Autism Acceptance Month ♾️ It’s certainly a journey ♾️ We are still learning everyday, but one thing I have learnt is to ignore those that don’t get it. That don’t try to get it. That are to ignorant to want to get it. ♾️ Because when you do, and when you get to know my child, the world is a much brighter place. ♾️ This month I have watched her grow, mature and become more aware of her needs and being able to communicate them more ♾️ The past 6 months have been tough on us all, but so worth it to be where we are now ♾️ My EB. We do it together pudding ♾️ #asd #autismawareness #sen #adhd #pda #specialneeds #autismawarenessmonth #autismacceptance #autistic #parentcarer #buddiesloveplay #autisticchild #autismacceptancemonth
I'm exhausted I'm coming down with a cold Most of me wanted to go back to bed yesterday But I didn't I'd booked on a day in the woods with Groundworks Wellbeing and @rewilding_adventure_uk and one of the promises I've made to myself recently it's to say yes more, to do more, to live more... The struggles and the challenges aren't changing. The support doesn't appear to be changing The battles don't get any easier But what can change is me ... The way I approach life The experiences I have The life I live So I gathered myself up and off I went And I had absolutely the best day. Learning new skills with new tools, refreshing existing knowledge, meeting new people in the most tranquil forest. The last photo is a woodland mallet, made all by myself from a tree I helped cut down! ... And I'm very proud of it! I was covered in mud, I spent half the time trying to stop myself falling over, I'm aching today... And I will absolutely do it again! [Photo one: the path into the woodland with a sign saying 'rewilding camp' Photo two: the camp under a parachute canopy in the woodland Photo three: collage of four photos of me making a fire then the mallet Photo four: my finished woodland mallet on a tree stump] . . . . . . . . . #dancingintherain #woodland #rewilding #selfcare #wellbeing #takearisk #newskills #woodlands #lifeexperience #forestschool #forestwalk #parent #parentcarer #carer #careforyourself #carerswellbeing #evolving
Our next face to face ADHD training session in the north is ready to book! During this training you will receive guidance on ADHD, what this means for your child/young person and your family, how ADHD effects the brain and strategies you can use to support them. We have 50 spaces available on the session, so two different links for the same training is in use to book your space. Click on the link in our bio to book your spot! #training #free #whatson #northsomerset #adhd #sen #send #parentcarer #professional #support
MEETING 1ST JUNE 2024 ❤️ #sen #adhd #asd #autism #parentcarer #parentcarers #neurodivergent #specialneedsfamily #specialneeds #mentalhealth #support #sendad #pottersbar #connect #supportgroup #share #care #mentalwellness #isolation #trauma #exhausted #alone
We had a neurology appointment last week, they’ve done a plan to wean off of Baclofen and swapping nitrazepam for diazepam. I’ve been chasing up the new med every day since the appointment to be told it’s out of stock everywhere but had a phone call from one of D’s Drs today to let me know it’s been waiting at the pharmacy since last week but when I called the pharmacy an hour before the phone call they had no record of it. Got to go to the hospital tomorrow to figure out where the medication is, we also have a CDC appointment tomorrow and a CVI appointment tomorrow alongside having my baby nephew for the day too 😅 today we had an appointment with a new private physiotherapist, she was really pleased with D and we’ve scheduled some home appointments in. Sleep is the worst it’s ever been, I’d even say worse than what it was like when she was a newborn. D has been on a blended diet since she was probably 10 months old but it’s been mainly pouches but last weekend I took the plunge and I’ve got a blender and I’ve batch cooked/blended all of her meals/snacks for the week and it was a lot easier than I thought it was gonna be, regret not doing it sooner. We have 2/3 appointments daily for the next few weeks but I am in the process of getting D a passport sorted and I’m planning a last minute holiday in June if her passport comes before 🤞 #cerebralpalsyalliance #cerebralpalsybaby #cerebralpalsy #cerebralpalsykids #cerebralpalsywarrior #cerebralpalsymom #dystonia #epilepsy #sen #specialneeds #gdd #physio #solomama #solomum #specialneedsmum #hie #braininjuryawareness #parentcarer
It was fantastic to welcome new parents amongst familiar parents this evening along with @families.empowering.each.other and our charity patron @kims_pageant_life. We talked about a variety of difficulties faced and offered advice and support on how to overcome them. We talked about our children and each other too. Great session all round. Thank you to the parents for joining us and to FEEO, Kim & @torus_foundation for your support. 💛🙌 #FUNConnectAndInform #ParentSupport #ParentCarer #WarringtonCharity #FamiliesUNited #FUN
The Grey's gang does Monday memes ❤️ Have a fave? Or have a meme you'd love to see? Let us know in the comments! #caregiving #disability #parentcarer #caregivers #caregiver #caregiversupport #caregiverlife #specialneeds #medicalmom #CaregiverSupport #DisabilityAwareness #DisabilityInformed #DisabiltyCommunity #Caregiver #CareCantWait #CaregiverTips #MedicallyComplex #MedicallyComplexKids #RareDisease #DisabilityParenting #CaregiverCommunity #EmpathyMatters #memesdaily #medicalmemes #meme
The ultimate after-school checklist: ✔️ Get in our PJs ✔️ Have a drink and snack ✔️ Play with mummy's charity shop bargains!
