#horsemad Following Ellen's great progress from horse riding my family have gone horse mad. I was sent these pics of me and my brother from my auntie. Like mother like daughter 😂. . . . Something you might not know is that Ellen was named after both my granny Ellen and my husband's great granny Ellen.💞 In these pics I look the double of my granny Ellen 😍 it's the hair and the cardi!! 🤩 She was such a cute wee lady (although I'm not sure if she was ever on a horse! Maybe while on holiday in Blackpool? Not sure!) . . . Ellen was showing off her new skills last night. When @redmondkenny and @thomstergram rang and we had a video call. Ellen happily did her party trick or standing up on her own about 5 or 6 times. 😂💗 She was so pleased with herself, and so she should be!! . . . Superstar 🌟 . . . #angelmum #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #angelmanuk #progress #smallsteps #senmum
#happymothersday We planned to have a lazy weekend however when I suggested we go get some fabric for a 'project' which meant a drive to Derry we made a day of it. . . . Stopped in Letterkenny for @mcdonaldsire where Ellie told us we were having a mother's day party with chips 😂 . . . We scooted around @dunelmuk to get fabric and some bits for the house before heading bowling. . . . Bowling was class. So long since we've done it. Ellie couldn't wait for her turn. She helped carry the bowling ball and gave it a good few pushes before it actually rolled down the alley to knock down the pins. Must go again soon. It was a good workout for her. . . . Bit of an unexpected mother's day. Sometimes the best days out are the ones you hadn't planned. . . . Hope all my mummy friends and followers have had a lovely day too even if you did have a lazy one! Happy Mother's day 💗 . . . #angelmum #angelmansyndrome #angelmansyndromeireland #angelmanuk #faskuk #angelmansyndromefoundation #poddforgrid #thinksmartbox #AAC #seemeseemyaac
Another beautiful landmark - the Rock of Cashel lighting up blue for #IAD2024 what a sight! 💙🩵💙 Photo credit: Natalie Franklin #angelmansyndrome #angelmansyndromeawareness #specialneedsireland #angelmansyndromeireland #rockofcashel #tipperary @therockofcashelopw
💙🩵Happy Angelman Day! Please wear blue to raise awareness.💙🩵 #angelmanday #angelmanday2024 #angelmansyndrome #angelmansyndrome #angelmansyndromelife #AngelmanSyndromeAwareness #angelmansyndromeawareness #angelmansyndromefoundation #angelmansyndromeuk #angelmansyndrome😇 #angelmansyndromeireland #nationalangelmansyndromeday #nationalangelmanday #foundationforangelmantherapeutics
#lunchbox First day of school 2024 done. . . . I've just realised how apt Ellie's new lunch box is! . . . Giggle by @smiggle_uk 🤣🤣 . . . Angelman Syndrome parents will all be flocking to Smiggle for these now I'm sure 😀🙃. . . . #angelmansyndrome #angelmansyndromeawareness #angelmanuk #fastuk #angelmansyndromefoundation #angelmansyndromeireland
#visualscenedisplays Just off a Zoom call with Rebecca from #therapybox who we came across at the communication matters conference. I've seen and tried visual scene display apps before but never fully appreciated how they could enhance the connections that can be made through using them. We had a really interesting chat about their new app Scene and heard pro which is grounded in research from the likes of Janice Light and David McNaughton who are two big names in AAC research. . . . Looking forward to trying the scene and heard app with Ellie because I already know how much she loves looking at photos and videos of her and her friends and family. Kids are so tech savvy these days I'm sure her brother and sister will be keen to get involved too. . . . Have you tried any visual scene display apps? When do you find they work best? . . . #angelmansyndrome #angelmansyndromeireland #angelmanuk #cm2023conf #aac #assistivetechnology #connectionovercompliance
#washingday After a looong frustrating 31 months we finally have our Urzone sleep system. We have it installed on a profiling bed which can go up and down to help which has really made things a lot easier on our backs. We have it high when giving Ellie a 'freshen up' and low to enable her to get in and out with less lifting on our part. We hope that an time she will be able to climb in and out by herself safely. . . . It's washing day today and the zip on and off mattress sheet is a dream! It so simple to attach, no risk of entrapment and once washed, dries in no time at all. Especially in the nice drying weather we've had lately. . . . Our first week with this new set up hasn't been perfect. It's taken some adjustment for Ellie. As you may know one of the challenges with Angelman syndrome is sleep. So when Ellie has been waking in the night and having her wee parties in her bed she has made an awful racket 🤣🤣. The metal bed frame is obviously a lot louder than her previous bed. This new sensory experience (we think) has been responsible for making Ellie even more alert during the night and making it more difficult for her to get back off to sleep. Last night wasn't as bad so maybe she is getting used to it??? It's hard to know. . . . If you feel like your child needs a more suitable sleeping solution my advice to you is to get the ball rolling ASAP!! We were lucky that we already had a safe sleep system before we started looking into the Urzone. Trust your gut. Speak to others in a similar situation see what works for their family and get your OT to organise some trials. . . . Do any of you have a Urzone? What do you think of it? What's your favourite feature? . . . #angelmansyndrome #sleepsolutions #urzone #profilingbed #senparent #cantsleepwontsleep #angelmansyndromeireland #angelmanuk #fastuk
#youngcarer looking through photos from a trip we had last week and spotted this one. That little blondie there on the left, dressed as Jessie from #toystory , affectionately known as 'the noisy one' well she is 4 years old and already totally aware of her sisters needs. She will be starting school in just over a week. Our baby and her big sister's 'carer'. She knew as well as we did that when presented with a SNAKE to stroke Ellen would be more likely to grab and squeeze it. I didn't realise at the time of taking this photo that she mirrored the support Cath was giving Ellen in guiding her to 'stroke' and not 'grab' the snake.❤️ . . . Emily has always taken everything in her stride and we never really had to worry too much about her in terms of development. It's been a breath of fresh air to see her flourish with all her energy, sass and creativity. I'm looking forward to seeing how she adjusts to school. Hopefully she will show the same care for the others in her class, gain some really great friends and have lots of fun. . . . Ellie is lucky to have such great siblings 💗💚 . . . #angelmansyndrome #angelmansyndromeawareness #angelmanuk #angelmansyndromeireland #specialneedsmum #specialneeds #nonverbal #wespeakpodd #siblings #youngcarers @alcorns_flower_garden_centre
