from school so much. I check the schools Twitter account to see if there’s any new ones of my child at least twice a day and treat that home school diary like my life depends on it.  It might just take one moment of an adult’s time to snap a quick photo but for me that photo means everything.  He can’t tell me anything about his day but a photo can.  A small piece of paper but priceless to parents like me.  The post Photos from school. appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/photos-from-school/

When I saw this tree, I could not help but remember God’s Word.  “He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” Jeremiah 17:8 Being a parent can have its challenges for sure. However, being a parent or caregiver for a child with a disability takes challenges to a different level. You were given this child or children…you, and no one else. You are whom they need and whom they depend on. Not only are you brave, but you also have the soul to truly love them even on their hard days. You are motivated to give your child everything they need. It takes a heart of courage to wake up every morning and do it all over again, yet you do it, every single day! I know you are exhausted most days, but somehow you pull through and take care of the needs of another human being, even before your own needs. The best part is that you find such a deep joy in this child that God has placed in your care. God trusted you enough with one, or more, of his special children, and I know you make Him proud. I also know, some days it doesn’t feel like anyone might be proud of us. We have some downright ugly days that we feel like such a failure. God does not see us that way. Remember to let go of past so-called mistakes. I do not believe there are true mistakes if we learn from them. If we are feeling depressed that means we most likely are living in the past. If we are feeling stressed and anxious that means we are most likely living in the future. Live in peace in the now and enjoy your days with these special children. Life is fleeting, too fleeting to live with any regrets. These children with special needs look to you, to your smile, to your gentle touch, and your ability to maintain your patience, even during the most difficult of days. You make their life OK. You are the bright spot in their day, their comfort, and their strength. You are theirs and they are yours. I write this blog because I know all too well how challenging life is for you. I too have a child with special needs. I know what most of you go through, as all our children have different levels of disability. At the end of the day, we all have commonalities on this journey. I know my daughter delights when I smile at her, when I hold her hand, and tell her how awesome she is. The joy she has brought into my life could never be replaced. To be fair, I must admit there have been many days I have wanted to give up, but this is not something we can just give up on. I know that is just my exhausted brain thinking and truly not where my heart is. My heart loves this child with all my being. Don’t be too hard on yourself when there are days you want to give up, or you don’t feel like you can “do this” anymore. Say only kind, encouraging words to yourself. My goal here is to encourage all of you. . Especially during this time of year. I know there is a lot more stress in my home during the holiday season. My daughter started getting excited about Christmas around the time the stores started putting up Christmas things, which as we all know is before Thanksgiving, and some start around Halloween. My daughter’s excitement turns into a serious case of stress and anxiety. One would think being excited isn’t a big deal. She is looking forward to a fun day; however, her excitement can turn into a meltdown at any moment. I know there are many of you that can relate to what I am saying. We all have our own ways of helping our children through this exciting stress. For me, I find redirecting as soon as I see any hint of a mood. We put all our fun events on the calendar. When she is overly excited, looking at the calendar helps her cope. Don’t forget to find some time for yourself during the holiday season. . I know this can be challenging, especially for some of you that do not have someone to help you. For those of you that do not have help of any kind, I pray that some comes your way. I believe God can provide whatever we need. I like to thank God in advance for providing whatever need it is I am asking Him for. Try that for yourself. Thank God for providing the right people, trustworthy people that will love your child and put their care and needs above all else. Believe in yourself, and on the days you are questioning yourself, remember that YOU HAVE GOT THIS, MY FRIEND!!! Be strong, like a tree planted by the water. Merry Christmas and Happy New Year from Emma and me! The post We Were Given These Children: A Letter of Encouragement appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/we-were-given-these-children-a-letter-of-encouragement/

How is Christmas just around the corner? I’m sure it was only a few weeks ago that we were struggling to keep the Dude cool enough with soaring temperatures, yet suddenly there are letters coming home about school trips, Christmas raffles/fairs, Santa… and now we have the opposite issue. Keeping him WARM! We resisted putting the heating on right up to the final week of November, mild weather helped, as did warm clothes. Then the first of the Autumn/Winter chest infections hit and it was clear that we couldn’t risk leaving the heating off any longer… it’s not the cold as such that’s the problem but the damp in the air that gives him (and me) issues. I’ll be honest, he scared us a bit with the speed he went downhill but antibiotics were started quickly enough to stave off the worst and we managed to keep him home, albeit with a ‘home HDU’ in operation. All medical parents will recognise the set up; SATs monitor, suction machine and oxygen cylinder set up, tray of syringes with various medications, paracetamol and thermometer at the ready. Its hard work, exhausting and worrying having any child poorly . Add in regular physical interventions such as chest physiotherapy, suction to keep airways clear, seizure monitoring/management and the constant concern over whether they are reaching the point where we need to move them to hospital and you’re got a potent mix for anxiety, sleepless nights and exhaustion. As he so often does, the little monkey bounced back almost as rapidly as he’d tanked and within days he was back to his usual self. Less than two weeks later, and he’s home from school – temperature, coughing, rattly chest. The phrase ‘here we go again’ flies to mind, as my poor little boy passes out on the sofa, his beloved and ever faithful Merlin never far from his side. Excuse me while I hunt out the Groundhog that must be inhabiting my home somewhere (because Merlin certainly isn’t looking for it). The post Bugs and dropping temperatures appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/bugs-and-dropping-temperatures/