Neuro… huh? While “neurodiversity” was designed to describe the different ways that all human brains work, it’s largely used in conversations around the likes of autism, ADHD and learning disabilities. As are its offshoots, including “neurodivergent” and “neurodivergence”. Here is where things can get confusing. How do we use these terms correctly? Enter Jess Meredith, a proud ADHDer, parent of neurodiverse children and founder of @differingminds, a social enterprise dedicated to neurodiversity advocacy. Head to the link in our bio for the story 💚 [ID: a white tile with black writing reads: neurodivergent, neurodivergence or neurodiversity?] #autism #autismawareness #autismacceptance #autismcommunity #neurodiversity #autistic #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness
Monday Motivation…Because you’re not even broken, it just feels like you are sometimes. And you, and we together, can fix that. Hang on in there x We are a community of people who know EXACTLY what it’s like, so come to us for a rant, support or release. And if you need more personal help you know where I am. #parentcarer #parentcarerwellbeing #chronicillness #parenting #childhoodpain #childhoodillness #caregiver #childcaregiver #spooniesupport #caregiversupport #caregiverssupportgroup #caregiverssupportcoach #carers
Resilience, the capacity to bounce back, recover quickly when we are faced with challenges and difficulties. Physical and mental toughness. I find myself conflicted about resilience. On one hand I would say resilience is one of my strongest attributes, but there's a reason it is so strong, it's strong because of the number of times I've been to hell and back. But without the strength I now have because of those experiences, without knowing I had that strength within me the last few years would have been very different. But now I hope there are no more resilience building experiences, no more times that I need to dig deep to find strength. I have enough resilience, enough strength, enough experiences. Now is a time for ease, for softness, for contentment. [Image: dandelion seed head just after the downpour of rain] . . . . . . . . . . #dancingintherain #dandelions #aftertherain #resilience #strength #ease #contentment #reflections #lifeexperience #parentcarer #parent #carer #parentcarerwellbeing #wellbeing #selfcompassion #selflove #carerselfcare #caringforcarers
🩷🩷🩷🩷 #autismawareness #autismacceptance #autism #asd #asdpathway #autismparenting #complexneeds #pda #stimming #afrid #adhdmum #adhdinwomen #adhd #neurodivergent #community #hypermobility #constipation #parentcarer #fulltimecarer #restricteddiet #overstimulation #neurospicy #mentalhealth #mentalhealthmatters #anxiety #chronicanxiety #parentalanxiety #mentalhealthsupport
Do you know whether you are getting the right amount of universal credit as a parent carer? There are four elements to consider based on your individual circumstances. These include; carer element, disabled child addition, child element and childcare element. If you need more information, you can find it by visiting our website (link in bio) . . . . . #parentcarer #universalcredit #disability #disabledchild #disabledchildren #parenting
"I realised pretty quickly that I was going to be approaching parenthood with my daughter in a very, very different way than with my son. Innately and societally, people respect my son as a child much more than they do my daughter. That was clear super, super early." These words from @caffeinated_caregivers co-host Alyssa Nutile will resonate with many who are raising both disabled and non-disabled children. Can you relate? Read more from Alyssa and her pod co-host and fellow parent carer, Erica Stearns, by skipping over to the link in our bio 💚 [ID: a mother lies on green lawn with her two children, taking a selfie of the trio smiling together.] #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness
Join me explore how we, as parents and carers, can help our children regulate emotions and behaviour during meltdowns. 💡 I've said it before and I'll say it again: meltdowns are not simply a way to get your attention... they run deeper. They're seeking connection, asking for help to address a problem they're not able to properly communicate, a way escape overwhelming situations, or due to sensory overload. Starting Monday, 29th April, join us for a 5-day virtual workshop designed for parents and carers of neurodiverse children. We'll learn to identify triggers, how to communicate effectively, navigate feelings of guilt and shame (don't worry, I get it, and it's okay!), and how to best to be their advocate. In doing so, we nurture them into living empowered and fulfilled lives! 🌟 🤝 So here's to empowering ourselves, advocating for our children, and building a supportive community together. Comment "ME" or head to the link in my profile to get access.
Introducing Bourne2Shine. A registered charity based in Bourne Lincolnshire. We offer FREE at point of access support to children with disabilities, additional needs and life limiting conditions. This support extends to family members, including siblings. Our established groups are accessible to all the family. Please keep an eye out for further groups in the near future. #disability #childrenwithdisabilities #childrenwithspecialneeds #parentcarers #parentcarer #parentcarerwellbeing #parentcarersupport #disabilitiesawareness #notalldisabilitiesarevisible #autism #adhd #epilepsy #chromesonedisorder #globaldevelopmentaldelay #asd #learningdisabilities #learningdifferences #supportforfamilies #youarenotalone #inthistogether #bourne2shine #disabilitycharity #registeredcharity #lincolnshirecharity #lincolnshire #bourne #bournelincs
No, it isn’t fair that our kids – and we, as their parents – are predisposed to challenges. But that doesn’t mean life can’t be good. Or great. Even fabulous 💚 ✍️ @melanie.dimmitt [ID: a blue post-it note with handwriting reads: 'Life isn't fair. But it can still be fabulous.] #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness
One of my new favourite places. 🌊 Hi my lovelies. It’s been a little while hasn’t it? So much has been going on in my little life lately that I’ve struggled to keep up with much of anything honestly. We’ve had some pretty big life changes too which have just knocked me for six. However, I’m so pleased to say I’ve nearly finished the unit I’ve been stressing about for a while and completed my first year. Yes, I know what you’re probably all thinking. You’ve been studying for so long and you’re only just completing the first year?! Part time studying is still difficult when you have a family, and a neurodivergent one at that. Add in all of what I have been facing this past year or two, you’d understand why it has taken me so long. But you know what, it doesn’t matter. I’m finding my feet and I’ll get there. I’m so proud to even be at this point, I have been wanting to give this up in all honestly, but I love it so much I just don’t want too. 🥺 One day at a time, one foot in front of the other. 🌼 Love Always. 🤍 . . . . #poldhucovebeach #poldhubeachcafe #landscapephotography #dabbling #beach #moodyviews #cornwall #cornish #home #exploring #familylife #neurodivergent #parentcarer #homeeducator #studentphotography #weareoca #student #lifelessons #photographer #cornwallphotographer
Another chance to hear from Sara from Smart Bright Training about what our ADHD child may be struggling with in the classroom and what this may look like in our child's behaviour. Sara looks at what simple changes can support our child, and how to communicate their needs to school staff. Book your free spot here: https://ow.ly/erSZ50RnR85 #SmartBrightTraining #ADHD #ADHDInSchool #SEND #ASD #ParentCarer #Neurodiversity #LearningDifferences #InclusiveEducation
On top of the immense physical, emotional, and logistical challenges of caring for a child with special needs, these parents often have to contend with lack of understanding and accessibility from the broader community. It’s an exhausting battle on multiple fronts - advocating for your child’s specific medical and educational requirements, while also fighting against societal ignorance and lack of inclusion. The dual role of caregiver and activist can be utterly draining. And yet, special needs parents rise to the occasion with remarkable resilience and determination. They push tirelessly to ensure their child’s unique needs are met, all while educating others and breaking down barriers. The world is slowly but surely becoming more accessible and inclusive, thanks to your relentless efforts.