#raisingawareness Blown away by the support from @bluestacksnf . The Falcarragh Saturday Club turned blue today to raise awareness of Angelman Syndrome 💙. . . . Ellie and her 2 Angelman buddies Zach and Luke attend Saturday club regularly so it was lovely for their rare condition to be recognised today ahead of International Angelman Day #IAD . . . Roll on Tuesday 15th February for the official International Angelman Day when we will be celebrating all the children and adults along with their parents and carers who are affected by Angelman Syndrome. . . . Want to know more? Ask me!! There is much more to our children than you'll find on Google 🙃🙂😇 . . . #angelmansyndrome #angelmansyndromeawareness #angelmanuk #angelmansyndromeireland #fast #rarechromosomedisorder #15q
🙃🙂 being sick was the topic of conversation today on Ellen's @tobii_dynavox device. She's been sick over the last week or so but we thought she was doing better. Today at school she just wasn't herself and was upset. She told the teacher she was s s s s s sick! And she wanted to go home! Her teacher quickly added a new page to find out what was wrong and Ellen said she had a sore ear! . . . Took her to the doctor who confirmed her ear was inflamed which is a shame and she really isn't herself☹️ but I can't help but celebrate this communication!!!🎉🎉🎉😉 . . . Wee superstar ⭐ . . . #presumecompetence #ihavesomethingtosay #aac #AACdevice #everyonedeservesavoice #communicationchampions #angelmansyndromeireland #angelmansyndromeawareness #slp #slpaac #salt @safecaretech
What is a parent carer? You may have seen the poem floating about social media which lists all the things a parent carer does. Some of the items of the list are hard to imagine. The ones who really get it are other parent carers. . . . We are parent carers. Myself and Aisling met up today for coffee. Our conversations were messy and frantic as always as we celebrate successes, share struggles and plan for the future of our children 💗. These catch ups are very rare for us and there is never enough time. But I'm so glad we made the time today. It's so good to talk to someone in your shoes no matter if it's when things are going good or bad. It's good to just have that person who gets it. . . . I love the photos big bro captured as we mull over a video Aisling had captured of one of her boys, then Ellen checking out what everyone else around her was upto. . . . Look out for eachother 💖 . . . #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #parentcarer #specialneedsmum #angelmanuk #costa
#amazing Disney on Ice you did not disappoint 🎉🎉🎉 . . . Thanks @eeemsb_mccon for the best birthday gift for Ellie 💓 . . . #bestauntie #disneyonice #smilingandwaving #angelmansyndrome #angelmansyndromeawareness #sensoryseeker #thelittlemermaid #angelmansyndromeireland #angelmanuk
#sibblings mornings are always a big rush for us. Yesterday we were ahead of schedule and Ellie got to enjoy a bit of TV with her siblings before school. . . . She just loves being involved and doing what everyone else is doing. . . . We are currently trialling a tobii Dynavox device from @safecaretech and inclusion is at the forefront of my mind. The device is a lot bigger than expected ( although we did trial it in the assessment) it's heavy too. We aren't naturally reaching for the device like we would the PODD book but I'm sure that's just because it's new. We need to figure out how to make it a more natural thing to use rather than a sit down teaching moment. . . . How do you use your device making it accessible in natural moments like this? . . . #imstilllearning #AAC #AACdevice #aacuser #aactips #angelmansyndrome #angelmanuk #angelmansyndromeireland #advocate #PODD @tobii_dynavox
#independentlady My wee pudding sitting up at 13 months 💗 . . . Life now at age 7 isn't without challenges but it's certainly a lot less scary. I remember being constantly overwhelmed with worry waiting for each milestone to be met. Now I know she'll get there in her own way with a huge smile of pride on her face 💗 . . . #angelmansyndrome #angelmansyndromeawareness #newlydiagnosed #angelmansyndromeireland #angelmanuk #onwardsandupwards #progress #presumecompetence #advocate
#liveyourbestlife with a little help from a friend we found not 1 but 2 wonderful girls to support Ellie at her Irish dancing class!!! Of course Ellen after walking round in circles she went for the speaker and wasn't impressed with me taking some snaps😊🙃🙄. . . . They are still getting used to eachother but the girls have such patience and understanding I couldn't ask for more. . . . I don't think the girls know just how much this means to Ellen and ourselves (although they did see me with a wee tear in my eye at the end of the lesson🥲) this could open up so many opportunities for Ellie and it's quite appropriate really with #inclusionweek next week💕 . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #angelmanuk #specialneedsmum #specialneeds #dungloe #irishdancing #inclusion #grateful #blessed 💕
#greatweeday ☀️ summer adventure to #lurgybrackfarm delighted to see how strong Ellie was on the pony. She managed two loops with very little support ☺️ so strong after 2.5 years without the donkey sanctuary. It brought back so many great memories of our time with @donkeysanctuaryleeds 🥰 chats with friends, donkey biscuits, fun with siblings. . . . We have been talking about visiting Lurgybrack farm since we moved to Ireland and we got such a fab day for our first visit. So much to do and gorgeous weather. . . . Big thanks to our Cath for all her help. We are all shattered now- quiet day tomorrow I think 😊💤💤💤. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #bigdayout #letterkenny #summer #inclusion #farm #horseriding #tractor #carer #lowmuscletone #globaldevelopmentaldelay #complexcommunicationneeds
#music look why Ellie found in Smyth's! 🎹 She was so excited. I guess she remembered the one from Saturday club @bluestacksnf . . . We later discovered that the keyboard at the top was actually switched on so she stood up and played a wee tune🎶. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #angelmanuk #sensoryseeker #sensoryprocessing #welovemusic #livemusic #keyboard #piano
#sailing Still can't believe we did this 🥰 so much fun🐟🐠🐡🎣 . . . #angelmansyndrome #angelmansyndromeawareness #angelmanuk #angelmansyndromeireland #arranmoreisland #wespeakpodd #fishing #waterobsessed #family #memories #wearesailing #randomday
#busyday for our girl🎈⛵ . . . First time @bluestacksnf Saturday Club. She had a ball with all her new friends, the staff and volunteers. . . . As if that wasn't enough excitement for the day! . . . She had her first experience of sailing in Grampa's boat! We had a wee trial run in preparation for #floatforhope . We caught some fish then stopped off at #arranmoreisland for fish and chips from the yellow bus 🚌. . . Great week day. I think she'll sleep well tonight 🥰. . . . #angelmansyndrome #angelmansyndromeawareness #angelmanuk #angelmansyndromeireland #donegal #burtonport #arranmoreisland #sailing #waterbaby #mermaid #waterobsessed #makingmemories @alanb96
#wearespeakingPODD . . . Chilling out after dinner, Ellie and I were having lovely cuddles. I asked her is she wanted a massage. We went to body parts so that Ellie could choose where she wanted massaged. She went on to choose - head, arm and tummy. . . . Ellie has been working so hard at school. I saw a lovely video of her requesting a drink🙌🙌🙌. So proud ! . . . Ellie hasn't mastered how to accurately point yet. However she will soon let you know if you misunderstood her message 😊. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #aac #aacuser #aacforall #pamper #footmassage #complexcommunicationneeds #communicationchampions #PODD #wespeakpodd #nonverbal
