Have any of you heard about the changing places campaign?
No? I wouldn’t have thought you had either, because you see, this amazing group of SEND Bloggers that I am very proud to be a part of, are struggling to have their voices heard, Struggling to get their message out there, struggling to make anyone who have any influence on social media spread the word help people to understand and make changes that these disabled children and adults so desperately need. The Changing Places campaign has been started to try and persuade companies, and councils to provide fully accessible #changingplaces for Disabled children and adults. Not for big toddlers, as some ignorant and disrespectful people have previously stated, based on one title of a very well written blog by Laura Rutherford. https://www.facebook.com/HuffPostParents/posts/1247634141925593 Find more of Laura's Campaign here https://brodymeandgdd.wordpress.com/about-me/ These changing places will allow caregivers to safely, and easily maneuver disabled people without putting their selves or the child or adult they care for in danger. It will enable the disabled person to be cared for properly in a dignified manner. This isn’t just what they deserve, or need, It is something that should be available to them without this unjustified fight. Currently there are only 898 of these changing places in the UK, and some areas do not even have one, leaving disabled families vulnerable or isolated. There are 11 million registered disabled people in Britain. These families, not only struggle with disability day in day out, but they are currently having to spend precious time, and energy to campaign for something that fully abled people have unlimited access to. Ask yourself, How is this even fair? Imagine for just one second, that you were living way back in the dark ages, when there weren’t any changing places or public toilets, there weren’t proper toilet facilities and running water, Instead you had to go outside the shopping mall, in broad daylight, squatting down in a communal area where there weren’t even holes. No toilet paper, no cubicles, people walking past you. The smell. The view. No where to wash your hands and no where to put your waste. Disgusting isn’t it?? Now bring your self back to the present. There much better. Times move on, things improve. Living, shopping and travelling conditions get better. FOR YOU If You’re NOT disabled. These parents, and carers are campaigning to bring the disabled changing facilities from the dark ages and into the future. Where these actual human beings aren’t subjected to being changed and cleaned on public toilet floors or in the boot of their cars, Breaking their backs, because that small child who once fit on the changing table grew, and guess what, he is still disabled, still unable to bear weight, and still unable to use the toilet when they need to. It is not right, It Is inhumane and these people deserve better. They deserve to have “normal” experiences, and be able to have access to every single place that you and I have access to. AS STANDARD. Please help us, give them what they need. Please Help us ........... Help us to spread the word, share the #changingplaces blogs, far and wide for all to see. Help us get this message out there and make a difference to these peoples lives once and for all so that aren’t isolated, and they aren’t vulnerable. Help Us to Change these Places! We don't want #PhantomLoos anymore we want #ChangingPlaces
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Ok I wasn't going to get involved in this debate at all, because it's really heated and out of control to be honest. Some of the parents involved in this debate really need to think twice before insulting 16 year olds on social media. It's really disappointed me. But I am going to get involved because I just realised that if Stanley doesn't have an EHCP sorted before secondary school he's probably not going to be allowed in. Why? Because some of the symptoms of his diagnoses, mean that he's very forgetful and doesn't have great executive functioning, he misplaces EVERYTHING and finds most uniform uncomfortable, because of his sensory differences. He also has an extreme lack of care and attention to how he dresses and how he looks. His appearance is not of importance to him. Being comfortable and secure IS. So where does this leave us in two years time when he HAS to go to school, and comply with these