📣 ANNOUNCEMENT KLAXON 😃🙌 I'm excited to announce the launch of my new podcast. 🎉 This new weekly show will share tips on parenting strategies, a bit about your legal rights, and try and prevent you losing your mind!! I'm passionate about community, and parents helping each other. And for parents who may struggle to leave the house, or are still coming to terms with their child's diagnosis, virtual spaces can be a good alternative. So if you would like a weekly sympathetic ear for your problems, search for The SEND Parents Survival Guide on all the usual podcast platforms. #sendparents #sendparent #sendparenting #sendsupport #complexneedsparent #traumainformedparent #parentmentalhealth #parentmentalhealthmatters #parentingstruggles #parentingstress #parentingstrategy #disabilityparenting #neurodivergentparenting #neurodivergentparent #neurodiversefamily #neurodiversechild #parentcarer #parentcarers #unpaidcarer #unpaidcarers #parentcarersupport #parentcarerwellbeing #parentingpodcasts #podcastersoninstagrams #podcastersoftiktok #podcastersofinsta #parentingpodcasts #parentingpodcast #disabilitypodcast
Back in stock 🌟 KayCey sleepsuits and popper vests. Available for children with additional needs from 3 years, up to adult size XXL. Choose from a range of colours and styles. Seenin.co.uk Adaptive clothing for children and adults with additional needs. #AdaptiveClothing #SpecialNeeds #ZipBack #Sleepsuits #AdditionalNeeds #Disability #ParentCarer #CarersUK #SpecialNeedsFamilies #DisabilityAwareness #SpecialNeedsParent #CerebralPalsy #DownSyndrome #MultipleSclerosis #Autism #SEN
A picture speaks a thousand words they say! ❤️ #autismawareness #autismacceptance #autism #asd #asdpathway #autismparenting #complexneeds #pda #stimming #afrid #adhdmum #adhdinwomen #adhd #neurodivergent #community #hypermobility #constipation #parentcarer #fulltimecarer #restricteddiet #overstimulation #neurospicy #mentalhealth #mentalhealthmatters #anxiety #chronicanxiety #parentalanxiety #mentalhealthsupport
It’s a bittersweet moment when your baby starts growing up. You’re so proud of all their accomplishments, but you also can’t help but feel a little sad that they’re not little children anymore💜 That’s why it’s important to hold onto the tiny moments and cherish all of the little snuggles.🫶 They grow up so fast🥹 Repost from @amummiesguidetocysticfibrosis When you decide that you’re old enough to hold your own nebuliser mask 😜 My hero 🦸 #nearly2yearsold #cfirl #lifeofacfparent #whatthecf #amummiesguidetocf #cysticfibrosistribe #medicalparent #parentcarer #cfmama #cfparent #cfmomma #thejulialyonsfoundation #cysticfibrosis #cysticfibrosisadvocate #cysticfibrosisawareness #cysticfibrosisfighter #cfwarriors #cfcantwait #theygrowupsofast #bittersweet #preciousmoments #cfstrong #cfstar #cfbaby #chronicillness #chronicillnessawareness #chronicillnesscommunity #spoonie #spoonielife #spooniecommunity
Our new t-shirt design celebrates the strength, resilience, and unwavering love of parents raising children with disabilities or chronic illnesses. This Mother’s Day, treat yourself (or the special needs mom in your life) to a one-of-a-kind gift that honors your incredible journey. Shop the collection now before they sell out!