#wearespeakingPODD . . . Caught I quick time lapse video of our bedtime PODD chat. More to say..it's time to..go..to bed. . . . Ellie still wearing her crimbo PJ's gifted to her by nanny Maura 🙏💗 @maura.mchugh . . . . The noisy one joining in with the modelling 😎. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #wespeakpodd #ihavesomethingtosay #aac #aacuser #nonverbal #alternativeaugmentativecommunication #complexcommunicationneeds #talk #toddlertalk #preschooltalk #salt #slt #speechandlanguage
#bankholidayweekend . . . Our friends speak PODD too! . . . Big bro had friends over to play for the first time this year! While they ate pizza they used our PODD ALD table mats to make up silly sentences😂🤣😜😆🙃. . . . These have been neglected in the bottom drawer for far too long. They are a clever tool to get everyone familiar using PODD to build sentences. They were created by fellow angel mum Tracey Campbell 💗 . . . #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #aac #aacuser #ald #complexcommunicationneeds #ihavesomethingtosay #tellmeajoke #nonverbal #speakmylanguage
#wearespeakingPODD . . . Ellie uses eyegaze a lot to show us what she wants. Today I modelled my speech and when she knew I was on the right track she tried to push the PODD away. You can see her joint attention by tapping on the pages as I talked, assisting with page turns and responses to 'book' when she looked back down at it on the floor. The tapping for Ellie can also mean 'I want' and 'hurry up' like any other child desperate for their favourite toy or snack that is out of reach. . . . Our PODD chats can look kinda messy. That's because there is a lot going on. I believe this video shows lots of progress and understanding. . . . Experts and parents always say 'Angels understand much more than they can communicate' So understanding is half the battle...the other half is creating opportunities to learn how to communicate that understanding. . . . Nonverbal doesn't mean I have nothing to say. . . . #angelmansyndrome #angelmansyndromeawareness #aac #aacuser #complexcommunicationneeds #alternativeaugmentativecommunication #alternativeaccess #modelaac #alternativevoice #ihavesomethingtosay #specialneeds #angelmanuk #angelmansyndromeireland
#walkingtoschool . . . Speaking PODD on the way to school. Uh oh...something's wrong... there was a stone in big bro's shoe 🤭 . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #AAC #aacuser #wespeakpodd #complexcommunicationneeds #alternativeaugmentativecommunication #nonverbal #different #specialneeds #SEND #quickchat
#parkdays . . . Speaking PODD at the park with her class 🥰🙌🙌🙌. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #dungloe #aac #aacawareness #aacuser #wespeakpodd #aaceverywhere #communicationchampions #complexcommunicationneeds #bestteacherever❤️
#Fergus the wolf was looking well @wild_ireland_sanctuary . Ellie and her brother and sister have been working hard to save € for their first big adventure out of lockdown. We went last year and they were so excited to go back. . . . We had loads of helpful hands with us which made it go so smoothly. Ellie walked all the way to the goats then got walking again from the bears to the park. She had us going round in circles at times☺️. Having @eeemsb_mccon , @mary.boyle.79656 and Cath with us gave all 3 kids so much more freedom to explore. The noisy one was auntie Emer's shadow 😂. . . . So sweet swing Ellie and her big bro pose together for a photo even if they were looking at a different camera😂😂 they took a wee selfie which I just adore 💕. . . . The kids absolutely loved seeing the animals the only ones we couldn't spot the Lynx. Can't wait for the next adventure 😊. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #donegal #inclusion #learningtowalk #kidsselfie #siblings #weekendadventure #outdoors #wildireland #extinct #nativetoireland
#climbeverymountain A wee change from taking the steps. Today at the park Ellie had a go at the climbing wall. It wasn't the prettiest sight but she got there and was so pleased with herself. . . . She knew to lift her left foot then right foot, just needed some guidance on how high she had to lift them. I did support her in getting up but I was surprised at how much weight she was able to push through her legs and feet herself. . . . I think we will keep trying this one. For me and my back this is much easier than the steps. The only thing is, the slide is at the opposite side 🤦🏼♀️. . . . We had Ellie's walker with us at the park too. My heart melted when her brother's friend said, "Look your sister can walk on her own!". 🥰 Love hearing from a kids perspective. He had only seen her walk with an adult or be pushed in her buggy. He sounded so pleasantly surprised 😊. . . . #angelmanuk #angelmansyndromeireland #angelmansyndromeawareness #thisgirlcan #play #park #climbingframe #inclusion #specialneeds #friends #siblings #specialneedssiblings
#cabbagepatchkids could Ellie's obsession with magazines be replaced by Grandpa's home grown cabbage? She seemed to like it😆. . . . Ellie helped pick some cabbage leaves down in the polytunnel. This was the biggest one 🙃. It made a pretty good fan before Ellie decided she had other ideas☺️. . . . Loving having the chance to have these lovely fresh flavours in our meals💚 Ellie is so interested in the different fresh leaves. Their texture, smell and how she can tear them apart. Some oven ends up in her mouth before it lands on the dinner plate👍 win win! . . . She was doing some planting of her own at school this week too. Planting sunflowers🌻 can't wait to see them grow 😍. . . . Have you been growing anything lately? . . . #angelmansyndrome #angelmanuk #angelmansyndromeireland #specialneeds #sensoryseeker #healthyeating #homegrown #polytunnel #donegal #growityourself #giantvegetables #mrbloom
#progress Dungloe wasn't named the Grey stone for nothing. Grampa and uncle Alan have been working hard getting our site ready for the rock breaker. What was bog land now has its beautiful grey stone exposed and is totally transformed. . . . It's still pretty hard to imagine how the house will look. We got the finished floor level marked out as well as the corners of the house. If I understood correctly- Enda in the high vis jacket is standing in what will be the back corner of our bedroom and the spray can is about where the front corner of Ellie's room will be. Shortly after I took this video the track broke off the digger 🤯 I'm glad the guys know what they are doing 👍! . . . Still a few tweaks to be made to the internal house plans but all in all we are good to go. It's an anxious time before you lay the first bricks. I just hope we have made all of the right decisions in terms of the layout 😬. Almost everything has be designed around allowing Ellie to be as independent as possible as she grows 🤞. . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromeireland #selfbuildireland #selfbuild #ouradaptedhome #accessiblehome #accessible #disability #digger #boyswiththeirtoys #home