One of the cruellest aspects of the Dude’s epilepsy is how it has damaged his vision. As a baby with uncontrollable epileptic activity going on constantly in his brain, he was effectively blind. The first glimmer of optimism came from a wonderful human being who evaluated him for developmental therapy. He was the first to explain to us what was really happening in our son’s brain in terms of development v’s seizure activity, he was the first to tell us not to give up hope and he was the first to say the term ‘cortical visual impairment’. CVI (cerebral visual impairment is the more accurate terminology) is what happens when seizure activity prevents the brain from developing the pathways needed for vision to correctly develop despite the optic nerve and eyes themselves being perfectly formed. In our boy's case, the seizures were so extreme that his brain just couldn’t fathom what his eyes were telling it. For the first time since our boy was diagnosed we were told NOT to just ‘watch and wait’ but to start working with him immediately to develop those pathways and help his brain overcome the negative impact of all that pathological electrical activity. A decade on from that first meeting, an enormous amount of effort and hard work later, and our boy has functional vision. He still have severe visual impairment however he DOES have useful vision. Working with his teacher for the visually impaired we have learnt a huge amount about how to help guide his visual development; we’ve learnt that his peripheral vision is far better than his central vision, but we now have tools to help him continue to develop his visual skills. And there is no better time of year for him to really show off how far he’s come, than at Christmas. I will never, ever get tired of seeing how my boys face lights up (sorry) with excitement when he sees houses start to light up with decorations or how much joy he gets from attending events such as the Lights at Trentham Gardens – a favourite family haunt of ours any day, but seeing it lit up after dark with festive music playing at just the right level to not be overbearing takes it to another level for him. The presence of those multi-coloured light up toys at this time of year make visual therapies that much more fun too.T omorrow we will be putting our decorations up, somehow I suspect our little superstar will be instructing us on where things need to go! Merry Christmas everybody, here’s to a peaceful, safe 2023. The post CVI, Hope, and Christmas appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/cvi-hope-and-christmas/

“Your word is a lamp to my feet and a light for my path” Psalm 119:105 Is there a person that relies on you for all their needs, most of them, or even just some of them? Either way, if you are a caregiver, you will have answered yes to this. The holidays are busy enough, but when someone is a caregiver, life seems very overwhelming. One might become exhausted early into December and most especially before Christmas. How can we enjoy the holidays and still be the caregiver our person needs us to be? I know this is easier said than done for most of us, but you must take time for yourself. If you don’t it will only lead to burnout and exhaustion. This can lead to illness. We as humans need to rest and recuperate. Keep an organized calendar so you can plan accordingly and look ahead at what you need to accomplish that day. Most importantly, try not to think too much about the days ahead. One day at a time and one step at a time. Use your time wisely and listen to what your gut and your body are telling you. If you know you need a nap, and you have the opportunity to do so, take one. Talk to others, and tell people close to you that you really need help. Maybe give several people some things that you could use help with. This way you are not putting too much on one person. If you don’t tell anyone you need help, there is no way for them to know. I know it would be nice if others just knew our needs and came to our rescue. I don’t like to ask for help, but I do so I can keep my head above the weeds. It takes a tribe. I love the way tribal Indians lived. A child is not raised up only by their parents. For example: From the article “Family Life in the Culture of the Plains Indians” by Sally Painter “The elders of the family played a vital role. The women helped in child rearing and domestic chores. The elder men may have served on the chiefs' council. They served their extended family as teachers, mentors, spiritual advisors, and confidants. The Plains Indian elders were highly respected by their family. The family took loving care of their elder members, and honored the infirm to ensure an honorable, dignified death.” ( Family Life in the Culture of the Plains Indians | LoveToKnow ) In my opinion, this is what family is all about. I find it extremely sad that family care, for some, is nonexistent. I often wonder, why are we here if we are not taking care of each other and being kind to each other with love and compassion? I believe this is one of the core reasons we are on Earth. There are many other ways to take it slow and take care of ourselves during the holidays, and that should continue into the year. We all know these things, but it can’t hurt to say them anyway. We can all use a reminder of what our bodies need, myself included: exercise (at least take a walk), comfort from a pet, plenty of sleep, eat as well as you can. I know, nearly impossible during the holidays. It can be really difficult to not have dessert at every gathering. I mean, we have to try our friends’ desserts! Take small portions so you can enjoy without overdoing it. These are all things we know. My hope is that this blog will give you a little encouragement and strength. Remember to have fun and take time out to be silly. Caregiving is a lot for one person, and no one can ever know what it’s like until they have walked the path of a caregiver. The post The Path of a Caregiver: Surviving the Holidays appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-path-of-a-caregiver-surviving-the-holidays/

Like many families of disabled children, we view approaching holidays with a sense of dread. That may sound dramatic, but it is the reality for families for whom school is not just about education, but is about essential respite. The needs of my child are so great that she requires at least one to one care at all times, most of the time we cannot be more than a metre from her. Other times, when her seizures are very bad, we have to physically hold her on a harness as she walks around to prevent injury. Being tethered to your child like this gives a whole new meaning to attachment parenting. Christmas for us evokes all sorts of emotions, of course there is some excitement, but it comes with a sense of heavy apprehension. Will we get a seizure free day? Will we be in hospital? What would that mean for our other child? The weight of it is tiring. Like birthdays, Christmas can also be tinged with sadness, it can be a reminder of the things our little girl cannot do or understand, for example Father Christmas, or the anticipation of presents. It can be exhausting to try to come up with present ideas when her development is not linear, there are only so many sensory toys one house can accommodate... It’s important for families like ours to know they are not alone and there are some brilliant groups on Facebook that connect families and provide a supportive space for discussion. The charity Contact runs one of these. Over the years I have learnt to try to let go of expectation or pressure when it comes to big events. It’s a bit of trite line, but it really is just one day. In my experience of being a parent carer there is much joy to be found all year round in the good times. I find those good moments, hours, days are turbocharged with happiness, perhaps of an intensity that typical families may not get to experience. So, while it will always be a special occasion, Christmas for us will never be laden with the expectation that it will be a highlight of the year, that’s just as likely to occur on another day, when my little girl says a new word or has a really happy day. It’s in these times that real joy and celebration lies for us.   The post Christmas Is Coming… appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/christmas-is-coming/

