My Angel | Other
My Angel
Reviews
to load big map
25.01.2022 Keeping busy Mia taking us on an adventure, leading the way
25.01.2022 Fun walk this morning
25.01.2022 More toilet paper
23.01.2022 Cooking today. Mia getting clever using her voice.
23.01.2022 This is fun, more!!
22.01.2022 Today we celebrate the life of Dr. Harry Angelman and share the history of Angelman Syndrome. Dr. Harry Angelman - August 13, 1915 - 1996.
22.01.2022 Mia is so engaged with her Girl Guides online meetings. Dress up week.
21.01.2022 Inspiration for idea of Sleepless in September Mia has always been a party queen since she was born in 2007. Still going strong 13 years later She has settled and we do have some good nights. Unfortunately her sleep is assisted with having to administer medication every night. We still havent found the one that suits her we just keep trying and what works one day sometimes doesnt work the next. A lot of her sleep issues are also behavioral aswell. Mia forces us to sleep... with one eye always opened. This is one of the studies that FAST are striving towards to help our kids. Join us this weekend for our Facebook event. Prizes can win us an extra hour sleep or if you win you can donate it. https://www.facebook.com/events/654935341782135 You can also join our team if you like https://sleeplessinseptember.gofundraise.com.au//TeamMia-4
20.01.2022 Great program delivering to schools. Mia is saying Thankyou to them for her orange
20.01.2022 #cureangelman Happy Fathers Day Poppy xx
18.01.2022 As of today Mia and I are starting our own AAC boot camp at home. Mia has always had access to communication devices Proloquo2Go , picture cards and learnt key sign language. Her receptive communication is very good and often will use gestures or signs. She does use her Talker when prompted but needs a lot of encouragement and modelling. We know she can use it and does but we need to push harder to fill in those gaps. Communication is key and is a definite trigger for beha...viour. Mia is really struggling and getting very upset with constant yelling or hitting herself. I would love for her to be able to express herself with words because she has such a huge personality that we want everyone to meet. With help of Mia’s wonderful team she has around her I’ve set up communication boards, learning a new key sign of the week, weekly schedules all to be accessible so there is no excuse for us not to have those reminders and visuals for us and Mia. Communication needs to be accessible for everyone. See more
17.01.2022 Mia doing her exercise isolation style via zoom
15.01.2022 While the unending stream of horrors against disabled people continue, and were all being affected by these wretched abuses, Im also getting frustrated by suc...h poor language by the media (and politicians) recently. Please join me in calling them out. 1. Ann-Marie was horrifically abused by her Support Worker, not a Carer. She clearly had no Carers. Carers are unpaid supports, usually family. 2. Willow did not suffer from Down syndrome. She lived with it, and suffered from an abusive and repugnant father. She was also not a tragic toddler. She was a gorgeous little girl whose life was ripped away from her. 3. The two teens malnourished and found locked in a room naked in squalor in QLD were not intellectually handicapped, though they may have had intellectual disabilities. Words do matter. They add to the devaluing of disabled people and the pity party mentality that we must end. Getting off soapbox now. Its been a horrid few weeks for so many in our community. Please get help if you need. Both Lifeline and Beyond Blue have trained volunteers available around the clock. Stay safe. Drop in on a neighbour. Call someone you havent spoken to in a while. Take care of yourself as best you can. Sam Image description: letter-tiles and pencils on a wooden surface. Some of the tiles spell out WORDS HAVE POWER. (thanks to Susan Hoffman - can't believe I forgot on this post - urgh - so so sorry!)
14.01.2022 Hands on the hips being sassy!! Teenager today, you show and share your big personality to the world. Lets take it on! Happy Birthday Mia xxx
14.01.2022 A mum has used her COVID-19 welfare bonus to purchase a jumping castle for her daughter Ivy, who lives with Angelman syndrome. More here: https://ab.co/3aYrRt7
13.01.2022 Mia is getting use to using Zoom sessions for therapy and catching up for her Girl guides meeting. Im amazed how well shes adapted to it. Tonight she sat so still watching all of the girls on the screen. It was about introducing your pets. Mia used her talker for everyone to meet Brewster and Gus. Both the dogs came inside and she gave them a treat.
13.01.2022 So my crazy husband decided that he would go for a swim in 4degree weather so he could raise money for FAST Australia. He raised $600 very quickly, thanks to his friends daring Cigar Fusion to take the plunge. (Excuse the language ) See link below in comments if you would like to donate to research for a better future for those with Angelman Syndrome.