simply ridiculous uniform expectations for children who are not "normal" or have difficultly in understanding why this is so important? See Lola's socks in the photo for example, she was having a particularly bad morning and when she's anxious she likes to wear brightly coloured socks, (don't ask) considering she's mainly an anxious child she would be sent home every day) I put a note in her diary along with some white socks to change into. Hopefully they'll understand and I suspect it being a special school they almost definitely will. Will Stanley have that luxury? I think not. It's hard enough for parents and children who are neuro typical, and don't have these difficulties and I'm worried. Who makes up these rules, is it The headteacher? Do they use a set of guidelines? And If so who wrote them? Did they take into consideration that some of our children struggle to even dress themselves properly at age 9,10,11? Did they think that every single child would be able to comply 100% to these rules ? Are they setting children up to fail? What is the purpose of the strict uniform guide lines? To make everyone look the same? To better their learning and oppertunities? To make them concentrate more? Do the people who make these guidelines, and then the teachers who add into them their own policies, have children? Do they have children with special needs? Or memory problems? Executive dysfunction? Sensory difficulties? Do they have experience of a child who simply cannot manage to do buttons up after P.E due to hypermobility or low muscle tone in hands and fingers, or coordination difficulties, Or re- do a tie? Tuck their shirt in? Or tie their shoelaces? Or even remember where they put all of the above? Who will support these children? Is having such a strict uniform policy going to enrich their future? Make them more successful? Be the next Bill Gates or Richard Branson? I know that for a fact one of these has little education and one could possibly have aspergers, or as it's known now ASD (autistic spectrum disorder) Now I'm not expecting special treatment for these children nor am I expecting that everyone will agree, and that's simply because there is little tolerance or understanding. That's why I write about things I feel passionate about, to get a little understanding and to gain a little more tolerance and acceptance from people who don't understand. I feel that by creating a policy that's so stict with little movement, will further hinder children's education. Not least because they simply can't manage but because they aren't being helped to manage, and they aren't being given a choice but to comply to something that is simply out of their control. And this situation will be particularly hard for children who didn't meet criteria for an EHCP (education, health and care plan) before they went to secondary school. They will have no leeway! They WONT have a choice. They will have to comply or they will be excluded. Is this creating a merry go round of exclusions and school Refusals for our already vulnerable children? Will they settle down and just "get on with it" or will they rebel and fall at the first demanding hurdle? Wouldn't it better if everyone was comfortable? And wouldn't it enhance their concentration and attention if they didn't have to worry about what they looked like? I just wish that the people enforcing these polices could fully understand the true difficulties some children face when presented with an itchy, scratchy, fiddly, complicated and in their eyes unnessecary uniform policy! Sensible debate? I'd like to hear all of your opinions and how this situation has affected you and your families? Wether you have children with any extra/special needs or not. I agree that children should look smart and have the correct uniform, I agree that it prepares them for the wider world, and I agree that rules are rules, but are these rules going beyond Trying to teach children the way of life or are they justified. Not everyone is going to on to a job which requires them to dress so strictly, yes some will, but what about young men who wish to be a builder? A swimmer? Young ladies who wish to follow a carer in acting or dancing? What about the rest of them that will become carers for poorly family members? I don't get it, help me........ J. X last year I wrote this poem for Lola, o think it was more for me really, as I other refer to it and read it over and over again.