Being a parent is hard. Really really hard. It is an absolute privilege but let's be honest here; it’s hard. I have no experience of raising a neurotypical or able-bodied child. My experience of parenthood shares some parallels, but also it is vastly different. Many of the challenges parents of neurotypical children face will eventually be outgrown (hopefully). For us it isn’t just “the terrible twos” or “establishing a good sleep routine”. There’s no calling a babysitter when we need a break, it isn’t that simple. Now I am not for one moment underestimating the challenges that all parents face; my point here is to highlight that a lot of the things you struggle with regarding babies or toddlers, will continue into childhood, teenagehood (if that's a word), and indeed, adulthood. As the child gets bigger they can become stronger, louder, more dangerous to themselves and those around them. Thankfully for us, Amy’s frustration/crying spells are significantly better than they were a few years ago, however today I am still reeling both emotionally and physically from last night’s bed time. Amy is 8 now. She has severe quadriplegic cerebral palsy. Everyday she battles against the horrible side effects of several medications, manages extra pain to those around her, and has to make herself heard and understood without being mobile or able to speak. I often wonder the level of isolation and frustration she may feel. Even resentment. I am a very sensitive soul and deeply protective of Amy. I know it’s not realistic, but I want every moment of her life to be absolutely amazing, joyous and full of love. I have developed so much empathy, compassion and most importantly patience, for her “meltdowns”. (I am not sure if meltdown is the word now. Is it a crisis? Either way, a period of intense distress.) Last night all of that went out of the window. As with most children, they know how to push their parents’ buttons. I know I could be a little horror as a child and look back on my actions (especially as a teenager) with embarrassment and remorse. However when Amy has one of these episodes, she isn’t aware that she is pushing buttons. In that moment she is completely at the mercy of whatever her brain is putting her through. As I was saying goodnight I could see an absolute rage wash over her. She was consumed by it. She was hitting out, kicking, screaming, trying to rip out her hair.  All you can do at that moment is try to keep everyone safe and keep breathing. Remind yourself that this will pass. Remind yourself that this isn’t about you, it’s about her. She’s struggling right now and needs your support. Eventually she was out of breath, breathing fast, retching, and had a very high heart rate. My instincts told me to check her blood ketones and glucose as previously she has responded to ketoacidosis in a similar way, and if it was that - then it’s a medical emergency. As I tried to calm her and check her bloods she swiped the finger pricker out of my hand and the needle gashed my hand. Blood was going everywhere. I scrambled for a tissue but didn’t want to risk her falling from her bed.  My second attempt - she kicked the lancet out of my hand meaning a loose needle was in her bed. As I attempted to locate the missing needle she kicked me in the face causing a fat lip. When Amy’s moods are strong her movement disorder switches it up a gear and one unfocused moment will mean a nose bleed. By this point I was feeling fearful, upset, and quite frankly annoyed. I shouted at her to sleep. The anger intensified. I suppressed tears and told myself to calm down. In the end I needed to administer chloral hydrate to sedate her. It’s a decision I don’t take lightly and I only use it in extreme situations. For days after I feel upset and guilty about it and need constant reassurance that I had no choice and that to leave her that distressed is unfair. This morning she woke up, perfectly happy, as if nothing had ever happened. The relief is palpable. My beautiful happy girl is back. Morning meds kick in and she goes sleepy. I hope that smiles will return later.  I am still carrying the stress today. I can feel it all over my body. I wish I had been calmer and quieter. I never ever shout at her. It doesn’t help a stressful situation. But I know that often this is what happens to a parent when they are pushed. I feel terrible now. Proper Mum guilt. I worry if this will happen forever randomly. It only happens every now and then but when it does it knocks me for six. I had some spare time so I managed to squash in a dog walk and a gym session. I didn’t want to do either but I needed those stress hormones to subside. I feel better now than I did earlier. I am focusing now on staying distracted, staying positive, and working to be a better parent tonight. I told her I am sorry and told her how much I adore her. She just smiled and laughed and touched my shoulder. I suppose the purpose of this blog is to say - it's okay to have a wobble. It's okay to struggle. You're doing your absolute best and can't be perfect 100% of the time. Today is very much a new day and whichever Amy returns home from school today I am going to be absolutely delighted to see her. If you are struggling with similar - please don't suffer alone. If your mental health is being impacted make sure you get yourself to a doctor and see what support is available. You can only be your best you when you are looking after yourself. I know that is easier said than done, but it's so important. The post Being A Parent Is Hard appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/being-a-parent-is-hard/

For over a decade now we have lived with a thief in our midst. It comes at any time of the day or night, taking precious memories and skills at will. It is up against a warrior who fights it day and night, with courage that is far greater than anyone of his years should ever have to display.   For a brief period of time in 2011, we were a ‘normal’ family; the shadow that is epilepsy was yet to enter our lives at that point. Even when that first seizure happened one hot August morning at the children’s centre, and in the weeks following, we still had hope that our boy’s epilepsy wouldn’t impact too deeply on his life. By December however it was clear that the thief which had already stolen so much of our beautiful baby’s early skills was here to stay. That is what epilepsy is really, a thief that doesn’t care who you are or what you do. It will come when you least expect it and will knock you off your feet. The last decade has been a steep learning curve. Did you know that not everyone loses consciousness during a seizure? Or that focal onset seizures only affect a part of the brain, while generalised ones affect the whole? I am deeply privileged to have a child who is my greatest teacher and who has taught me what it is to get up and fight the same demons that left you exhausted the day before (and in his case, that didn’t stop attacking even though it was night). He has the type of epilepsy that comes with claws and teeth – a devastating side-effect as it were of a brain that didn’t quite form as it was meant to. As his mum I carried crippling guilt about that for many years. After all, my boy’s seizures are relentless… they have stolen his ability to speak, to walk, even to sit unaided. He is unable to swallow safely, and despite multiple medications and the medical marvel that is a VNS he still has multiple seizures daily. Our children are genuine superheroes. My boy has a love for life that makes the darkness shrink back, his smile brightens the most difficult of days and his sheer delight and excitement when doing something he enjoys is contagious. Because each skill learned is a triumph; each achievement, however small, is a victory that deserves to be celebrated from the rooftops! I’ve said it before and I’ll say it again; my son may have epilepsy. But epilepsy does not and never will have my son. The post The Thief and The Warrior appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-thief-and-the-warrior/