#noseyparker At school pick up Miss Ellie was such a nosey parker trying to see the people in the car next to us. She had been banging on the window to get their attention🤭. She was full of giggles every time they looked round at her 😂. . . . So nosey! . . . Excited for the bank holiday...excited mostly by the idea of not needed to rush in the morning and get extra snuggles💤 Ellie loves a good long lie! . . . #angelmansyndrome #angelmansyndromeawareness #faskuk #angelmanuk #angelmansyndromeireland #friday #bankholidayweekend #lazydays #specialneeds #sensoryprocessing #socialbutterfly #complexcommunicationneeds #nonverbal #ihavesomethingtosay
#waterbaby Ellie wants all the water, on all of her body (even if I don't fit 🥴), all at the same time... It's the only way. . . . There must be another way 😂😂. We didn't get round to getting the paddling pool out so this is the closest Ellie got to a dip this weekend ☺️. . . . Hope you had a good weekend in the 🌞. . . . #angelmanuk #angelmansyndromeireland #angelmantoday #sensoryseeker #sensoryprocessing #specialneedsadvocate #specialneedsanddisabilities #complexcommunication #happygirl #sunshine #watertable #waterplay #donegalweather
#windmill We went exploring somewhere different today⛴️. Ellie was a bit under the weather yesterday so we kept her off school today just in case. We headed for Burtonport after school drop off. It was a gorgeous wee walk for the girls and I. . . . We headed for the windmill ( wind turbine is probably the more accurate name but I didn't think of that at the time 🤔). The path was winding so at some points in the walk we couldn't always see the windmill as we walked. When I asked Ellen where is was she looked around to search for it until wee saw it appear. As we got closer we could hear it make a swooshing sound. Ellie couldn't take her eyes off it. She was mesmerized. Even when it was behind us she continued to turn around to see it. . . . Before long we were at the port and saw the ferry come in. So impressive how the manoeuvre it ready to allow the drivers to disembark. . . . We bumped into some mummies from #playmatters.ie it's been so long since we've all been together that I was embarrassed not to recognise them. It's gonna be some adjustment when things do get back to normal. We'll have to get to know eachother all over again😔. I'm so ready to get back to some sort of normality 🙏🥰. . . . #angelmansyndromeireland #angelmansyndrome #angelmanuk #complexcommunicationneeds #standingwithsupport #arranmoreisland #burtonport #girls #adventure #sisters #1000hoursoutside #sensoryprocessing #sensoryseeker
#phenominal that's what you are Miss Ellie Belly💗. . . . Yes and No are coming on so well it makes the rest of us giggle😁. . . . One hand walking is going great again 🙌🙌. . . . Still loving listening to Nelly Cook DJ 🎧🎶. . . The over excited screeching however...🤔 Not so impressive 🥴... Especially in the middle of the night 🤦🏼♀️. . . . #Angelmansyndrome #angelmanuk #angelmantoday #angelmansyndromeireland #specialneedsadvocate #sensoryprocessing #sensorydiet #complexcommunicationneeds #walkingwithsupport #cantgetnosleep
#grannyshouse getting her steps in at granny's house. Up and down and up and down and round and round checking out all the rooms. . . . She always goes back to her favourite! The bathroom 😍. . . . How tall is Ellie getting!? A few people have commented on her height this week. It's now when I see her in her uniform she has definitely had a big stretch 🌱. . . . #angelmansyndromeireland #Angelmansyndrome #angelmanuk #specialneedsireland #ireland #donegal #walking #learningtowalk #walkingwithsupport #lowmuscletone #physiooftheday #physio
💡 #lightbulbmoment Ellie was sat playing with the purple voile fabric. She was lifting it up over her head then bringing it down. I kept asking her, 'Are you hiding?' because that's what we usually use for peek-a-boo. But no Ellie kept shaking her head. I didn't think she understood my question until I started filming her and realised she wasn't playing peek-a-boo she was looking for the ball. It was the ball that was hiding! . . . Clever girl! She is really coming on with her 'YES' and 'NO' head movements 👍. . . . #AAC #complexcommunication #yes #no #angelmanuk #angelmansyndromeireland #Angelmansyndrome #angelmansyndromeawareness #newlydiagnosed #neverunderestimate #multimodalcommunication #thisgirlcan #greatgirl
#beachday The sun is out but that doesn't mean it's hot! (Still can't get my head around the Irish weather which would explain why Ellie had to borrow @eeemsb_mccon jacket😁) . . . Feels like so long since I've posted on here...so long in fact it was my hubby who wanted an update🥰. . . . It's just been a busy wee time we've had. Ellie and big bro went back to school so I had the chance to focus on #thenoisyone who has been out of nursery since the first lockdown a year ago. Ellie fractured a finger and has lost her 3rd tooth 🦷🧚. . . . Among other things I've gotten hooked to #greysanatomy which is my new guilty pleasure once the kids are in bed and I don't have any evening zoom calls with @playmattersireland ! 😀🥰 Now the evenings are getting lighter I'll hopefully get out for more solo walks 🤯🚶♀️🌳 . . . I've missed checking in with my insta family 💖 give me wee a 👋 to say hi xx. . . . #angelmansyndromeireland #Angelmansyndrome #angelmanuk #FASTUK #angelmansyndromeawareness #beachdaysireland #donegalweather #donegal #family #bubble #waterobsessed #maghery
#proud as punch . She's back at school 🙌🙌. Doesn't she look chuffed with the Angelman Syndrome display! . . . Ellie is loving being back at school. It's been great to see her enjoy her time there. It's added a bit more structure to our day and taken some of the pressure off at home. It actually gave me a bit of time to get on top of some life admin ( needs to be done🤪). . . . Onwards and upwards. . . . #angelmansyndrome #angelmanuk #angelmansyndromeireland #lockdownireland #specialclass #thankyouteachers #standingframe #internationalangelmanday #rarediseaseawareness #raiseawareness
#midterm finally a couple of days off. I wasn't sure just how much of a difference it would make because I still have to find a way to entertain everyone. Fortunately today actually has felt like a bit of a break. . . . We got out for an adventure first thing after breakfast. Had a great wee chat with our neighbour. She gave us a magazine for the road😊. Then got soaked and had to rush home 🌧️. . . . The sun was shining after lunch so we headed out on the bikes and picked up a whole bag of magazines from @patriciaherald ❤️ along with some treats for the kids. So lovely 🥰. . . . We have so missed the outdoors this month! The weather has just not been in our favour! Great to get out while you can🙌. . . . #Angelmansyndrome #angelmantoday #angelmanuk #angelmansyndromeireland #donegal #lockdownireland #1000hoursoutside #tomcat #tomcattrikes #kindnessiscontagious #homeschoolholiday
#IAD2021 What a day it's been! It has been fantastic seeing my social media news feeds flooded with angels all over the world along with their friends and family celebrating Angelman Syndrome. We are so lucky with the community we have around us. . . . Ellie has some very special people in her life 💙. Ellie has been completely spoiled by her lovely teacher and the school community 🤩. . . . To raise awareness of Angelman Syndrome Ellie's teacher made this poster to display at school. Ellie's SNAs made posters and sent her special messages in her zoom lesson this morning. Her school mates have been making their own posters at home too 🎉. . . . The biggest surprise were these beautiful personalised cupcakes❤️🍰 we were all amazed when we received them from @keevaghmodonnell 💙😇 you really made today special for Ellie. Thank you so much 🥰. . . . #angelmantoday #angelmansyndromeireland #Angelmansyndrome #angelmanuk #internationalangelmanday #specialneedsadvocate #specialneedsteacher #inclusion #cakes #bestteacher #giggles_with_ellie