13.01.2022 Our lovely friend has immersed herself in learning sign language to teach both her children with Angelman Syndrome a way to communicate. Big shout out to her for stepping out of her comfort zone to inspire us all. Communication is key
12.01.2022 Come up in my memories today. 2011 look at those curls
12.01.2022 FAST Australia, one of the first branches of FAST, was founded in 2010 by a group of determined and dedicated parents of children with Angelman syndrome led by ...Meagan Cross and Jennifer Kyriacou. Since its inception, FAST Australia has raised over two million dollars of which $1.5 million has been invested in research and education. A highlight of the work undertaken by FAST Australia has been the creation of the Global Angelman Syndrome Registry. Click here for the full article: https://cureangelman.org/fast-australia-building-community- Working together globally to #CureAngelman
11.01.2022 Social Hibernation for the Vulnerable Our COVID19 journey #COVID19 #angelmansyndrome #raredisease #disability #socialhibernation #socialisolation #vulnerable... #protect Welcome to social hibernation! Around our great country, the transition to social distancing and tougher restrictions for social isolation measures may result in broad social hibernation, where we dont come out for a good while. For many people this will be a new experience that is, at a minimum, disruptive, and at the extreme, may require an entire lifestyle transformation. Our discretionary social outings have ground to a halt. For the time being, there are no more lazy Sunday sessions at the local craft brew house? No more impromptu nights out at the cinema or theatre? No long dinners or house parties with friends where you while away worldly cares, heralding the end to another busy week at work. We are being asked to think carefully before going out in public, and only doing so when it is absolutely essential, and for the shortest time possible. The self-care, pamper sessions at the salon are currently a thing of the past. We are going to need to adapt and evolve and find new ways of doing things that we took for granted before. If we are lucky enough to be working from home and have school-aged children, we have also been plunged into the world of professional juggling, balancing work with being the new Principal/Teacher/Childcare worker in our make-shift school or early education facility. So, hows it going? Having fun yet? What about that sudden loss of social contact or connection? What about your sense of purpose or meaning in life? And where are all the definitive answers to what this will mean for you, your family, your job and your future? Its hard, isnt it. We know. Weve been there. There is a group in our society for whom this social hibernation, economic uncertainty, and fear of life-threatening illness has always, and will continue to be our reality pandemic or not. Who are we? We are the people living with rare diseases and intellectual disability, their families and carers. And weve been living like this for years. The concept of staying home with our loved ones, navigating a complex, challenging medical condition that is poorly understood, is par for the course for many who are living with a rare disease and intellectual disability. And yes, it can be very lonely. We have experienced first-hand how some people in your life disappear almost immediately on receipt of the news that you have a loved one with complex disabilities, while others will become absent over time. For some it is like they are afraid of catching something if not the genetic condition or disability (quite ridiculous!) then possibly your grief. They are the ones who go first. They are followed by the friends and family who try for a while but just dont understand why it is so hard for you to meet up for a drink, head out for a dinner or drop around their place for a casual family BBQ. So they just stop asking, and eventually stop checking in on you. This was already our reality; we were already at home, looking after our own business and caring for our loved ones, when the virus first surfaced in Australia. Then we watched many of you make a mad rush to the supermarket in the early stages, panicked by an illness you couldnt see, and a future that was uncertain. You bought up anything you thought you could use if the intolerable happened, and you were stuck at home, or became sick. At first we laughed. We were already set up for online shopping a necessity for many families for whom simply heading to the supermarket is a challenge that requires days of planning. But then you swamped the supermarket online shopping portals, and many of us were locked out of access to this important means of shopping. We were lucky that some of us were able to apply for Special Access accounts to get our groceries flowing again. But not everyone qualified. Leaving them stranded. And because of your bulk buying, the supermarkets reached out to help us, but asked us to get up early and line up at 7am. We appreciated the gesture but I wonder if you thought for a second that we might not have had anyone at home to care for our person with a rare disease at that time to even make this possible? And you probably didnt realise that it can sometimes take 1-2 hours to help a person with intellectual disabilities get ready to head out of the house to go shopping, if they can cope with that experience at all. It would have been better if youd only bought what you needed at the time, and left enough for the rest of us. Instead, we have been left to find support to give us the shortest break to get to the supermarket to buy the bare essentials to keep our households going. The government has gradually put in restrictions on