Being a parent or caregiver of a child with disabilities, you will encounter trying situations that will push you to your limit. It’s simply inevitable. Moments will arise in which you’ll feel the blood in your veins run hot while heavy stress consumes you. There will be times when you literally just want to scream out loud. When we find ourselves here, we must rise above and remind ourselves to JUST BREATHE. When someone utters the careless, thoughtless, cruel “R Word” in your presence… When someone rudely stares or teases your child for being different… When the insurance company takes you around and around on a carousel of never-ending prior authorization requests and denials, instead of helping you obtain the medical equipment your child desperately needs… When you circle a parking lot for 20 minutes, searching for accessible parking, only to discover someone effortlessly hopping back into their vehicle, with no sign of an accessible tag or placard in sight… As hard as it is, and before you explode, JUST BREATHE. There will be times in which your heart aches and you can barely hold back a burning flood of tears. When you’re sitting in an IEP meeting at your child’s school, forced to listen to the “weaknesses” and all the ways she falls short of her same aged peers… When she is unable to communicate that she is sick or hurt… When his anxiety takes over and you just want to “fix it” and make his life easier… Before you lay down and surrender, JUST BREATHE. There will more moments of pure joy and perfect love than you’ll be able to count, too. You will experience magic and beauty in your life that most people can’t begin to imagine. Moments that will melt away all the worry and completely take your breath away. When your child lovingly smiles at you and her eyes light up with wonder… When you hear her most precious giggle… When he wraps you in a tight hug, just when you need it most… When you witness her reach a tremendous milestone that equals climbing a mountain… Remember to pause, JUST BREATHE, and take it all in. The post Breathe appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/breathe/

Parenting a child with disabilities is a daunting challenge, but there are steps that can help you cope The post When Your Child is Different appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/when-your-child-is-different/?utm_source=rss&utm_medium=rss&utm_campaign=when-your-child-is-different

When I first heard my 18 month old had ‘just’ epilepsy and that tests had confirmed she did not have other potentially more scary conditions, I tried to think positively. I envisaged a few seizures here or there, but it essentially being a common, manageable condition that many people live with. It hasn’t taken that path for us, unfortunately. My little girl (Taz, a pseudonym) who is now 8, has a particularly complex epilepsy that dominates our family life. She has a condition called Lennox Gastuat Syndrome. Our gorgeous girl has multiple seizure types, tonic clonics, atonic (drop seizures), focal seizures, absence seizures, tonic seizures, myoclonic seizures and atypical absence seizures. It’s rather a long list. Watching your child go through this is incredibly painful. I now truly understand the meaning of the word heartache, and how physical that can be. We have had many, many ambulance trips and hospital admissions. Calling 999 is now routine for us, no longer newsworthy. If an ambulance is in our street, most of our neighbours will assume it’s for Taz.   Complex epilepsy like this is a terrifying condition to live with. It’s a beast that can jump out of the shadows at any time. As someone with an existing anxiety disorder and who jumps at a toaster popping up, it’s a tough path to tread. That said, we have lots of happy times and in the course of living with this shapeshifting illness we have encountered so much kindness and support.  When Taz is not having seizures she loves to play, ride her unicorn, bounce, run and go swimming. Taz has been through about 10 different drugs and currently takes 4, she has a vagus nerve stimulator and is on a medical ketogenic diet (have a google of those last two if you want to know more). Nothing works to stop her seizures. One glimmer of hope is medical cannabis. Three children in the UK have a prescription for this after it was legalised back in 2018 but there is currently major issues with doctors prescribing it. Please do spend a moment looking at https://endourpain.org to find out more. I have to be a firm advocate for my daughter; in hospital when it comes to drugs that are being given, at school regarding her care and to social care to ensure we have the support she needs. It’s exhausting but I realise my privilege in being able to do this. Taz’s resilience is incredible and watching her bounce back after episodes and get back on her unicorn astounds me every time - she’s just magic. For more information on epilepsy visit: Home - Epilepsy Action The post Complex epilepsy and our family appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/complex-epilepsy-and-our-family/

A lot goes on in my head sometimes, most days too much to even think straight. Juggling family life, appointments, work and everything else life throws into the mix is hard work even without adding in the complexities of a medically exciting child! If nothing else, the recent pandemic has made me re-evaluate a few things and reprioritise… my work/life balance is sorely in need of attention for one thing, and like most my mental health has taken a battering. So, it was with a gleeful grin that Mr V and I booked ourselves a few days away over half-term with the Dude to give us the chance to spend some much-needed time together as a family, and to catch up with friends we haven’t seen in far too long. It is always during this precious time away from the chaos of our daily working lives that I manage to carve out a bit of time to just decompress and unwind – somehow it never quite happens when we’re at home. There’s always something that needs doing, whether its housework or another form to fill in, and appointment to chase up or an email to answer… its never quite the right time to down tools and stop. So, while away, I allowed my brain to do precisely that. Being surrounded by nature has always been my greatest healer Technology has given us many great things, without it my son wouldn’t have as good a quality of life, however for me it feels toxic and constraining at times. Being contactable anytime and anyplace is not a natural state, nor does it allow us to be all that we are. Being in a woodland, or in the mountains allows my brain to relax and for me to regain some perspective. We are lucky enough to live in a rural area, surrounded by woodland, fields and a nature reserve which almost backs directly onto our garden – this is not something everyone can say! But even within a city, there is always some form of green space where you can go and relax. As special needs parents, it is so important that we look after our own health, physical AND mental, to allow us to effectively care for our children. That is even more the case when we feel we don’t have time to do so, as that is the point when we are approaching our limits. Do yourselves a favour and allow yourself time to stop and breathe. Your mind will thank you for it. The post Just Breathe appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/19675-2/