#😇 Happy International Angelman Day! #IAD2021 #angelmantoday #angelmansyndromeireland #angelmanuk #FASTUK
#characterisitics when you look up Angelman syndrome you'll find a whole list of common characteristics. This girl right her is Ellen (Ellie) she's my daughter and she has Angelman syndrome. She isn't a list of characteristics. . . . In the current climate when all of our metal health is a bit shaky I'm finding some of the terminology around Angelman Syndrome quite triggering. Of course they have been useful in Ellie's journey to get the support she needs and to plan for the future but she is her own person. Similar to many others but what you'll find when you get to know individuals with Angelman syndrome is just that...they are indevidual. . . . Ellie likes to chew and mouth things like her scarf in this photo, she can walk with support but if she isn't in the mood she is quite happy to sit back, relax and be pushed around in her special buggy or the Beach buggy from @donegalairport . She usually crawls around at home and loves to climb on the sofa and chill out. Her epilepsy is well controlled with medication. Her sleep is unpredictable. She is still learning to do insert puzzles and build towers. She loves water especially being in it. She hates the wind and having to wait for food. Her favourite biscuits are KitKat's and her favourite thing to watch is anything with upbeat music. How do we know this? Well she is an extremely dynamic communicator😊. . . . If you want a really good idea of what Angelman syndrome is go to the @angelmanuk website where they have some really useful videos of family members and experts talking about life with Angelman syndrome and reading materials to support someone with Angelman Syndrome. . . . #Angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #specialneedsadvocate #specialneedssister #specialneedscommunity #newlydiagnosed #internationalAngelmanday @angelmantoday @angelman_asf @cureangelman @fast.uk @angelm
#diagnosis our beautiful girl the morning she was diagnosed with Angelman syndrome. A chromosome disorder affecting chromosome 15q. She was 17 months old but our journey to diagnoses started 14month earlier when we notice a delay in her development among other things. . . . Angelman syndrome can occur in a number of ways and can affect people in slightly different ways. Ellie has the deletion type which you could say is 'lucky' because it is said to be the most predictable type but for those with deletion they are the most severely effected group. . . . Reading through the list handed to us on diagnosis day a lot made sense but the one thing that scared us the most was the chance that she could have epilepsy. Though it's well controlled at the moment it can be very unpredictable and the sign that something is wrong. . . . We went into our appointment that day thinking we could fix her but came out wondering how we could support her to be the best she could be. Since that day we have celebrated each and every one of her achievements. It brings us so much pride but above all fills us, our family, friends and community with pure Joy🎉. . . . A cure is on its way...👩🔬The science side isn't my strong point but I know my husband reads up on it. If I could change anything for those with Angelman syndrome it would be to cure their epilepsy. . . . #internationalangelmanday 15th February 2021 . . . #angelmansyndrome #angelmanuk #angelmansyndromeireland #angelmansyndromeawareness #cureangelman #FASTUK #epilepsyireland #physiotherapy #independantsitting #milestone #specialneedssister #specialneedsadvocate #specialneedsmum
#racergirl this week has been all about racing. We've watched #turbo #cars #cars2 and #cars3 ( didn't even know there was one🤷). Ellie and her siblings have been keen to get out and race on our lane. Ellie looks like she could take off on her trike her little legs go so fast! . . . We are counting down to international Angelman syndrome day which is on the 15th of February. I might share some facts about Angelman syndrome along with elements of Ellie's journey and highlight some other Angelman pages I like and learn from in the run up to the big day. Keep an eye out! . . . If you have any Angelman pages you'd recommend me to check out, just right them in the comments. I'm always looking for inspiration from our community 🤩. . . . #angelmansyndromeireland #angelmansyndrome #angelmanuk #angelmansyndromeawareness #angelmansyndromefoundation #FASTUK #cureangelman #epilepsy #tomcattrikes #specialneedsadvocate #specialneedsmum #celebratedifference #chromosome15q
#snowday❄️ love the squiggly tracks Ellie's walker leaves behind ❤️👣🙌🚶🏼♀️. . . . For those who know this walk, she made it down to the picnic bench and back to our cheeky shortcut 💪. . . . I let you into a little secret...the kids were so excited to get out that they still had PJ's on under their snow gear 🤭. . . . #angelmansyndromeireland #angelmanuk #angelmansyndromeawareness #kayewalker #walkingwithsupport #wheels #walkingframe #1000hoursoutside #everystepcounts #donegalweather #natureconnection #lockdownireland
#wespeakPODD this came up in my Facebook time line today. 4 years on and it's still one of my favourite reminders to model PODD. . . . It was so encouraging today, during Ellie's school zoom, to see her teacher modelling PODD. Ellie's body paused from all the excited bouncing and she focused on the PODD being modelled on the screen. It was so powerful to see her language being used by someone else. Ellie's brother and sister then demanded that they had a PODD book to 😂. They had to settle for sharing the mini PODD that's falling apart. . . . How lovely for Ellie to have so many people engaged and using her language at the same time💕. . . . I also had the chance to chat with Ellie's new SALT today and we are slowly coming together on the same page🙏. I dread these phone calls because I'm so passionate about Ellie's communication and I feel like often people can't see her potential when they don't know her well. But this time I found it really useful and can see what direction we are headed. . . . Have you been speaking AAC today? . . . #angelmansyndromeireland #angelmanuk #angelmansyndromeawareness #AAC #specialneedsadvocate #ihavesomethingtosay #nonverbal #communicationmatters #complexneeds #communicationforall #homeschool #zoomclassroom #weregoingonabearhunt #sensorystory
#posting Ellie has been working well with her big bro. He shows her what to do then sets the activity up for her. I use hand under hand and sometime just hand under elbow to guide her hand to post the animals. She loves to bang them on the table before feeling for the hole in the box. I'm not gonna lie, about 50% or the time she chucks them on the floor. That in itself is a skill, isn't it? Over the 10-15 mins we spend on these types of activities I can feel her initiating the movement more and more🙌. All this repetition is helping with her motor planning and in the long run will help with her use of PODD or navigating an iPad. . . . I've found her wombat chair great during this lockdown. She can sit at the table with us for meal times, with the tray she can have snacks while watching a movie with us 🍿 but most importantly for these activities it means the surface she is working on is at just the right height for her. . . . What has worked for you during homeschooling? . . . #angelmansyndromeireland #angelmansyndromeawareness #angelmansyndrome #angelmanuk #finemotorskills #motorplanning #posting #handeyecoordination #handunderhand #sen #sensoryseeker #wombatchair #specialneedsequipment #activitychair #senhomeschooling #specialneedsparent #specialneedsteacher