You're holding my hand You're guiding me through There's so much to learn About all of you Sometimes I struggle Struggle to see That it's not your fault Nor the fault of me We blame ourselves So little time Not enough energy It's like we're blind. You're holding my hand You're guiding me through There's so much to learn About all of you That beautiful face, you're caring and kind Determined, strong willed and cheeky springs to mind. We have lots of good times, but then lots of bad. It's only just recently it's made me so sad. The fight for you, has ground me down. Everything is in place I can rest now. I wouldn't change it though, and I would do it again, I will fight for you Till the very end. You're holding my hand You're guiding me through There's so much to learn About all of you Someone once asked me What strengths do you have. I stumbled, and stuttered, couldn't think I said! Silly me! Like I said I was blind I was deaf! Really and truly I should have said.. You're funny, you're kind, so determined it's crazy Your caring, ambitious, and never lazy. Your silly and wonderful. So sweet too, that you make me so proud just by looking at you! You're holding my hand You're guiding me through There's so much to learn About all of you 💗💗 The poem reads that I can rest now, everything is in place. I think this is very significant to our future, because since I wrote it so much has changed, so much more support has been out in place including a specialist school to start in September and this just proves that my fight, and my work, and everything that needs to be put in place for my children will never ever end! I will continue fighting. I will continue to be the very best that I can be to achieve everything for my children that I possibly can. I I hope you like the poem. We love it. 💗 J X Being a parent isn't easy, and being a parent with children who have extra needs and disabilities puts an extra strain on you and your family. For me, that strain is tenfold. Lola's behaviour is very exhausting which is a result from significant anxiety. She displays this behaviour with violent outbursts, uncontrollable hyperactivity, and such poor attention and concentration that she cannot focus on anything, unless she has help with medication. I'm not going to turn this into a medication post but the meds that she is on has allowed us to visit places we wouldn't normally be able to, allowed us to spend some family time having meals out. Or taking them all to a park, albeit very rarely and for shorter periods than we would like but a visits a visit nonetheless. But this behaviour is constant, consistent and totally neurological! So the strain that is created from this has a massive impact on the whole family. So when I found a lady called Victoria who offered a place for Lola at her SEN dance class with chance to dance I grabbed it with both hands! For one hour every other Saturday, I took her and dropped her off, I was able to run a few errands in that time without her, taking things to be posted. Or picking up prescriptions from the chemist. It was the little things, and it helped so much! I used to turn the music down on my stereo and just drive! 40 minutes of sheer silence, a cup of tea from the local cafe was bliss, I mean I found those 40 minutes every other weeks the most anticipated of my life. It doesn't sound very much, and sitting in my car doing nothing? Sounds a bit dull but wow the things I mentally achieved in that time! In silence! It was heaven!!! And then they offered respite sessions, once every four weeks they took the children out on days out, these children got to access things that they maybe wouldn't have been able to access with their own families for a number of reasons. I looked forward to these sessions so much, it was 3-4-5 hours of respite we desperately needed. Not just for ourself, but for the other children too. They got to go places, eat out, spend time with us. We can go months and sometimes even as long as a year without going out and spending an evening without the children. Our life is so mapped out that we never factor ourselves in for some time together and it's something we really must work on. When chance 2 Dance playscheme came to end, I felt a bit lost, I wondered how we was going to manage without that time. But they didn't just close it down, these very special people decided to offer personal respite! With lots of different options and even though I've yet to use this service I know for a fact It will be something that we access soon. There have been Christmas camps, and this year a summer camp. I put Lola's name Down for a whole week. It was risky because she's been known to refuse and I don't like to push her, but day after day, morning after morning, she got up and dressed without so much as a moan and we set off bright and early. She spent the whole day there from 9-5 and she absolutely loved it. She was so good, and took part in everything. Apart from one day where I didn't give her her meds and she had a bit of a hyper day, and didn't have her listening ears on! (I didn't make that mistake again) but what's more, I got to take Connie and Stanley on days out. We went to London, yes LONDON and we spent a whole day walking around KEW gardens without a care in the world! I will remember that day for a long long time! One day Stanley had his friend round and I took them out for the day, he got to socialise and be free and unrestricted and in control! He had such a lovely day! I would never have been able to do these days with my fantastic children had this camp not been on offer! I'm so proud of how far along Lola has come, and how much she's achieved, specialist teaching makes all the difference, I mean at her mainstream school she barely got on stage for a play, or took part in their assembly's, she was so overwhelmed at one play that she was quite visibly stimming in the corner. Chance to Dance have provided a platform for Lola, one that she can jump on and be herself next to people and children who "get her" are more like her and completely accept her. She feels comfortable, and she is more relaxed. At the beginning of this year she even got on stage at one our biggest theatres and performed in front of hundreds of people. Including the Mayor of reading! Some achievement! So if you live near anywhere that provides a service like this, get your child's name down! It's invaluable! It's comforting, it's inclusive and what's more. These fantastic volunteers do it for love, not money, they're motivated by success and understanding, and they are working towards a better future for our children for inclusiveness and acceptance. For that my family and I and all the families who are a part of this wonderful dance group will be forever grateful. Yesterday they held a family fun day after the last session of a summer camp that they held this week. Everything was free! Food! Drink, bouncy castles and slides, The Mayor once again attended. It was a fantastic day and the children all took part in a relaxed performance of what they had been learning this week! So from all of us to all of you, thank you from the bottom of our hearts! P.s please don't ever close down..... P.p.s WE LOVE YOU! 7 years!