There is a monster that lurks in the shadows, always just one step behind. It crouches and stalks, silently preparing to strike when you least expect it. You always know it’s there, and you do everything in your power to stay two steps ahead of it. Epilepsy is a beast that will turn everything upside down in an instant. It is a thief of peace, and it leaves fear, heartbreak, and total chaos in its wake. November is Epilepsy Awareness Month; families like mine are painfully aware of its existence EVERY DAY. We must remain vigilant, never letting our guard down. When your child has a stretch of seizure freedom, it is truly something joyous to be celebrated. With the celebration always comes cautious optimism. “How long will this season of peace last?” We’re always aware that the monster could be right around the corner, and we can’t become complacent in our efforts to keep it at bay. My daughter’s routine has rigid rules built in that we follow strictly. We are aware of her many triggers, and we constantly battle to keep them under control. Meds must be administered on time. Always. She needs plenty of sleep and hydration. We stay away from crowds and try to avoid illness as best as possible. She is nonverbal and unable to communicate to us when something is “off” or just not right, so we take her temperature frequently. Sometimes, there is no rhyme or reason when the stalker shows up. Painfully, we’re aware that’s just part of its nature. Every single time Epilepsy rears its ugly head, our entire family is left reeling in its aftermath. We’d give anything to shield her from going through it; to protect her from its wrath. It has a way of traumatizing us all, each time, and it never, ever gets easier. We desperately try to stay calm as we pray for her to break free from its grasp. Every member of our household knows their part on the team when it happens, and we work together as a cohesive unit to help our warrior girl fight through. We have her back in this fight, and we always will We’ll share information with others and advocate for her in November, and in every other month of the year, too. We’re painfully aware of Epilepsy and all that it brings with it. Aware of the toll it takes. Someday, we hope a cure will exist and the monster can be defeated. In the meantime, we trudge on and continuously watch over our shoulders.   The post Painfully Aware appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/painfully-aware/

We recently attended a disability equipment/services exhibition in Manchester called Kidz to Adultz. We have attended it every year now since Amy was born. One of the unexpected and best things about it is the social aspect. With each year that passes, our network and community grows and becomes more interlinked.  I bumped into a fellow Firefly blogger, charity (PEEPS - HIE) owner, and friend, mum of Heidi, and mum… Sarah Land. We were talking about the complex health parenting journey (or whatever you like to label it) and we were talking about our first visits to these exhibitions. We reflected on our early days as parents in this world of disability. We were still in the “wait and see” stages, not having any idea what our futures would entail. I remember walking around the exhibition and feeling entirely overwhelmed. Surely we won’t need a wheelchair van? Why are there hospital beds with padding on them? Why is everything so medical and mechanical looking? I don’t understand any of this… maybe this isn’t for us.  So other than to look at the Firefly stall (which by this point we already owned ALL of their stuff as it enabled us to use shopping trolleys, park swings etc) it made us feel further alienated, scared and confused. Fast forward to today, Amy is almost 8 years old. Our experience here is now entirely different. We see the “hospital looking bed” and say WOW look at the colours it comes in!! We see the wheelchair vans and are impressed at all of the different ramp options and seating configurations. Pretty much every stall here is relevant to us now… and do you know what? We don’t feel alienated, scared and confused. We feel excited - what great pieces of technology have come here today that could make our lives easier, more fun, safer etc. Sarah said to me. “What changed for us all?” and this was a great question. I think the answer is time. Time is a healer. I remember being told many times that things would get easier. That we would adapt. That the grief will fade. I remember feeling hot with anger and trying to suppress tears when hearing this. How could anyone know that? I never expected that we would be the ones needing ALL of the expensive medical equipment. I never thought I would be excited at a hi-lo bath, or a wheelchair accessible easel. But here we are. We have come so far. With time has come acceptance, understanding, awareness, and so many other things. There are still days where there are traumatic flashbacks. There are days I just want to cry and can’t understand “why us?”. There are days I wish things could be easier for us all. But we are in a different place now. We know the future isn’t certain, and Amy has been through more in her 8 years than many will in a lifetime. We don’t take a single day for granted, not even the really difficult days. I’m not sure life even became any easier, I think we have adapted and became more resilient. Our life is still packed with appointments, admin, meds, ambulance trips, hospital admissions, the fight for services and equipment, the fear of vital services being withdrawn etc. Amy is heavier now, her equipment is larger and her health needs have increased vastly over the years; and yet all I can think about right now is when our extension/adaptation work is done on our house and she can relax her sore legs in her very own hi-lo bath.  Life doesn’t look how we had planned, and I have learned - never plan!! What happens will happen. All you can do is hope to have your loved ones by your side supporting you along the way, be grateful for every little thing, and to cherish the happy memories you make amongst the chaos. The post Kidz to Adultz appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/kidz-to-adultz/