How's your week going? Join us next Monday (29th April 2024) between 10am-12pm for Tii Hub, where you can come just as you are and spend time with other parent-carers who "get it". Book your FREE ticket here 👉 https://ow.ly/FJvz50Ri6nZ #TiiHub #ParentCarer #SEND #Pinpoint #PinpointEvents
Your mental health is precious! It’s not a luxury to take time out to invest in your mental wellbeing, it’s a necessity. Life can be really hard, especially when you are having to deal with so much more than you could ever have anticipated as a parent. Feeling overwhelmed, confused, upset, angry.. it’s all really understandable. It’s also really exhausting to be faced with so many intense feelings and worrying thoughts. We are here to help you get the support you need. To see if you meet our criteria for counselling and therapy please go to our website (link in bio) and apply today. It’s quick and easy and will make the world of difference. #mentalhealth #parentcarer #carer #mentalhealthmatters
Join Pinpoint for the Pinpoint SEND Conference at Burgess Hall, St Ives from 9:30am to 2:15pm on Thursday, 20th June 2024. "Immerse yourself in insightful speakers, interactive workshops, and a vibrant marketplace featuring charities and services assisting you on your parent/carer SEND journey. Choose from a variety of workshop sessions tailored to your interests and needs. Plus, enjoy a delicious lunch on Pinpoint!" Book your ticket at www.pinpoint-cambs.org.uk Don't miss this great opportunity to connect, learn, and support SEND inclusion. Come an visit us at our CamRARE stand. Hope to see you there! #PinpointConference2024 #ParentCarer #SENDConference #InclusionMatters #PinpointEvents #YouAreNotAlone
"You know how Instagram shows us random things now, from random people that we don't follow? Occasionally I get shown some parent who’s really sad because their autistic kid doesn’t get invited to parties. And I’m like, but is your child sad about that? If they are, then it’s awful, of course. You don’t ever want your child to feel excluded, but I don’t think my son has ever been that worried about not being invited to places. He doesn’t like kids his own age that much," says @pennywincer. "We do tend to impose our own ideas about what would have made us happy, and what we would have wanted. So I’m constantly trying to think, well, does he care? Does he really want that?" The author of 'Tender: The Imperfect Art of Caring' shares this and much more in her Parent Carer Collective interview. Head to the link in our bio for the full story 💚 [ID: a dark green tile with light green words reads: We do tend to impose our own ideas about what would have made us happy, and what we would have wanted. So I’m constantly trying to think, well, does my child care? Does my child really want that? Penny Wincer.] #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness
Like genuinely, it was nervous poo time 🙈. 💩 I was terrified that after allllll that fighting and report filling and assessments, we’d suddenly be told they were going to take it away. That my son would have to go back to mainstream school. That they’d say at the first sign of any progress, “we’re withdrawing it”. 💩 It never happened. Well it hasn’t yet anyway and I’ve been surviving this system for over a decade. 💩 Years have rolled by. All of my children have an EHCP and we’ve survived every annual review. 💩 This system sucks. It’s “design” (for want of a better word because I’m certain no engineering went into it, it was just cobbled together on the back of a cig packet in the pub one evening 😂. Showing my age I realise as you can’t smoke in the pub these days!) does nothing but exacerbate parental anxiety. All hopes were pinned on a wretched pack of papers that don’t feel like they’re within your control. But it’s important to know, however unsteady the foundations feel, you’re going to be ok. 💩 #parentcarer #ehcp #iep #annualreview #ehcpreview
Carer’s Allowance overpayments are causing distress to families with disabled children. Contact has heard from parents who have had a small lump sum pay rise which has pushed them over the limit, so they have had to pay it back. Or they have been worried about or in some cases refused a pay rise for fear of losing their Carer’s Allowance. Contact has long campaigned for improvements to Carer’s Allowance – an increase in the weekly payment, an increase in the earnings limit and the removal of the cliff edge when a carer earns over that limit. As well as reforming the system so that carers who study or claim a pension are not penalised. Read more by following the link in our bio #carersallowance #parentcarer #parentcarers #disabledchild #disabledchildren
Today we ran part one of our Sign Language training delivered by Dr Wendy Utley. The course is based on BSL sign language and useful to anyone as who wishes to increase their communication skills and those of young people they support. The first session covers why we use signing with children with Down syndrome and the signs for manners, animals, food, family and other people, and the alphabet. The second session covers signs for the home, school day, colours, descriptions, time/days, questions and connective/link words. A book “Signing and Down syndrome”, covering the signs in this course, £7 and is an available on our website. We are able to deliver this in a school settings as well as at our office for parents and professionals so please ask if this should suit you better. To register your interest for a future courses kindly email us at [email protected] and see our webpage link for future courses https://www.downsyndromebradford.com/training #downsyndrome #BSL #Signing #signlanguage #communication #gestures #send #parentcarer #teaxher #ta #pa #inclusivity #expression #skillsforlife #nonverbal #earlydevelopment #speechandlanguage #yes #ican
I've got some big news coming up, that I am very excited about. More announcements in the next few days. #sendparents #sendsupport #complexneedsparent #parentingstruggles #parentingstruggle #disabilityparenting #disabilitysolidarity #neurodivergentparenting #neurodiversefamily #neurodiversechild #traumainformedapproach #adoptioncommunity #traumainformedcommunity #parentcarer #parentcarers #unpaidcarers #unpaidcarer #parentcarerwellbeing #parentcarersupport
Today at Ruby's sessions are: 🔴 Open play for all in the community cafe and soft play 9am -3.30pm. Sensory wind down is 2-3.30pm when we turn the lights down low. Drop in are welcome or book here if your prefer: https://www.tickettailor.com/events/rubysfund/905438 🟢 The sensory room today has availability today. Book here: https://www.tickettailor.com/events/rubysfund/905438 If you are looking support with your child who has emerging needs or diagnosis then please click here: https://www.rubysfund.co.uk/get-support/ #send #sendsupport #parentcarer #communitycafe #charity #cheshireeast #sensoryrrom #softplay #signposting #congleton
This quote perfectly encapsulates the essence of special needs parenting. While the physical and practical demands can be immense, the true power and resilience comes from the boundless love and unyielding determination of these incredible parents. Raising a child with disabilities or special needs requires navigating a complex web of medical, educational, and therapeutic challenges. It’s not for the faint of heart. And yet, special needs parents rise to the occasion every single day, driven by an unshakeable commitment to ensuring their child thrives. Their strength isn’t measured in physical prowess, but in the fierce advocacy, unparalleled patience, and inspiring creativity they demonstrate. These parents teach us all that the greatest fortitude lies not in bodily might, but in the depths of the human spirit. To all the special needs parents out there - you are true heroes. Your love and determination in the face of adversity is awe-inspiring. Keep being the fierce, compassionate champions your children need. The world is better because of you.