It's a song right? Some of the lyrics fit really well into how I feel about life, it's like a big jumbled up puzzle of it, only some pieces are inside out and upside down so it doesn't totally fit together! 7years and 9 months and four days ago I fell pregnant, We were elated. I'd miscarried the month before so things were tense but my little bean stuck! We spoke about names, and spent a fortune on clothes and nursery things and feeding equipment. We talked about our hopes and dreams. I imagined having a little girl, buying pretty dresses, and plaiting freshly washed hair. Having little pretend tea parties and play dates with other families. We imagined holidays with the children. Going on shopping trips for clothes and party dresses. It was so exciting! A new baby. I already had a boy, would this be my girl? I hoped so! Pregnancy was long and tiring. But at 8:50pm on the 30th July 2009 my gorgeous princess was born 4 days over due weighing 5lb 150z and she was absolutely perfect! She was adorable. She was bald. And she was tiny! I've written a series of blog posts before on the chapters of our life with little lolly and how hard those first few years were. Things were very strange. Nothing was normal. She couldn't even keep down a bottle. We struggled with Lolly from day one. And when things didn't change and she grew in size, but didn't seem to follow in all her milestones grief struck me big time. I'm not ashamed to admit that I wondered where my princess was? I didn't sign up for this child? She was angry, violent, confusing, and never happy. I couldn't take her anywhere at all. Driving was so stressful, we couldn't go on holidays because it was a danger to everyone. I could only make short journeys and even those were very difficult indeed. Why wasn't my baby happy? There were no pretty dresses, no shopping trips, and certainly no freshly washed hair with plaits! In fact I couldn't even touch her head. I knew what was wrong and it took me two years to finally convince everyone else. But still I grieved for that other child, the one I could take to the movies and sing songs happily with, the one that would help me cook. My princess! But the bond we had was astounding. Sometimes suffocating. But wonderful all at the same time. We were one, we understood each other. I knew her mind, her soul and I felt her pain and her suffering. I would know what she wanted with just a look, or a turn of the head, I had to stop myself finishing her sentences because she was delayed with speech and language, instead I had to use encouragement and guidance. I HAD to help my child. Instead of longing for my princess who quite honestly must have got lost, (someone must have given her the wrong directions or something) I had to understand and guide her, and everyone else for that matter. I don't know when I stopped grieving for my princess. I honestly can't remember it was a very long time ago, probably about the same that I lost my sanity. But I don't grieve about pretty party dresses anymore, or plaits, or going shopping for clothes. I indulge us both in other ways! I indulge her obsessions. we don't buy toys, and normal things for birthdays. Birthdays have consisted mainly of sensory toys for years. Sparkly night lights, weighted blankets and silly putty. Let's face it there's only so much you can have right? This year her stationary obsession has been well and truly indulged and I'm so jealous. I still wonder sometimes what it would be like if I had my little princess, only briefly, because then it hits me. I DO have my princess. She's here with me, she is beautiful, and kind and thoughtful and loving. She is funny, energetic (my god is she energetic) has the most Infectious laugh, and is so endearing and innocent that it melts my heart. My princess didn't get lost, she was just made differently. It was me who was lost, lost in grief for the "normal" all those things in the first paragraph. But this is my normal now. I'm actually quite used to it. It's hard work but she is who she is, and no amount of grief is ever ever going to change that. But it's ok, to feel grief is normal. Grieving helps the process. It helps acceptance and it helps us to become who we are, to love unconditionally. It's ok that she needs Lots Of Love and Affection. Because every child does. And that's normal! 💗 So to those of you in those first stages of this pathway that will lead you to your own normal, grieve away, because once you get there you'll understand that it's ok! 💗 And to my beautiful, funny princess, a massive happy 7th birthday! We love you no matter what. 🌺 J X My sister loves me! No matter what!💗