Half-term is upon us – not entirely sure how that came round so quickly but here we are. As is always the case with the Dude, he has taken all the changes that the last couple of months have brought in his stride. I do want to know however who is the monster who thinks it is acceptable to schedule in multiple hospital/clinic appointments and/or reviews in the space of two weeks just as he is getting settled into a new school routine?! Seriously people, the entire summer passed with barely a whisper from the appointments office and yet as soon as term began… One of the appointments I dread more than any other are his spinal reviews. The Dude developed scoliosis, at 4 years old. Like so many children with his neuromuscular issues, the weight of the head is just too much for the muscles of the spine to support so the spine gradually curves over to the side. We know surgery is the only way to ensure that the spine is stabilised and prevented from curving to the point that it crushes his heart and lungs, but that is not something anyone wants for their child. This time, we’re seeing his surgeon. Thanks to covid-19 it’s been A While since we’ve seen him, and he is concerned that the chaps spine may be reaching a level of curvature where difficult decisions around surgery can’t be postponed. It’s the appointment I have feared for almost 7 years. I spent much of the afternoon sitting in the waiting room while the Dude and his Dad are down in x-ray, trying to hold it together. I have no idea why scoliosis terrifies me so much – after all, we have lived with uncontrollable, life-threatening epilepsy since he was a matter of weeks old, and yet there is something so insidious about the way a curved spine will slowly continue to worsen, gradually causing my child increasing pain and disability, that eats away at me. And is so often the case with these amazing little people, the appointment went better than we could ever have imagined – a combination of excellent postural support from his wheelchair, a superb sleep system than he actually LIKES (I kid ye not), and a dynamic orthotic suit that supports his spine means that his scoliosis is relatively stable… surgery can wait for a bit longer. Fingers crossed we can keep him well enough that surgery can wait until growth rods are no longer required and he can have a single surgery to fuse his spine and sort this scoliosis once and f The post Appointment anxiety appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/appointment-anxiety/

Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment? How do you recover from stressful events? How do you navigate them whilst they are happening? Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed. When she is distressed she rips at her hair, she pinches and kicks those around her. She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury. Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up. My jaw tightens and clenches, my muscles tense, and my heart rate increases. In that moment all you can do is keep breathing, and remind yourself - this is how she communicates pain, this moment will pass. Recently, Amy has had a few ambulances due to respiratory issues. In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing. I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine. In the ambulance my back twinges as I struggle to reposition my panicking child. She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy. The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me. Continue to try and comfort her and stop her from injuring herself. In the hospital I remain calm as I explain what has happened for the third, maybe fourth time. I reel off her list of medications again, for the third, maybe fourth time. This is the process - don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully. Fast Forward a week. Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies. We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood. Immediately we are faced with “what’s wrong with her? Why is she in that chair?”. I am grateful people ask - it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability? Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on. I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me. I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm. Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week. I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk. It goes ignored. I tell myself - maybe she’s having a really bad day or is extremely busy - don’t take it personally, don’t let it affect your day.  In just writing this I feel myself tighten up and feel angry. Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration. For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well. I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through. Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow. Sometimes those moments you endured will catch up with you and eat away at you. What do you do to deal with this? Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym. Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals. Some days I’m too fed up and exhausted for that - and that’s okay too. You have to listen to your body, and when time permits - give yourself chance to heal. It sounds cheesy but self care really is so important. It's harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment. If you are struggling - please go and see your GP. Talk to someone. Don't just wallow and suffer. Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them. The post Time to process - Complex Health parents & stress appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/time-to-process-complex-health-parents-stress/

Sibling relationships are important. I am the fifth child out of six children. I’ve always been very big on my siblings. And I still am yet to this day. I had the best childhood just being around them. Fast forward to today. I get to watch my children share a bond as siblings. It's my most favorite thing to see. I am the mother of three children one of which has special needs. He’s also my only boy. He and his sisters share a special bond. They know what he wants without him saying a word. They're always spending time with him and checking on him when he’s too quiet. They make sure they have conversations with him and that his presence doesn’t go unnoticed. Even their friends know and acknowledge him when they're around. I think my most favorite part about their relationship is how excited they get when he does something. The things that seem small to others is so big to them especially when he does it. Recently they had an eLearning day, and my oldest daughter was helping him with an assignment. Throughout the assignment, he had his moments, but she kept assisting him. When they got to the last part of the assignment, he wanted to do it. His sister was so excited, and I caught it all on video. I love recording random moments with them. Seeing them love on each other makes my heart smile. Another thing I love about them is that they’re always thinking of him. Even on their birthdays they’ll choose what he loves just to see him happy. When were out in stores if they see something that he likes they make sure to get it. I admire their relationship so much because I’ve heard so many families talk about how their other children don’t acknowledge their children that have special needs. I consider myself one of the lucky ones because my son has sisters that really care about him. Sisters that want to include him in their daily lives. Sisters that understand that we love them just as much as we love him it's just that he requires extra care. The post Sibling Relationships appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/sibling-relationships/