As part of our work with @DisabledChildrensPartnership we are supporting the @NewlifetheCharity new report, 'Fight For Our Future', which is urging the Government to make disabled children a priority. In this new report, they’re calling for a dedicated Minister for Disabled Children who will ACT: ❗️Accelerate equipment provision ❗️Cut assessment wait times ❗️Tackle staff shortages This report reveals that only 2 in 5 families feel their disabled child has all the equipment they need. Despite rising numbers of disabled children, 60% of local services have seen waiting lists grow and nearly half have spent less on equipment in the last year. Sign their petition by following the link in our bio . . . . . #ActNow #FightForOurFuture #DisabledChildren #DisabledChild #ParentCarer
How many other words have we been labelled for challenging a professionals opinion.. #parentcarer #parentblame #parenting #senmum #sendad #senparents #send #asd #adhd #neurodivergent #neurodiverse #care #parentshaming #counselling
It’s called ‘Battles’, it’s by @elizafricker_missingthemark and it hits the nail on the head for so many of us. As does everything this wildly talented illustrator, author and advocate creates. Watch this space for our interview with Eliza, coming soon! And let us know what you’re currently battling below 👇 [ID: an illustration features a mother staggering her way toward a castle that has the words ‘friends’, ‘health’. ‘books’, ‘telly’, ‘sleep’ and ‘fun’ written on it. The mother holds a flag featuring the word ‘sanity’. She’s surrounded by grey clouds featuring the words ‘equality’, ‘understand’, ‘funding’, ‘LA’, ‘school governors’, and ‘complaints’.] #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness
Little D has had an up and down week or so. Started a new medication so weaned off Trihexy as her Dr didn’t want her on 2 dystonia meds but after 2 days of being off Trihexy the Dr put D back on it alongside the new med as things only got worse coming off of the Trihexy, so now we are back on Tri but a lower dose and the new medication and the Baclofen was upped. We thought we had turned a corner as we had 3 good days but it’s quickly gone back to how she was beforehand. We see her neurologist this week so I’m hoping they have some better answers, we should also get the results from her eeg that we had done weeks ago. Last night D was unsettled from 5pm to 7.30pm then from 9pm to 3am where she then slept on me until 7am and woke up unsettled still, she had an unsettled morning until her morning meds kicked in where I also upped the trihexy (within the range I have been given by the drs so I can increase when needed without having to ask the Drs each time) which did seem to help ease things until 4pm!! #cerebralpalsyalliance #cerebralpalsybaby #cerebralpalsy #cerebralpalsykids #cerebralpalsywarrior #cerebralpalsymom #dystonia #epilepsy #sen #specialneeds #gdd #physio #solomama #solomum #specialneedsmum #hie #braininjuryawareness #parentcarer
Each month I hold an online Mindful Circle for parent carers If you have never been to a circle before you may be wondering what it involves. A circle is a place where people come together and 'hold space' for one another, for people to express their thoughts and worries, or just be somewhere without judgement or advice, to give them you full attention and to receive time in return. It is a chance to relax and recharge You will also learn some ways to relax on a regular basis Each time there is a meditation and one or two mindful techniques. I hope you will join us and create some space for yourself. . . . . . . . . . . #dancingintherain #mindful #mindfulness #selfcare #parentcarer #parent #carer #mindfulmoment #meditation #mindfulcircle #sendparents #selfcompassion
The caregivers are maybe possibly not okay 😂🤪🙃 In Ep 9 of the Caffeinated Caregivers podcast, we've dug up all the published literature we could find, sprinkled in some personal experiences, and most importantly, asked this community of caregivers how their mental health is, what effects it most, their barriers to mental health support, and one of the biggest positive impacts to caregiver mental health! This episode is going to be so relatable for all kinds of caregivers. Check out Ep 9 of Caffeinated Caregivers anywhere you get podcasts! #caregiving #disability #parentcarer #healthcare #healthtech #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #specialneeds #medicalmom #CaregiverSupport #DisabilityAwareness #DisabilityInformed #DisabiltyCommunity #Caregiver #CareCantWait #CaregiverTips #MedicallyComplex #MedicallyComplexKids #RareDisease #DisabilityParenting #CaregiverCommunity #EmpathyMatters
Sometimes if you are right in the midst of being a carer, it is worth breaking self care down into very small chunks. Looking at this graphic from selfloverainbow it can be a challenge to get past the bottom blue section. And some days, just learning to speak more kindly to yourself can make the world of difference ❤️ We are taking one new referrals for our lower cost counselling service if you are a carer based in Devon and you feel that some 1:1 counselling sessions could be beneficial. Find out more at https://www.totnescc.co.uk #carer #carers #parentcarer #parentcarers #devon #selfcare #counselljng #totnes
Last week Olivia and her two daughters were able to spend some time away together, making precious memories and having a well deserved break from routines and appointments. Olivia said “Alba is only 3 and has spent two and a half years in hospital and is palliative. We want to make as memories as possible, and this is the first one we got to make.I want to thank Harry’s Pals for making this so stress free and for giving us the opportunity to make memories that will last a lifetime. It was a much needed break. I hope that you can continue to keep helping families like mine”. If this inspires you to help then please consider donating the cost of a coffee each month (or more if you are able) so that we are able to support more families like Olivia’s. It takes seconds to set up a regular donation at www.justgiving.com/harryspals. Thank you #parentcarer #sendparenting #mentalhealth #carer #disability