public and social gatherings. To be honest, we werent phased as we werent going out anyway. Many of our loved ones just cant cope with the noise, sights and smells of different places, and all of the different people! They deal with intense anxiety and can have regular meltdowns. But if we did want to go out anywhere, we were told that to make the health strategy work, our loves ones needed to comply with social distancing and hand hygiene measures, including not hugging anyone or putting their hands to their face. You probably werent aware but at this point things started to get a bit scary for us because, while many of you were still enjoying the crowded beach, or farmers markets, we wondered how on earth we could even keep our loved one safe in child care, school or adult day program, when they couldnt follow these new rules? People with rare disease and intellectual disability struggle to understand about the coronavirus and the risks, and with their complex medical conditions, are likely to be some of the most vulnerable if exposed. While the schools debate raged on, you probably didnt notice that no one mentioned people with a disability. No one at any level of government was talking about special schools, disability child care centres, or residential or day programs for people with an intellectual disability. All who would find these health measures impossible to implement. We started to get nervous. As a rare disease disability community, we were feeling forgotten and vulnerable and left to make our own risk assessments. Social distancing wasnt going to work for our families. Social hibernation was the preferred solution to protect our loved one. Before any government announcements were made, you probably hadnt noticed that many of us had already taken action and decided to keep our loved ones at home, if we could afford to. Those who couldnt were becoming increasingly anxious. Ah, but then the schools around the country were able to finish early and have started moving to online learning. We recognise that for all the families around the nation who are home-schooling for the first time, this has been a shock! Our pride and gratitude for teachers has hit a new high. The teachers have worked hard to ensure that students have videos to watch, modules to complete, online chat rooms to discuss subjects, and a range of self-directed programs to help the learner. What about for us? Many young people with intellectual disability cant navigate technology without some assistance. Some need expensive and advanced technology, integrated with specialised software, to even access computers. Many also need a learning partner to assist with all aspects of tasks. You probably didnt realise that most families dont have any of this technology, equipment or software in their own home. Without the technology, in home specialised support, and detailed instructions on how to scaffold a learner with disabilities, many of us find ourselves out of our depth, anxious and hopeless. And we are quickly coming to the realisation that our loved ones will not have access to any quality learning during this pandemic. While this has been playing out in the education sector, we knew that, just like the flu season, we needed to be ready for this virus. If our loved ones get this virus, they may get very sick. Their underlying complex medical conditions mean it could trigger life threatening seizures and pneumonia, resulting in yet another traumatic stint in hospital that we know only too well. So we started developing our Infection Control and Medical Management Plans. Now, we recognise that this virus scares many, and you may have started using gloves and wipes to sanitise your home regularly, to prevent spread of infection. But did you need to buy all the stock, in store and online, just in case? You probably didnt know that the gloves, wipes, hand sanitiser and disinfectant are part of our daily essential home equipment. They are required PPE for our support workers and carers. Without them, our loved ones are exposed to bacteria and viruses that live in the home, and they cant be protected. They cant apply the hygiene rules, cant socially distance, and may not understand about the virus and its potentially lethal implications for them. We are now no longer able to provide the quality level of care they need, or protect them in a safe and hygienic home environment. Oh, and our support workers cant do their job. Without the appropriate supplies and PPE they are not allowed to come to our home. You probably didnt realise that through your choices, many of us are now all alone in this battle, without any of the armour that normally keeps our loved ones safe, or the support workers and carers that help us on a daily basis. If you have extra stock, please donate it to a disability service or family in your neighbourhood. It will make a huge difference. But not toilet paper! You may not have known but we did - toilet paper cant kill a virus. You probably didnt know, but the free childcare that is going to be provided by the government, may not extend to the disability child care providers, because it is calculated on a funding model for typical child care. Our ratio for quality care can be one worker to one child, compared to the 15:1 ratio in traditional centres. If we need childcare or vacation care, so that people can continue to work or study, where do you suggest we go? You may not have realised that, while many of you in social hibernations are challenging yourselves to take up a new hobby, do some online training, or finally sort out the linen cupboard or shed, we are anxious, nervous, and becoming scared of what this virus may bring. We are worried about whether you are doing