#playtime a well deserved playtime for these kiddo's. Ellie and big bro did brilliant with their school work. They all absolutely loved Ellie's zoom lesson with her teacher. They all got involved which I think made it even more enjoyable for Ellie🙌🙌🤩. . . . Ellie got a blister on one of her toes yesterday so today she was reluctant to walk. While her brother and sister were chasing bubbles she just stood still🤣. Then when they decided to paint she just walked to her buggy and wanted to sit down. She does make me laugh when she is so focused and knows what she wants. . . . Ellie's little sis has skipped school all together and moved straight to work experience. She is doing kitchen makeovers! What do you think? I'm wondering how it will look after the rain 😬🤔. . . . #angelmansyndrome #angelmansyndromeireland #angelmanuk #homeschooling #lockdownireland #getoutside #playmatters #1000hoursoutside
#lockdownblues I was so not feeling it today until we got outside!! We were just popping out to look at the ice on the lake and ended up on an adventure. . . . Thought Ellie would just stay in the buggy as it was freezing but she surprised me (and my back🥴) she blew my mind, did so well on the uneven ground🙌🙌. . . . Couldn't have done it without my boy Ryan💪🤩. . . . #angelmansyndromeireland #angelmansyndromeawareness #specialneedssister #specialneedsadvocate #specialneedsmum #carer #lockdownireland #donegal #adventure #1000hoursoutside
#1000hoursoutside giving this a go for 2021 ❄️😎 1,000 hours outside. It's the 4th of January and we have clocked up 12 hours outdoors. Something we can do together as a family to connect with eachother and the great outdoors. . . . We have been so lucky with the weather so far this year 😁 ! As the days get longer and the seasons change I'm sure we will find many opportunities to get outside. . . . We invested in some good waterproofs and a thermos flask to keep us warm while we are out. Even @mary.boyle.79656 got try test the tea today😎. . . . We have bumped into so many familiar faces this week while we've been out and about. It's been lovely❤️. . . . 💤💤 Ellie's sleep seems to have improved. I'm sure the fresh air has helped along with our new sleep routine and medication 💪. . . . Fancy joining us on the @1000hoursoutside challenge? . . . #angelmansyndromeireland #angelmanuk #angelmansyndromeawareness #mumof3 #hippocampus #specialneedsadvocate #specialneedsmum #donegalairport #donegal #lockdownireland #wintersun #balancebike #beachadventures
#happynewyear Beautiful start to the year 🌊 can you spot Ellie and her daddy in the distance. Big thanks again to @donegalairport for the beach buggy☺️. . . . Today was the day of the big plunge for @gemmas_legacy_of_hope ❤️have you even taken part in a New Year swim? I wasn't brave enough this year but will be contributing to their fundraising efforts. They are fundraising to facilitate an affordable local counselling service. It's much needed in our area, even more so after the year we've had. . . . I had counseling this year when I hit a low point in the summer. I was fortunate enough to be in a position to go private. I had been put on an HSE waiting list to then be told they weren't taking any more referrals due to capacity and the counsellors being burnt out. The counselling was tough and I didn't really know what to expect. It gave me tools to use when things get hard again. The biggest thing I learnt was self-care. I'd say I still don't do it enough but I do try. . . . This too shall pass and I'm sure I'm not alone in looking forward to seeing friends and family without any restrictions to think about. . . . #goodriddens2020 #bringon2021 #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #nofilter #lockdownireland #donegal #carrickfinnbeach
#blowingoffthecobwebs with Granny Mary today. Getting the steps in and enjoying the winter sun 🌅😎❄️. . . . @mary.boyle.79656 #kayewalker #angelmansyndromeireland #angelmansyndrome #christmaswalk #lockdownireland #freshair #connectingwithnature #balancebike
#sensoryseeker after a few days of movies, munchies and bath bombs on repeat we decided it was time to have a proper post Christmas day tidy up. We cleared enough space for Ellie to do some touring around in her walker. Surprise surprise look where she ended up...at the sink. No, not to do the dishes! To play 😂. . . . She got lots of her favourite things for Christmas including 4 bubble machines and 2 bath lights 🤩. So she had a disco at the sink with bubbles. . . . A peaceful sleep is still a work in progress but at least for now we are in no rush in the mornings. . . . We've been avoiding the news but I gather that sadly a majority of us are back in some sort of lockdown again. I hope you are all keeping well and looking after yourselves ❤️. . . . #angelmansyndrome #angelmanuk #angelmansyndromeireland #specialneedsadvocate #specialneedsmum #mumof3 #sensoryplay #waterplay #independence #kayewalker #bubblemachine #discolights #lockdownireland
#teacherselfie so grateful for this lady and all the team in Ellie's class. This hadn't been an easy term. They have made many sacrifices as have so many front line workers. They have still managed to get the best out of our children and show care and compassion. . . . Last week Ellie's teacher came to see me at home time to talk about how off form she had been. I ended up in tears due to the exhaustion and worry of Ellie's broken sleep and her being so upset. Constantly trying to problem solve. With a little help from melatonin and a reshuffle of our bedtime routine this week when her teacher came to see me I had tears of joy. The changed we had made meant she managed to have a brilliant day at school and was getting back to her bubbly self again. What a relief! . . . I'm so glad Ellie has school staff who care so much for her wellbeing and support us as parents too do what's right for her. . . . We still have a way to go to getting Ellie back on top form but finally we are moving in the right direction. Just at the right time too with the Christmas holidays 🎄🎅☃️. . . . Wishing all the teachers (especially @keevaghmodonnell and her SNAs ) a wonderful, peaceful Christmas with your families. You desrve it❤️. . . . #angelmansyndromeawareness #angelmansyndrome #angelmansyndromeireland #specialneedsmum #specialneeds #sleepdeprivation #melatonin #whoneedssleep #bedtimeroutine #bedtimestory #grateful #gratitude #teachersofinstagram #teacher #SNA #bestteacher
#climbing fresh air and a play at the park to stop this sleepyhead from dosing off before bedtime. . . . I have so many photos like this ➡️ (swipe) on my phone at the moment. Ellie's sleep has been upside down since was ill a few weeks ago. . . . I'm well jealous of Ellie's festive wardrobe especially this coat which was preloved ❤️🎄🎅. . . . #angelmanparents #angelmansyndromeireland #angelmansyndromeawareness #angelmansyndrome #sleepdeprivation #sleepissues #selfcare #nonapping #nomorenaps #bedtimeroutine #wintercoat #prelovedfashion #handmedowns