DID YOU KNOW: as well as our online information, we run a free advice helpline for parents and carers in any part of the UK with a disabled child aged from birth to 25. Your child can have any kind of disability or additional need, and you do not need to have a diagnosis. We can give you advice, information and support about any concern or question you might have about the following: 📞 - getting a diagnosis and medical information - services your family might be entitled to - benefits and sources of financial help - support in the early years - special educational needs 💚 Our helpline cannot help with: 📞 - Providing legal advice. - Providing medical advice about treatments or second opinions. - Casework or representation at meetings and tribunals. - Filling in forms, checking paperwork or writing letters on your behalf. - Attending meetings at the school or with the local authority. - Providing funds or grants for items or holidays. 💙 Find out how to get in touch by following the link in our bio . . . . . #parentcarer #carers #parenting #disabledchild #disabledchildren #disability
Pause Breathe When you are a parent carer weekends are not generally relaxing. Family time, joy, laughter, time to be together, but relaxing is a lot less likely. So when Monday comes, when your kids are in school, that relief of dropping them off, the bus picking them up is felt through your whole body. Lean into this, allow yourself to feel it, it does not make you a bad parent, there is nothing to feel guilty for, we are human and allowing ourselves to feel is part of that being. So allow yourself to take the time, whatever you have, even if it's five minutes and breathe into it. Open your eyes and look around you, in the rain, breathe into the world, breathe into nature Breathe. [pic: large lush green tree that we pass on the way to school, in the rain with grey clouds behind] . . . . . . . . . . #dancingintherain #breathe #pause #nature #natureheals #parentcarer #parentcarerwellbeing #parent #carer #choseyou #prioritseyourself #selfcare #wellbeing #parentingjourney #rest #relax #calminthechaos
Currently a lot going on…. Sorry to all the folks who were hoping for a market visit over the weekend, unforeseen circumstances and all 🙏🏻 Please feel free to shop online ….. but in a week …. Someone’s going on a little holiday first 🙌🏻 😉 Miraculously we have managed to organise a little respite for ourselves, so the dad and I are jetting over to Vietnam for a short spell…. He is beyond excited, counting the days, and I am busy preparing handover notes, filling supplements, cooking in advance, reorganising Juno’s schedule and filled with trepidation…,..so many moving parts and potential calamities 😬 Nevertheless the bags are nearly packed, a new frock purchased, books chosen and maybe, just maybe, this time we will actually pull it off 🤞🏼 . . . . , . #respite #specialneedsfamily #parentalholiday #vietnam #travelgram #goa #parentcarers #parentcarer #disabilityawareness
All so often we try to change our children. Sometimes the people we need to change are ourselves. There can be so many factors at play which impact how we parent our children - they determine the way that we approach things - and they can be the factors that prevent us from being open to try new ideas. Just because parenting styles are passed down or learnt doesn't actually mean that they are the right ones to use. Looking at the list below are there any tick points that you acknowledge may have influenced your own approaches to parenting? I dare to say all four categories affected my own start to parenting and were the reasons which prevented me from following my own instincts. It has taken a lot of work to undo those factors and I still need to continue to put the work in to improve my ability to parent on intuition. Have you guys been able to free yourself (and even unlearn techniques) to make space for a more collaborative style of parenting? Or did you start better at the get go? I would love to know. This is also a theme that is woven through my next novel 𝘽𝙡𝙖𝙘𝙠 𝙍𝙖𝙞𝙣𝙗𝙤𝙬 which I hope will explain it in more detail 🖤🌈
💙💙💙 Image: Blue faded background with yellow and orange splashes and the words in white “All we can really do is love people. We can’t change them or make them do things they’re not ready to do. But we can love them. Sometimes it’s from afar, but we can always send love their way.” Vienna Pharaon . . . . . . . . . . #dancingintherain #quotes #lovequotes #positivequotes #viennapharaon #love #compassion #wellbeing #selfcare #parentcarer #parent #carer #sendparent
In the journey of parenting children with neurodivergence, like autism or intellectual disabilities, it's easy to feel overwhelmed by the unknown. Yet, amidst the uncertainties, remember this... ✨💡 "Knowledge of what is possible is the beginning of happiness." 💡✨ As parents, we hold the key to unlocking endless possibilities for our children. With the right support and belief in their potential, they can flourish and lead lives filled with joy and fulfillment. 💛 Let's embrace this truth and nurture unwavering hope in our hearts. Together, we can pave the way for our children to thrive! 🌱 Comment or DM me "THRIVING" to receive a special gift from me to you. (Don't worry. It's free. I'm not trying to sell you anything!!)
🌟 Exciting news! Peterborough City Council is hosting their Parent Carer Lived Experience drop-in session virtually via Teams! 🌟 Don't miss this chance to speak to staff and SEND officers, ask questions, be heard, and raise concerns. Book your place now for a valuable opportunity to make a difference in your community. See you there at 10am-11:30am! #ParentCarerSession #PeterboroughCityCouncil #MakeYourVoiceHeard 👪🗣️📢 #ParentCarer #PCC #LivedExperience Image Description: Rectangular image; green on the left two-thirds with text in black giving time, date and place. On the right is a photo image of game tokens in blue, red, green and yellow. Overlapping the two sides in the circular Family Voice Peterborough logo.