Halloween literally means the evening before All Hallows Day or All Saint’s Day, a day festival celebrated on the 1st November each year. The name Halloween is a shortened version of All Hallows’ Evening which is celebrated on 31st October. The origin and meaning of the festival of Halloween is derived from ancient Celtic harvest rituals, but today Halloween is a time of the year that many children really look forward to; a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventures and lots of sweets! The advertising and marketing around Halloween seems to ramp up to greater and greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise. Advertising supports this with lots of TV adverts featuring images of ghosts, ghouls, pumpkins, and spiders’ webs. Then there’s the BBC Strictly Come Dancing ‘Halloween Special’! While Halloween can be a fun time of year for many children, it can be a really difficult time for some, including many children with additional needs. For them it can be a confusing, anxiety inducing, or even utterly terrifying time. But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put alternative things in place to help them, they can safely join in with some fun too but in an alternative way. So, what are some of the things about Halloween that children with additional needs can find particularly hard, and what can we offer them in our ‘Alternative Halloween’ instead: 1. Stranger Danger?   We tell children all year not to talk to strangers, then on one night it's suddenly fine to go around knocking on strangers’ doors. This can be hugely difficult for some neurodiverse children, for example, who can be very literal in their understanding and so can be very confused by this. Why is it OK to speak to strangers today but it wasn’t yesterday? What has changed? What will the rules be tomorrow? Why? 2. Fake or Real?   The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real. Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore and movie quality makeup that makes people look truly terrifying. When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something truly evil, theirs is the terror that is real. Cue massive meltdowns, sleepless nights, and recurring anxiety. 3. I’m Scared Enough Already!   Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out 'trick or treating' very upsetting in itself. Surprises, scares, people jumping out, can all be terrifying. If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved! 4. What About Me?   Then there are the kids with additional needs or disabilities that don't get invited to the parties or to go out 'trick or treating' because they are viewed as ‘different’ (usually by other parents, rather than the other children). Here’s yet another opportunity for them to feel left out, rejected, and uninvited because they haven’t been included… yet again.  5. Parent Problems!   It's not just the kids. Parents of children with e.g. ADHD may not be grateful for their children being given loads of sugary colourful sweets when they are then up all night with a hyperactive sugar fueled child!  There are loads of other reasons beside these to avoid Halloween, but there are also many ways to offer an alternative to Halloween for all children, but especially for children with additional needs and their families so that they can join in too; here’s 10 ideas:   10 Helpful ‘Alternative Halloween’ Ideas   Prepare them in advance, giving them a visual timetable of what is going to happen, how and when. This will help them to be less anxious about what might happen.  ‘Prime’ some friendly neighbours who are known to the children and that you can visit safely knowing that they won't do anything scary or surprising. They can, for example, have their outdoor lights on and a bucket of packets of sweets or snacks ready for the children to enjoy safely. Maybe the children could sing their favourite song as a ‘thank you’.  If you are near the countryside, or a park, go for an autumn walk (or roll, make sure your route is accessible), collecting conkers and fir cones, picking blackberries, kicking or throwing up the fallen leaves, looking up at the stars. Remind the children to bring torches with them and have some hot chocolate and biscuits ready for when you get back home.  4. Provide ear defenders for children with sensitivity to loud noise so that any unexpected noises, fireworks etc. are less of a problem. Choose alternative, ‘bright and light’ outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of non-scary, positive, options to choose from.  With this in mind, maybe host an alternative ‘light party’, a counter-cultural celebration of things that are bright, light, colourful and good. Loads more variety with the dressing up, just as much fun, and no scares! Who can dress up in the brightest costume?!  Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ with a smiley face for example).  Maybe even have an ‘autumn indoor picnic’ where you spread out some blankets and enjoy a feast together, or if the weather is good an autumn barbeque with lots of lighting to keep it bright.  9. If you are hosting a light party or autumn picnic/barbeque, think about who might be left out and make sure you remember to invite them. Have fun but keep checking on how each child is feeling. If they are struggling, have something that they love doing ready so that they can easily try that and have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, a bubble machine, apple bobbing, toasting marshmallows…)And have a ‘safe space’ they can access if they just need a rest from all of the activities, fill it with cozy blankets, cushions, and provide soft lighting. I hope that ‘Alternative Halloween’ is a great success for you all this year, especially for those of you looking after children with additional needs!  The post How about an ‘Alternative Halloween’ This Year? appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/how-about-an-alternative-halloween-this-year/

This article is written by Mark Arnold’s daughter, Phoebe, who shares her experience of growing up as an additional needs sibling to her brother, James, as well as offering learnings for us all… Growing up I didn't often see a family unit similar to my own; from a young age I was a carer for my younger brother, James, who was diagnosed as Autistic and with Learning Difficulties when he was 2 ½ and I was 5. By the time I was a teenager, James was still non-verbal and needed around-the-clock care. As a young person this was my ‘normal’, however, it came with its challenges as I navigated my teenage years with a disabled brother. This article shares five ways in which people who parent, care for, or work with, children and young people can help to support the siblings of children and young people with additional needs. 1. Notice Growing a good relationship with the young person helps to keep useful communication open. Encouraging this allows siblings and parents to discuss if anything has happened during the week, or the night before, and parents can be on the lookout for any potential behaviour changes or if the young person is ‘out of sorts’. Young people that are in a family unit with a sibling with additional needs also have an increased chance of having difficulties with their mental health due to their intense home lives. Parents and young people can work together in understanding what would work best to support them well (see: 4. ‘Offer Support’ later, for example). 2. Encourage It is important to encourage siblings of children and young people with additional needs to think about how they respond to situations. For example, acknowledging that they may get frustrated with their sibling, but then encouraging them to exercise patience and kindness. Sometimes the family unit prioritises their child with additional needs due to their significant needs, which can lead to the siblings lacking attention from parents. The consequences of this can show up in different ways, like looking for additional and perhaps inappropriate attention elsewhere or having issues with control. A way to manage this is to provide encouragement and appropriate attention and to understand that if there is a flare-up in behaviour then there is usually a cause such as something going on relating to their sibling, or that they are feeling neglected. 3. Listen When telling someone their sibling has additional needs, young people can get awkward, and parents and carers might not know how they can help. It is essential to try and learn if the young person is comfortable talking about their sibling with other people or not. Typically, for a young person with a sibling with additional needs, it can be normal to talk about their brother or sister at home, so helping them to start this conversation both at home and in other settings can be very encouraging to the young person. This is a valuable conversation to have on a regular basis, as it gives young people an opportunity to safely discuss how they are feeling. Siblings often feel they cannot talk to their parents about issues in their lives because they do not want to put anything more on their parent’s already overloaded plate. Helping siblings to know that it’s OK to talk, particularly in stressful times for both them and their families, is important. 4. Practical support Another way that parents and carers can support siblings of children and young people with additional needs is by identifying a safe space for them to come and use as a quiet environment for e.g. completing homework. This could be at a friend or family members house, a library, or some schools offer homework clubs. For these safe spaces, understanding and meeting siblings’ basic needs is crucial, such as supporting the young person by providing a snack if they have missed a meal, or a quiet place to relax or rest. Also, it is helpful to be aware of resources to direct young people to, such as counselling, sibling groups, or respite care. This can be done effectively, without stepping on the toes of the parents, by working together to meet the needs of the young person. It is great to connect families with children and young people with additional needs together, so creating opportunities for families to find those networks, share teas and coffees, or create other activities as a great way to support all of their families, including siblings. A great support network for siblings is ‘SIBS’: www.sibs.org.uk An organisation that helps set up additional needs family networks is ‘Take 5 and Chat’ www.take5andchat.org.uk 5. Training Growing up I found a church youth group where I could have time away from home in a ‘safe space’, which acted as respite for me. During my teenage years, I had the opportunity to serve and get a break from my caring responsibilities at home when attending youth groups. The youth groups provided respite from my brother, but there were times when my peers that had additional needs experienced over stimulation and sensory overload resulting in them getting overwhelmed and distressed. My knowledge and experience of additional needs meant I ended up providing support for a peer due to our youth leaders lacking additional needs training. This took away from the respite aspect of church and led to me going from being a young carer at home to having similar expectations for my peer at church. Youth leaders having a basic level of additional needs training makes sure that youth groups can include children of all needs and abilities. If siblings are in the same youth group as their brother or sister who has additional needs, then the sibling may be happy to help with their support and care, but sometimes they will want to focus on doing their own thing. Ensuring that the young person is not solely responsible for their sibling with additional needs while at youth group is useful as it allows them to make their own choices about their caring responsibilities. Find out about additional needs training here: www.urbansaints.org/additionalneedstraining I hope these five ideas may help in supporting the siblings of children with additional needs, however, they may have ideas and strategies themselves that are much more effective for them. Start opening up those conversations, siblings can really benefit from extra support but feel like they are not entitled to it because they are not the sibling with additional needs. Encouragement goes a long way so don't be afraid to start that conversation! Phoebe Arnold The post Five ways to support Additional Needs siblings, an overlooked group appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/five-ways-to-support-additional-needs-siblings-an-overlooked-group/