#happyfriday what a week! Pleased to say Ellie is well and truly on the mend. Loving food again and finding joy in exploring all the things she loves again.❤️. . . . We still have some much needed rest to catch up on so the only plans this weekend are decorating the Christmas tree 🎄. . . . Thanks for all your well wishes, candles being lit and prayers from here to Oz ❤️. . . . Have a good one xx . . . #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #nonverbal #globaldevelopmentaldelay #thankyouhse #HSE #letterkennyuniversityhospital #getwellsoon #bestgirl #blessedforthismess
#getwellsoon we've been a bit quiet on here the last few weeks. Ellie hasn't been her happy joyful self lately and over the weekend she went down hill. . . . She went into hospital on Monday and almost got sent straight home. I insisted that there was definitely something not right and sure enough in the middle of the night she got really sick and ended up on a drop. . . . Mama! Trust your instincts! Advocate for your kids who can't advocate for themselves. . . . Ellie tapped away at her PODD app. This message was a complete fluke as she was just tapping away (all the fingers at the same time) while I spoke to the receptionist. It really made me smile though💗 . . . Thank you for all the messages to see how she was doing (sorry if I didn't get the chance to get back to you yet) and a special thanks to Ellie's class for sending a lovely surprise box full of sensory sparkles ❤️ . . . I'm off to catch up on some zzz as who knows what tomorrow will bring...probably more hugs with my girl and trying to entertain her whirlwind of a sister 💞 . . . #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #specialneedsmama #specialneedsmum #nonverbal #podd #ihavesomethingtosay #poorly #exhausted #onthemend
#mischief never leave books unattended when Ellie is near! Especially your homework😉. Pure delight on her face when she manages to snatch her brothers homework😂. . . . She had her eye on them for a while so I was poised and ready with the camera. Such a cheeky monkey 🐵. . . . #angelmansyndrome #angelmansyndromeireland #angelmanuk #angelmansyndromeawareness #sensortseeker #homeworkeater #seeingthefunnyside #blessedforthismess
#thereshegoes walking into school like a superstar☀️. . . . My favourite time of day used to be collecting Ellie from school but now it's dropping her off. A few weeks back I posted in my stories about how amazed I was that Ellie had decided she wanted to walk into school instead of going in her #swifty buggy. Well since then she has managed to keep it up most days. . . . Each little bit of independence gives her the chance to show her personality and to communicate her way rather than it always being adult led. Some days she turns around to go back to the car, if it's been raining she walks straight to the puddles and her favourite thing is to have a nosey in the junior infants classroom💗(what can I say she is a social butterfly 🦋). . . . She is full of surprises and we just couldn't be prouder❤️ . . . #angelmansyndromeireland #angelmansyndromeawareness #angelmanuk #specialneedsadvocate #kayewalker #learnigtowalk #everystepcounts #independence #independentwalking #thisgirlcan #shecandoit #grateful #positivevibes #specialneedsmum
#alwaysapleasure what a gorgeous day for the beach☀️ . . . Thanks to @donegalairport for use of their #hippocampus beach wheelchair. The staff are so good and always make sure it's in good condition for Ellie to use. . . . #donegal is definitely growing on me 🥰🥰🇮🇪. . . . #anglemanuk #angelmansyndromeireland #angelmansyndromeawareness #wildatlanticway #family #mumof3 #specialneedsparent #relocate #lockdownireland #nofilterneeded #beachadventures
#seizurefree 🙌🙌 . . . We had a virtual #neurology appointment today with #templestreetchildrenshospital . It was short (6 minutes) and very sweet! . . . The consultant was happy to hear Ellie has had less than 5 seizures in the last 6 months and she has been seizure free for 3 months💗 . . . Because of this Ellie has been able to progress in all areas of her development and hasn't gone backwards at all💗 . . . At the end of the call I said 'That must've been an easy call for you!' The consultant's response was 'Its always good to hear when a patient is seizure free and they can get on and progress without disruption.' YUP! It sure is 💗🥳 . . . Onwards and upwards Ellie Bellie! . . . #angelmansyndromeireland #angelmansyndromeawareness #angelmanuk #epilepsyireland #epilepsy #epilepsyawareness #specialneedsadvocate #specialneedsmum #happymum #wellchuffed
#AACawarenessmonth with only days to go until the end of the month dedicated to promoting awareness of AAC we have our AAC mojo back! I say WE because it's not just down to ME to use AAC with Ellie. . . . The whole family are using it again ☺️. All it took was a few ideas to click into place and some motivation from other Angelman mum's here in Ireland as well as afar! @rodoula_papas @the.aac.coach @iamsarahrivard 💗. Sarah suggested creating opportunities and invitations to AAC. I, along with many of you who have been in touch with me, had lost motivation and headspace to use AAC throughout the day. Struggling to see how it could fit back into our lives that didn't make it feel like a 'chore'. . . . So what did WE do differently this week? We used PODD when doing shared reading with Peppa pig books which lead naturally to chatting about all sorts of animals with Daddy. We used PODD when watching videos of others reading books @playmatters.ie @petethecatofficial and @officialericcarle . The noisy one played mummy's and daddy's while carrying around PODD. We got the ALDs out for messy play and we just generally had PODD close by to create opportunities and invitations for chat. . . . I really hope we continue with this when the kids go back to school next week. There's been a change in our energy around communicating with Ellie which is good for all of us💗. . . . #angelmanuk #angelmansyndromeireland #angelmansyndromeawareness #FASTUK #multimodalcommunication #nonverbal #presumecompetence #AAC #findyourtribe #specialneedsparent #specialneedsmum #empowereachother
Imagine if our neck is struck on one side and it is hard to move it around. It gives goosebumps!!! We do not realise that it can be a condition the child is suffering from Torticollis. The top of the head generally tilts to one side while the chin tilts to the other side. It can be inherited and is seen soon after birth. Sleeping in an awkward position or injury to the neck muscle at the time of birth can be cause of torticollis. It us advisable to consult an orthopedic or a physiotherapists to give you better guidance. Contact at 9594152602 for more details on Pediatric Rehabilitation programs. @sumanchopra_2 @babyscastle @gauribatra56 @dr.priyanka.b . . . #angelmansyndrome #angelmansyndromeawareness #angelmansyndromefoundation #angelmansyndromelife #angelmansyndromewalk #angelmansyndromecollectionsshowcase #angelmansyndromeireland #angelmansyndrome😇 #pediatricsurgery #pediatricslp #pediatricspeechtherapy #pediatricsurgeon #pediatricstrokesurvivor #pediatricstroke #pediatricstrokewarrior #pediatricstrokeawareness #pediatricsurgerylife #pediatricsbydranand #pediatricsurgeons #pediatricsnurse #physiotherapy_world #physiotherapyday #physiotherapystudent #physiotherapy #physiotherapy_centre #physiotherapydubai #physiotherapystudents #physiotherapyclinic #physiotherapylife #physiotherapysession