Fancy a relatable read? Here's a bundle of titles written by parent carers, for parent carers. Which ones have we missed? 📖 Bloom by Kelle Hampton @etst 📖 Far from the Tree by Andrew Solomon @andrewsolomon6028 📖 The Cracks that Let the Light In by Jessica Moxham @jessmoxham 📖 The Invisible Life of Us by Mandy Hose and Kate Jones @toopeaspod 📖 The Miracle of Love by Ondine Sherman @ondinesherman 📖 Raising a Rare Girl by Heather Lanier @heatherklanier 📖 Blue Sky July by Nia Wyn 📖 Unconditional Love by Jocelyn Moorhouse 📖 The Still Point of the Turning World by Emily Rapp Black @emilyrappblack 📖 Special by Melanie Dimmitt @melanie.dimmitt 📖 The Skies I'm Under by Rachel Wright @_ms_rachel_wright 📖 Tender by Penny Wincer @pennywincer [ID: A green tile features the covers of 12 books]. #book #bookstagram #disabilityfamily #disabilityfamilybooks #disabilityadvocate #caregiving #disability #parentcarer #healthcare #healthtech #caregivers #caregiver #caregiversupport #care #family #love #caregiverlife #disabilityawareness
She opened my eyes to a beautiful new view on the world 🌍 She changed my life for the better ❤️ she give me my strength back and a challenge of the biggest climb of my life but together we did it and we now life a wonderful life ❤️ I’ll always be grateful that she picked me as her mummy it’s been tuff but I would do it all again in a heartbeat ❤️ #asd #AutismSpectrumDisorder #Autism #AutismAcceptance #AutismAwareness #DifferentNotLess #Sen #Stimming #Neurodivergent #Neurodiverse #Neurodiversity #hiddendisabilities #parentcarer #fulltimecarer #restricteddiet #overstimulation #neurospicy #mentalhealth #mentalhealthmatters #anxiety #fyp #fypシ #motheranddaughter #girlsofinstgram #mummyblogger
This little boy changed everything, especially me, so grateful 🤍🌎 #autismawareness #autismacceptance #autism #asd #asdpathway #autismparenting #complexneeds #pda #stimming #afrid #adhdmum #adhdinwomen #adhd #neurodivergent #community #hypermobility #constipation #parentcarer #fulltimecarer #restricteddiet #overstimulation #neurospicy #mentalhealth #mentalhealthmatters #anxiety #chronicanxiety #parentalanxiety #mentalhealthsupport
“I think we have something really unique – a luxurious amount of appreciation for the itsy bitsy things in life, and this makes it that much better. Being able to experience that and notice that about yourself is pretty cool.” Beautiful words from our friend Effie Parks @onceuponagene.podcast, who you can see here with her sweet son, Ford. Read more from Effie in her Parent Carer Collective interview, which you can find via the link in our bio 💚 📸 @dandelions_and_dirt [ID: a young boy with blonde curly hair kisses his mum, who also has blonde hair, on the cheek while the pair snuggle together in a chair.] #caregiving #disability #parentcarer #healthcare #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness #honestparenting #SENparenting #SEN #disabilityfamily #disabilityparenting #rarediseaseparenting #rareparenting #rarecondition
Sienna you are the strongest person I know ❤️ You deserve the world 🌎 Day 4 post op and little miss is starting to feel back to her normal self! And managed to sit in a chair for a short while 🙌🏼 5 more weeks of relaxation and rest, then the hard work starts again 💪🏼 . . . . #senparentingcommunity #mumstryingtheirbest #senparentinglife #senparentingishard #disabilityawareness #cerebralpalsy #cpwarrior #limitedmobility #senmother #determinationismotivation #medicalmum #parentcarer #disabled #disability
The Ofsted Big Listen is seeking views across Ofsted's remit of work - from schools and children’s social care to teacher training and early years. The consultation closes at 11:59pm on 31 May 2024. If your work, your children, your decisions, your education, or your care are affected by what Ofsted do, then they want to hear from you. You can find out more or take part in the survey here: https://ow.ly/FMmg50QS4tq #OfstedBigListen #Ofsted #Parent #ParentCarer #EducationMatters #EarlyYears #ChildrensSocialCare #TeacherTraining #Schools
🌟 Exciting news! Peterborough City Council is hosting their Parent Carer Lived Experience drop-in session virtually via Teams! 🌟 Don't miss this chance to speak to staff and SEND officers, ask questions, be heard, and raise concerns. Book your place now for a valuable opportunity to make a difference in your community. See you there at 10am-11:30am! #ParentCarerSession #PeterboroughCityCouncil #MakeYourVoiceHeard 👪🗣️📢 #ParentCarer #PCC #LivedExperience Image Description: Rectangular image; green on the left two-thirds with text in black giving time, date and place. On the right is a photo image of game tokens in blue, red, green and yellow. Overlapping the two sides in the circular Family Voice Peterborough logo.
Find your people. Those kindred folk who fill you up, put you at ease and who you actually, really, truly, like being around. Those whom you can tell the guiltiest, dirtiest thought in your head – or simply sit with, saying diddly squat – while they just, inherently, get it. Have you found your crew of fellow parent carers? Tag them below 👇 [ID: a white tile with black handwritten words reads: 'Find your people'. A drawn heart features beneath the words.] #caregiving #disability #parentcarer #healthcare #care #caregivers #caregiver #caregiversupport #family #love #caregiverlife #disabilityawareness #honestparenting #SENparenting #SEN #disabilityfamily #disabilityparenting
On Monday we asked parent carers to share tips & tricks that they thought other parent carers should know, and we had a wonderful and overwhelming response. Here's one of our favourites from Talia, a parent carer: "Short break/social worker assessments for respite. Its a slog but worth it when it all lines up." We have more information about carer's assessments and how you can access one on our website (link in bio) . . . . . #parentcarer #parentcarers #disabledchild #carersassessment #carer #disability
When we took this photo we were happy, enjoying a lovely walk together. But when I look back on it, I feel guilty. Esmae was at respite, and although she was having a great time, we should have been on a walk as a family. But family walks are hard. Esmae doesn't love her buggy, and it's impossible to take her for a walk in the woods. We are looking into a carrier, but with her legs being so tight, that's tricky, too. So for now we enjoy life. Sometimes together, sometimes separate. #parentcarer #disabilityawareness #mumguilt Life with a disability | Parent Carer | Mum Guilt