My favorite color has always been purple until I had my son. And its funny that purple still has meaning in my life as well.  At the age of one my son was diagnosed with cerebral palsy. There are several different types of cerebral palsy. My son has hemiplegia which only affects one side of his body and in his case, it’s the right side. He’s still able to do a lot of things but there are some limitations. He always amazes me when he does the things they say he wouldn’t do. During his first year of life, he mostly laid around. Then when I had my daughter and she started accomplishing her milestones. And there he was trying to do them too. I remember when he started trying to crawl. He was three years old. I was staying in an apartment. I couldn’t believe what I was seeing. Even today I love seeing him crawl. And I truly believe that one day he will walk. Now he does so much more than crawl. He’s able to climb up and downstairs. Drink from a sippy cup which is huge because he’s been a tubie all his life due to aspiration to the lungs when he drinks by mouth. After a swallow study he was approved to drink by mouth because it no longer showed liquids going into his lungs. And this is very common in children with cerebral palsy. Green became my favorite color when I found out it was the color that represented cerebral palsy. I love wearing green for Jaylen. I also wear purple for Jaylen for epilepsy and even blue for autism. But his very first diagnosis was cerebral palsy. We are very big on green in my house. Having a child with cerebral palsy has taught me so much. My son is my most informative teacher and he doesn’t teach me with words. He’s unable to talk. He taught me through courage, strength and most importantly unconditional love. You know how they say actions speak louder than words? Well, that saying is true because although I never heard him say he loves me I know he does. The post I wear green for Jaylen appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/i-wear-green-for-jaylen/

I have a few big fears as a special needs parent: What will happen if I die? What will my child do when she finishes her education? What if my child gets ill and I don’t realise because of her communication difficulties? How do I make sure my child keeps safe when they are so vulnerable? And what on earth will I do if the frozen food shop near me stops selling their nuggets? That last one is seriously one of my biggest worries. Why? Well because that one brand of nuggets is the ONLY thing my daughter will eat for breakfast and lunch every single day. Even then, unfortunately, she doesn’t even eat the full nugget just the batter coating. Honestly, that’s all she eats! Dinner is the only meal she has anything different and then it’s just one brand of pie of which she only eats the soft pastry and nothing more. On a good day, we might get a spoonful of baked beans but never any other vegetables or fruit or bread or meat of any description. It’s not for want of trying I can assure you. Her twin brother eats almost anything from pork stir fry to chicken curry to broccoli, kiwi fruit and anything else put in front of him. My cupboards and fridge and freezer are full of a full array of delicious healthy foods that she’ll happily put in the supermarket trolley or even cook…but never ever eat. Of course, I worry about her diet so much. I worry about how it will affect her growth, her brain development and her bodily functions. I worry how it will limit her life experiences and isolate her. Most of all I worry that it will affect her health and her immune system. Over the last thirteen years I have tried everything from bribery, reward charts and involving her in the preparation and cooking. None of it made a difference in any way. Eating simply causes her severe anxiety. She craves consistency, predictability and understanding. What many just dismiss as ‘fussy eating’ is anything but. In fact, her limited diet is due to severe sensory issues, heightened anxiety and the rigid thinking that so often accompanies autism. Pressurising her to eat something else, or even worse making a different brand and ‘pretending’ it’s her safe one, only makes everything worse. Incredibly her recent blood tests came back normal and she’s growing, developing and remaining as healthy as her peers. Her bodily functions work perfectly and accidentally she’s doing well. So despite my worries I readily and willing cook those nuggets yet again praying that the company never decide to change the recipe, or even worse, discontinue making them. I allow her to eat where she’s comfortable and we never force her to eat at the table surrounded by smells, colours and noise that overloads her senses. I listen to her, respect her choices and let her know that if she ever wants to try anything else then she’s free to do so. Maybe one day she will. Until then I pray that battered nuggets will always be available when we need them. The post The worry of a limited diet appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-worry-of-a-limited-diet/