The siblings of special needs children need special praise and attention for all that they do and have to live with. Let's call them sibs! Now let's face it, sometimes there isn't enough time in the day to show these little Ray's of light and hope how much they actually mean to us and the special needs child in particular. Most of time were too exhausted to remember how much they have to put up with, or how much they need to help out. Sometimes we don't even see what they actually do as its just the "norm" in an un-normal life! Sometimes even the rays of light and hope have special needs. Sometimes their special needs get overlooked due to one child needing so much 1:1 it's impossible to spread yourself evenly and fairly! You might be in a position where you have two or more children with special needs (like me) I won't list all of the diagnoses we have as a family but let's just say there are a lot. Two have diagnoses of autism and other things and one is on the assessment list. So you can imagine how difficult it is when you have one with quite high needs, and two others that alter between having genuine bad days themselves and being an utter gem! I find it alternates between them when one is having a particularly good day the other is at a peak of high anxiety and hard to control. (For want of a better word) Sometimes these little helpers get forgotten, told off for things that are particularly minor to what their big or little sister has just been calmed down for, or sometimes they even calm the child down on their own. My little moo ma never fails to surprise me. She is considerate of her big sisters feelings and so in tune with her that it melts my heart, sometimes I want to cry for the things that she helps her out with. Bringing her blankets, soothing her, just a look, or a "oh poor lolly pop" When in a crisis and there's no adult around to help I have to bark orders at the others, get me this get me that, phone daddy, run a bath. These little things that actually mean so much are just brushed under the carpet. Swept away and forgotten Untill we need them again. On the rare occasion we manage to remember to thank them, but mostly the meltdown or situation that has just occurred is so frightfully exhausting for everyone that all we want to do is be in silence. We want to silently reflect on what happened what could have gone better, what went wrong in the first place. None of this matters of course because it's not going to be exactly the same the next time, I mean we always learn but the mistake of not doing something one time doesn't mean it's going to work next time. What we really need to be reflecting on is what went right! Who helped, what do THEY need now. They need praise, and gratitude, and love and a little little tiny slice of attention. So this is a message to all of those Ray's of light and hope, little gems, Thank you for always being there, thank you for making my job that teeny bit easier and thank you for understanding that mummy might not say it every time but I am eternally grateful that you're here and that most of all "you get it" I felt a little bit of pain and guilt earlier today, moo had just come from an appointment where she had to have her finger redressed, she fell asleep on the way home as it was quite a journey and on the way back we went to pick up her sister and brother from the office as a last minute change of plan. As you know our special children don't do changes quite as easily as most people do and so anxiety was reaching a peak and we needed distraction and empathy to ease the meltdown that was imminent. So Lolly gets in car growling and crying, very frustrated and moo instantly woke up to the sounds of her distressed sister and passed her her hand. "Here lolly hold my hand" she said! And so she did............💗 Eternally grateful is not enough! 💔 More time would be more useful! Overwhelmingly special.