Thought I'd give you a little laugh today… Earlier this week my car was getting collected to be repaired (two months after someone drove into the back of us but that is a whole other story … or two… and not very funny) so I had to empty everything out of it. After dodging the vast quantities of rain we've had this week to get all the random stuff and excessive amounts of rubbish that seems to collect itself in cars, I just had the car seat left to get out. Obviously it's one of those overly complicated isofix, five point malarkeys and the isofix connectors weren't playing ball, so I had this great idea to shut the door while I sorted it … with me inside … well obviously I have the child locks on the doors … not something I thought of BEFORE I shut the door … Anyway, after a little panic … followed by a very inelegant climb/ scramble/ flop into the front of the car I got the car seat out … who knows what the neighbours thought … I mean I didn't think it was very funny at the time … But a life without a few funny stories wouldn't be very interesting would it? . . . . . . . . . . #dancingintherain #funnystory #laugh #selfawareness #selfcare #wellbeing #wellness #parentcarer #parent #carer #carseat #senparenting #sendfamilies #senblogger
Coffee and Chat in Market Drayton at the Hideout, today from 11.30am. Our reps will be on hand to offer information and support on all things SEND. #SEND #CoffeeandChat #ParentCarer
Mythbusters - SEND transport can be a minefield to navigate. For those aged under 5 and over 16, there is currently no statutory offer. Each local area can offer whatever they feel is most suitable, such as a personal transport budget or possibly no transport at all. But the law that describes eligibility for SEND transport does make it clear how they should apply an offer if they choose to make one. It also covers those aged 5-16. We developed these mythbusters to help families quickly respond to their concerns and challenge where decisions may be made without due considerations of the legal entitlement. #SEND #Transport #Disability #ParentCarer #participation #coproduction #PreparationForAdulthood #mythbuster
Today at Ruby's sessions are: 🔴 Open play for all in the community cafe and soft play 9am -3.30pm. Sensory wind down is 2-3.30pm when we turn the lights down low. Drop in or book here: https://www.tickettailor.com/events/rubysfund/905438 🟢 The sensory room today has availability today. Book here: https://www.tickettailor.com/events/rubysfund/905438 If you are looking support with your child who has emerging needs or diagnosis then please click here: https://www.rubysfund.co.uk/get-support/ #send #sendsupport #parentcarer #communitycafe #charity #cheshireeast #sensoryrrom #softplay #signposting #congleton
Want to know more about what we do and how we do it? We are a charity run by Parent Carers of children and young people with SEND. We champion the voice of parent carers across Shropshire to inform and influence Change to improve the care and support we all experience. We provide community support through our training workshops, conferences, and activity and peer support sessions. We ensure families are well informed by offering information and support to understand what we should expect from the care and support available to us. Our Parent Carer Representatives meet with system leaders and service managers / staff regularly to ensure they know what our community want and need from them to help make their families thrive in Shropshire Take a look at our link in bio or highlight reels to see more about what we do and how we do it. #ParentCarer #parentcarerforum #coproduction #influenceandchange #communitysupport #informationprovision #Shropshire
🌟 Exciting news! Peterborough City Council is hosting their Parent Carer Lived Experience drop-in session virtually via Teams! 🌟 Don't miss this chance to speak to staff and SEND officers, ask questions, be heard, and raise concerns. Book your place now for a valuable opportunity to make a difference in your community. See you there at 10am-11:30am! #ParentCarerSession #PeterboroughCityCouncil #MakeYourVoiceHeard 👪🗣️📢 #ParentCarer #PCC #LivedExperience Image Description: Rectangular image; green on the left two-thirds with text in black giving time, date and place. On the right is a photo image of game tokens in blue, red, green and yellow. Overlapping the two sides in the circular Family Voice Peterborough logo.
We are seeking an Administrative Whizz to join our team and keep us all in check. If you have what it takes to work in an organisation trying to change the world for our children and others, take a look at the link in our bio to find out how to apply. #Job #SEND #ParentCarer #Disability
🌟 Join us next week for one of our free parent/carer support workshops. Wednesday 24 April: iPad workshop 'staying safe' - to help you set controls on your child's iPad to keep them safe online. Thursday 25 April: Supporting your young person into adulthood - helping you to plan for changes to your young person's benefits as they approach adulthood. Friday 26 April: Checking your benefits online - find out how to use an easy online checker to make sure you're getting all the support you're entitled to. 👉 To book your free place on any of our workshops, head to the link in our bio. #ParentCarer #Parent #Carer #Support #Workshop #Free #Benefits #BenefitsChecker #SupportIntoAdulthood
If you are stuck on an endless waiting list for assessment, or are newly diagnosed and now have no clue what to do next, know that the power is in your hands. While professional input is important, what happens within the parent-child relationship has huge power too. So much healing and growth happens in the home, If that still feels overwhelming then check out some of my You Tube videos to get you started. Link in bio. #parentingstruggles #parentingstress #neurodiversefamily #neurodivergentchild #sendparents #sendparent #sendsupport #traumainformedparent #parentingstrategy #disabilityparenting #neurodivergentparenting #neurodiversekids #traumainformedapproach #parentcarers #parentcarer #unpaidcarer #unpaidcarers
It will ALWAYS be about how we treat other people, #animals and the #earth everything around us connected by beautiful threads Threads not everyone can see. And those threads are so ALIVE! #alive 🌈 That the colours of a #rainbow as beautiful as they are will never be seen as bright or as beautiful as the threads of #energy that connect us all. #plants #alllivingthings 🌾💞 So we can choose to #bekind to each other or not. YOU choose. Only 💖 Choose wisely because what you ARE is what you will RECIEVE. If you can imagine #static You place out your hand ✋ where energy flows from ~*^¬`;~°* all that energy *IS* will attract the power of the World to it.... That energy has #life within, your #vibe your #goodness We therefore affect everything we touch and attract #karma to us Karma isn't some Great #god who points a finger waving it at you saying "you will get what's coming to you, be sure I will make it so" 🤔😂.. Ridiculously no! Just be #mindful think of others some of the time and help when you can. It's how we #create a #betterworld to live in #helpingpeople How to create Good Energy? Well it starts with YOU Always with you. X #goodenergy Love as Always Jax #parentcarer #solecarers X 💝 #quotesdaily #writingmotivation #angelmessages #angelsquad #wordsofwisdom #theedit #editorial #globe_people #collectiveconsciousness