the right thing, staying at home, to keep our families safe? We are losing sleep as we try to plan to stay ahead of this situation and to protect our loved ones. How will our loved ones, who may be non-verbal and unable to indicated that they have a sore throat or aches and pains, tell us they are sick in time for us to get them help? And when we do, will they automatically qualify for COVID-19 testing? If we go into full lock down, will disability support workers be listed as essential workers? What if our loved one lives in a group home? Are we able to visit them or will they be left feeling anxious and forgotten? If they require hospitalisation, will a family member be allowed to stay with them? Or will they be forced to lie in a hospital bed, terrified with no understanding what is happening, and without support for their disability as the stretched health care workers help manage the virus and their other complex medical issues? Will the ethical standards that are being prepared to consider who should be treated for COVID-19 continue to uphold the Human Rights of people with a disability? You probably didnt know that these are the tough questions that the vulnerable people across Australia living with rare disease and disability are raising right now. We need to, because lives depend on the answers. We are in the thick of this pandemic, and it is likely that things will worsen before they get better. I know the planet is breathing easier, but we are holding our breath. Waiting. Praying. Hoping we all did everything we could to protect people living with rare diseases and disability. Only time will tell. We know this pandemic health crisis will pass, and hopefully we will all come through relatively healthy and unscathed. Our nation will come out the other side, and you will be able to return to your socially active, freewheeling lives, when hand sanitiser and toilet paper are aplenty, and cafes, restaurants, gyms, theatres and hair salons are bustling. And when that time comes, when you are freed from restrictions and constraints, will you remember us? Is it too much to hope that the world will have new found empathy and consideration for the most vulnerable in our society? When this is all over, will you think about us and maybe drop by to say hello? Because we could always use a hand, and would love some company. Because we will still be here - living in our social hibernation bubbles.
10.01.2022 Keeping busy at The Botanical Gardens
10.01.2022 Sharing a beautiful and original poem by the wonderful Melinda Smith: Artist, Mentor, Dancer. and public figure. Mel is an advocate for the participation, perso...nal rights and inclusion of people with significant speech and communication disabilities. Time As It Is... I say my words One by one I process my thoughts I need more time I understand you Do you understand me? Melinda Smith August 2020
10.01.2022 Mia was very EXCITED to be given her new shirt for cheerleading
07.01.2022 Did somebody say Chocolate Cake Mia rushed through to the end so she could lick the bowl.
07.01.2022 As you all know sleep or LACK of sleep has been a really big challenge for Mia. She often goes on a few hours, this in turn creates other issues throughout the day for her. Please accept this invite and join this lighthearted challenge. Join Team Mia!! Join us for the sleepless in September Challenge! Your challenge is to survive on 8hrs sleep in a 48hr period Sept 25-27. You can earn sleep hours with donations (10 donations gets you an extra hour).... Host your own sleepless event, join team Mia. https://sleeplessinseptember.gofundraise.com.au//TeamMia-4 More details @ https://sleeplessinseptember.gofundraise.com.au/ Dont feel up for the challenge you can purchase sleep hours for the Perrie household by making a donation to the page. Walk in the shoes of Angelman parents and help raise awareness and funds for AS research into a cure. #SleeplessInSeptember #CureAngelman
06.01.2022 https://www.facebook.com/events/654935341782135 Please get on board to support our Angels for Sleepless in September! One of the major impacts that affects our kids is sleep deprivation! So much support from loved ones family and friends already given. Almost raised $3K in a week either by sponsoring or donations. Join team Mia or create your own... https://sleeplessinseptember.gofundraise.com.au//TeamMia-4 Looking forward to the weekend of no sleep, which isnt unusual for us but at least we will have company through the night. Midnight chats, games. Prize will earn an extra night sleep, ahhhhhh bliss!!
06.01.2022 Trying to cook with Mia
05.01.2022 https://gf.me/u/yf27ja
05.01.2022 Feel good clip. Very powerful, live in the moment #cureangelman
04.01.2022 Mia found a fun new game
03.01.2022 This #RUOK? Day lets pause and chat with a friend or colleague. Right now, its harder than ever for us all mentally to engage with each other, and some are f...inding the physical and mental isolation a real challenge. R U OK day is a good reminder to check- in on our mates, family and friends, and ask R U OK? Learn the Key Word Signs to ask R U OK? so that you can talk to people who use #KeyWordSign to communicate. #Scopeaust For more resources visit https://www.ruok.org.au/ You can download the PDF version of the poster from our website: https://kwsa.com.au/r-u-ok-day/
02.01.2022 Best news to wake up to. Promising signs in a trial that’s being run at the moment.
02.01.2022 Its all about the Mums!!
01.01.2022 Please support FAST Australia by purchasing your Entertainment book. Research is always developing to help those with Angelman Syndrome. Click on the link below to purchase your digital copy. #cureangelman https://www.entertainmentbook.com.au/orderbooks/91z7806