When I first started making my family I never thought I'd be in this situation that I'm in now. Special needs children with an alphabet of diagnoses after their names, I never thought it would be all hospital appointments and Sen meetings, waiting on panel dates and having my children's future decided by professionals who only knew my gorgeous daughter by paper records. I never dreamed that I would have to send one of my children to a special school, why would I? No parents ever think these things, it's not in any manual, there's no instruction booklet for it. It's just quite simply "one of those things" "One of those things" turned into "two of those things" and more than likely a third, but like any parent facing obstacles, we deal with it the best we can. So when I was asked to write out a little something for the panel that would decide my daughters future on which schooling would best suit her needs I decided to be explicitly honest. I'd had enough of form filling, and box ticking. I'd grown tired of using statistical facts, and medical jargon. My child isn't a record. She isn't a statistic, or a bunch of facts, and opinions on a piece of paper, she is more than that, and she deserves the best. She deserves to be on a placement where teachers and peers respect and understand her for who she is, she deserves inclusion and freedom and the chance to be herself openly and honestly. She deserves more than mainstream can ever offer her. So I wrote to the panel but I forgot about the jargon and I wrote honestly. It was a risky thing to do, I mean i put our whole family out there. I wanted them to sympathise with a parent and child who had done all they could, reached the end of a very long road and needed rescuing. I was so nervous pushing the send button on this email, it would have been the most doubtful thing I've ever done for one of my children! The letter did work, it worked wonders I was so surprised, I had a telephone conversation with a lovely man at the SEN dept and he said it even pulled at his heartstrings! And that my friend is how I got a placement for my beautiful daughter and THE best special school where we live!!! Yay!! Had a very interesting conversation tonight with the besties, regarding lolly. We were talking about behaviours. I've had a particularly bad day with everything from the minute I woke going bad, from not getting ready for school, to the dog trashing my house, and someone smashing into the side of my car! It was all very fraught! (We're OK) we weren't in it thank god!!!
But I'd had a meeting at school with Senco, and so had to get little wee one looked after longer by nanny and so our after school routine had changed!! Oh dear god help me! She does not bode well with change and so her behaviour reflected on this! It was going well Untill I had to pop into the chemist, and it was urgent so it couldn't be avoided I HAD to take her in there! All hell broke loose, and she started flinging herself on the floor, trying to knock over stalls of medicine, going behind the checkout! You know just that general outsider bad behaviour! Ha Outside the shop and she starts slapping me and kicking me and I had to restrain her at the car for her safety. It wasn't pleasant! Poor thing cried hysterically the whole way home. Luckily I have an automatic and so could at least hold and stroke her hand which I know she likes and calms her! So after describing my day to my friends in the best way I know how - humorously, a question hovered to the surface of which my friend couldn't quite get out - so I finished it for him. "How do I know when Lollys behaviours are a direct result of her being autistic or having ADHD or wether she's just being a normal child and being a little pickle" I've asked this question before to my sister in law when her first child was diagnosed and lolly was still a baby! The answer is quite simple, you know your child and every child wether autistic or not can a be a bit of a pickle sometimes. You'll understand your child's mannerisms and trigger points and sensory needs or aversions. You'll learn to quickly and promptly assess any given situation for anything that may have caused upset before the behaviours (in our case it was a serious case of change in routine) and if a reward or anything else can avert their attention from tantrum or meltdown. The likely hood of it being a meltdown is slim if for example you can distract the child with what he or she wants at the time. In this case it was make up! No she wasn't having any and even if I brought her some she may have calmed initially but all the triggers were there and she would have been set off by something else! However when we got home, she wanted chocolate and I wouldn't allow this because it was nearly dinner time, she had a tantrum, but I didn't give in. If I would have she would have stopped her tantrum. And she was easily distracted. You see? Even autistic children can have normal behaviours! I guess what I'm trying to say is that, lolly may look like a spoiled brat on the streets slapping me because she couldn't have makeup, I may look like a pushover for not reprimanding her for kicking me and calling me names. BUT understand this- if you ever see this happening in front of you there's more than likely a whole other reason behind these behaviours and more importantly why the parent isn't disciplining as efficiently as you deem appropriate. J Had a very interesting conversation tonight with the besties, regarding lolly. We were talking about behaviours. I've had a particularly bad day with everything from the minute I woke going bad, from not getting ready for school, to the dog trashing my house, and someone smashing into the side of my car! It was all very fraught! (We're OK) we weren't in it thank god!!!