We all like our children laugh and smile. But if this laugh and smile is too much along with hand flapping and delayed speech , its a red flag for Angelman Sydrome. It can cause delayed development, problems in speech and balance , intellectual disability and seizure too. The child may have trouble sucking and swallowing. They have short attention span and move from one activity to the other. It's a genetic disorder noticed when the child is 6 to 12 months old. Physical therapy, occupational therapy and communication therapy along with medications can help the child. @sumanchopra_2 @babyscastle @gauribatra56 @dr.priyanka.b . . . #angelmansyndromeawareness #angelmansyndromefoundation #angelmansyndrome #angelmansyndromelife #angelmansyndromewalk #angelmansyndromecollectionsshowcase #angelmansyndromeireland #angelmansyndrome😇 #angelmansyndrometwins #angelmansyndromephotoshoot #angelmansyndromeuk #angelmansyndromephotoproject #angelmansyndromeawarenessday #angelmansyndromesucks #angelmansyndromephotoprojecñt #pediatrics #pediatricsurgery #pediatricspeechtherapy #pediatricsurgeon #pediatricstrokesurvivor #pediatricstrokeawareness #pediatricsurgerylife #pediatricstrokewarrior #pediatricsurgeons #pediatricsnurse #pediatricsleepconsultant #pediatricsbydranand #pediatricsdentistry #pediatricservices #pediatricstrokewarriors
#inspiration look at her ❤️ out playing with her school friends ❤️ . . . Attending an advocacy workshop this evening (zooming!) with @iamsarahrivard and thinking about what's important for Ellie. I nabbed this from her because it really spoke to me. . . . "My friends can support me (that's what friends do) but don't make them my 'helper' this can create a power-over dynamic." . . . ❤️ Let them play ❤️ let them laugh ❤️ let them connect ❤️ let them support eachother ❤️ let them have fun ❤️ . . . #empowereachother #empower #friendship #anglemanuk #angelmansyndromeireland #ireland #specialneedsadvocate #specialneedsmum #onepageprofile #AAC #AACawarenessmonth #SNA #inclusion #mainstreemschool #specialclass
#singalong Ellie loves a bit of music after school. In fact she loves music any time of day. I'm a big fan of car karaoke and singing along to pretty much anything going🤣. . . . Singing and child development popped up in conversation with my #playmatters buddies the other week. It got me thinking...where did my love for singing come from? . . . Both my parents enjoy a good sing song, especially my dad who plays a number of instruments. At highschool I joined to school choir, I wouldn't say I was a good singer in fact I didn't really know which part I was meant to sing most of the time. I think in reality I just joined so I'd have something to do at lunchtime ☺️. In my teens I just loved singing along to whatever my friends were playing in their cars while we drove around aimlessly (usually Mariah Carey or dance music). . . . It wasn't until I had Ellie that I really understood the benefits of singing. early in our journey I was introduced to @sarb_gian. Most of our initial conversation is a blur now but what still sticks in my mind was when she told me to sing. Sing getting Ellie dressed, sing getting in the car, sing making the dinner, sing hanging up the clothes, sing sing sing. So I did and I still do. . . . It can be kinda lonely caring for a nonverbal child. Sometimes when Ellie was very young I felt the house was so quiet during the day. I would chat, tell her the names of things she was playing with and what she was eating. Singing raised my mood and raised the energy in the room. Singing about what we were doing or nursery rhymes or singing songs I loved. It made the days much more enjoyable and fun. . . . Aside from improving my mood it helped build a connection with Ellie. She would respond to my voice more and the movements I made as I was more animated. She would perk up when it was a song she liked or was familiar with and before long the song for bath time would be a que for her and she would anticipate her favourite time of day.In time singing also supports language development which leads to reading skills and writing skills. . . . So thanks Sarb so highlighting this to me at such and early stage and helping me see the value in singing 🎶
#simplefun Ellie had so much fun with this plastic box. She kept hiding and laughing her head off. She showed great understanding because she laughed harder when we said 'where is Ellen?'. . . . It isn't even a toy and it had her going for well over an hour! Good old peekaboo ☺️. . . . We all had a good giggle with her 💕. . . . #angelmansyndromeireland #angelmansyndromeawareness #angelmanuk #FASTUK #sensorydiet #sensoryseeker #giggles #toythatsnotatoy #peekaboo #sensorytoys
#stretchingthelegs Big walking today between Cruit Island and Kincasslagh. The sand was too soft to push Ellie's buggy so we got her out and walked her across the strand. She was quite happy with that decision...she wasn't so happy about being sat on a rock for a photo though! . . . This gorgeous weather certainly makes lockdown a bit easier. . . . #anglemansyndrome #angelmansyndromeireland #lowmuscletone #globaldevelopmentaldelay #swiftybuggy #bundlebean #belcruit #donegal #staycation #wearamask #washyourhands #lockdownireland
#lookingonthebrightside☀️ after a few days off school Ellie headed back today. She had lots of great feedback from her teacher about how strong and attentive she was on her return. Ellie's seizures increased last week which we put down to tiredness. Being back at school had tired her out! A few days cuddling and raving on the sofa and she is back to herself again 🙌🙌. . . . We took the opportunity, while only having the noisy one, to get out for a big walk. It was so freeing after being on seizure watch. . . . So we are grateful for the countryside around us, for school staying open and safe, for all that we have, for family, for friendship, for zoom and for a break from the rain☀️! . . . What are you grateful for today? . . . #angelmanuk #angelmansyndromeireland #angelmansyndromeawareness #lockdownireland #specialneedsparent #stayingpositive #wearamask #washyourhands #staysafe #epilepsy #epilepsyireland
#celebrating 2 full weeks of school🥳🎉. . . . This calls for an after school disco with Nelly Cook and @officialfatboyslim 🎶. . . . #angelmansyndrome #angelmansyndromeireland #angelmansyndromeawareness #angelmanuk #postlockdownlife #backtoschool #smile #happythoughts #wegotthis #thisgirlcan #specialneeds #stayingwell #stayingpositive
#woopwoop so much excitement in our house this morning. Ellie knew exactly what was going on. She was squealing with excitement 😁. She was the same when I picked her up at the end of the day too 🥳. . . . Such a weight lifted off our shoulders. 🤞all goes well and everyone stays safe💖. . . . The noisy one is stuck with me a bit longer. There are many princess adventures to be had and puddles to be jumped in 🤩👸. . . . #anglemanuk #angelmansyndromeireland #angelmansyndromeawareness #angelmansyndrome #specialneedsmum #nonverbal #wespeakPODD #mumof3 #backtoschool #happydays