But I'd had a meeting at school with Senco, and so had to get little wee one looked after longer by nanny and so our after school routine had changed!! Oh dear god help me! She does not bode well with change and so her behaviour reflected on this! It was going well Untill I had to pop into the chemist, and it was urgent so it couldn't be avoided I HAD to take her in there! All hell broke loose, and she started flinging herself on the floor, trying to knock over stalls of medicine, going behind the checkout! You know just that general outsider bad behaviour! Ha Outside the shop and she starts slapping me and kicking me and I had to restrain her at the car for her safety. It wasn't pleasant! Poor thing cried hysterically the whole way home. Luckily I have an automatic and so could at least hold and stroke her hand which I know she likes and calms her! So after describing my day to my friends in the best way I know how - humorously, a question hovered to the surface of which my friend couldn't quite get out - so I finished it for him. "How do I know when Lollys behaviours are a direct result of her being autistic or having ADHD or wether she's just being a normal child and being a little pickle" I've asked this question before to my sister in law when her first child was diagnosed and lolly was still a baby! The answer is quite simple, you know your child and every child wether autistic or not can a be a bit of a pickle sometimes. You'll understand your child's mannerisms and trigger points and sensory needs or aversions. You'll learn to quickly and promptly assess any given situation for anything that may have caused upset before the behaviours (in our case it was a serious case of change in routine) and if a reward or anything else can avert their attention from tantrum or meltdown. The likely hood of it being a meltdown is slim if for example you can distract the child with what he or she wants at the time. In this case it was make up! No she wasn't having any and even if I brought her some she may have calmed initially but all the triggers were there and she would have been set off by something else! However when we got home, she wanted chocolate and I wouldn't allow this because it was nearly dinner time, she had a tantrum, but I didn't give in. If I would have she would have stopped her tantrum. And she was easily distracted. You see? Even autistic children can have normal behaviours! I guess what I'm trying to say is that, lolly may look like a spoiled brat on the streets slapping me because she couldn't have makeup, I may look like a pushover for not reprimanding her for kicking me and calling me names. BUT understand this- if you ever see this happening in front of you there's more than likely a whole other reason behind these behaviours and more importantly why the parent isn't disciplining as efficiently as you deem appropriate. J X I'm Tired, tired of "the fight".
I'm absolutely exhausted, and some days it literally consumes me. I hate the world, sometimes. I hate the systems, the protocols, the hoops, that I have to constantly Jump through just get on the right track for each member of my family. Navigating my way around a system of endless turns and twists that don't even seem to know where they want to flow themselves. I'm tired. Tired of the fight. Three children I have, and their investigations and diagnoses', conditions, problems, are endless, their symptoms intertwining like a scary tree, it's branches climbing around each other. Sometimes a little bud may appear like it's going to flourish with leaves and then it just dries up and crumbles, the tree seems to howl at you, laughing. Offering a branch and then snapping it away. Just like the systems offer some hope, some glimmer of light, an answer?, support, and then "oh no sorry we lost your notes" Or "your children aren't severe enough for you to have a carers assessment" Severe enough? Are you having a laugh? Read the notes love and then tell me about severity! Stop box ticking just because you were told to get rid of a certain number of families! Im just really tired now, tired of waiting, and hoping and holding on to something someone said a year ago and it's never materialised. Why do they make it so hard for us? Weaker people are broken, families torn apart. Children ripped from the family home, because their box ticking took priority over research, and history, and assessments and support. Lives are broken and children are suffering. If I am tired, my children must be exhausted. I feel for them, and for that reason I will I not give up or in, I will follow that river and I will not drown, I will climb that tree and I will reach the top. I will see it flourish, because I might be tired, but my children are exhausted. J X |