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Tag: christmas gift ideas

Posted on November 23, 2018August 15, 2021

Practical gift ideas for sensory beings

Close up of J in her christmas PJs, playing with a small wooden toy piano

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This sketch (image 3) came up in my Facebook memor This sketch (image 3) came up in my Facebook memories this morning. There are so few options, or guidance for, inclusive playground products that this time last year I was trying to crowdsource info to try and make sure the sandpit at @shelfordplayscape was as accessible as possible, and that wheelchair users could be in the centre of play, not relegated to the side. The beautiful bespoke playground by @erectarchitecture and built by @duncanandgrove was opened in Autumn 2021 and has been a big hit, not least with EJ (photo 1 is of her in her playing at the play table in her wheelchair & photo 2 is a longer view showing the sandpit in context of the playground)! There have been lots of lessons learnt and I’d really love to see more innovation in playground guidance and design so that more public spaces can include more people, young and old! Check out @scopecharity ‘s current #LetsPlayFair campaign and their petition to help more local playgrounds become accessible to all children! #PlayForAll #InclusivePlay #AccessiblePlay #PlayTogether #MakeSpaceForGirls #PlayOpportunities #Playable #PlayValue #ShelfordPlayscape #InclusiveChic #IncludeMe #AllAbilities
Gone camping! #RareBearLife meets #VanLife in the Gone camping! #RareBearLife meets #VanLife in the #CamperWAV 🧸🚐⛺️ We spent the weekend at a small inclusive camping event run by an amazing friend for families with disabled children. A number of the families who attended met through @swanchildrenuk and therefore our children have very different conditions, but with the variety of activities on offer there was something to suit everyone! EJ got right into the boccia and loved the family disco! 😀 Our campervan is a #VWCalifornia Beach, the stripped back camper, which means it works as our day to day vehicle. Our current favoured camping set up is to have the van in dining mode (the table can easily be moved outside) and for two of us to sleep in the pop up, and two to sleep in the awning. This means it’s easy to pack up the van if we want to drive off on an outing and we can have EJ’s changing mat laid out on the air bed during the day too. #InclusiveChic #InclusiveLiving #InclusiveCamping #Campervan #FamilyCamping #LongWeekendFun
I'm delighted to have contributed a Forever Home g I'm delighted to have contributed a Forever Home guide with @Stannah_uk and their experts on how to future proof our homes as early as we can. If not for ourselves in the present time, for our older or disabled friends and family! What inclusive design tips have you found most helpful? #Stannah #KeepOnBeingYou #ForeverHome #InclusiveHome #AccesibleHome #LifetimeHomes #Adaptations #HomeAdaptations #AgeingInPlace #HomeDesign #InclusiveChic #SilverCensus
Friday 29th April is Undiagnosed Children’s Day! Friday 29th April is Undiagnosed Children’s Day! EJ was undiagnosed until she was 6.5 years old and finding @swanchildrenuk was a lifeline for us at a time when we felt lost. We are now a ‘graduate SWAN’ family and still part of the fantastically supportive undiagnosed and rare community! Show your support and help reach other lost families by joining the #PINKathon! #Undiagnosed #SWANUK #RareDisease #KAT6Asyndrome #UltraRareDisease #UltraRareConditions
It’s my 2nd Saturday in my ‘bedsit’ (bedroom It’s my 2nd Saturday in my ‘bedsit’ (bedroom), isolating from the rest of the family 😬 Day 9 and I’m still testing +ve. EJ and Mr M have remained -ve (so far) which has strengthened my faith in ventilation and mask wearing! We’ve had windows open and I’m wearing an FFP2 whenever I go into our shared spaces. Had I followed the new advice to only isolate for 5 days, I’d have exposed clinically vulnerable 11yo EJ to a preventable risk. Without access to tests I wouldn’t have known whether I was safe. It’s frightening to think there are going to be no LFTs available to the community. Even many vulnerable people will not have free access either (despite the line being that vulnerable people would still be able to get them) and it sounds like staff at special schools, with a high proportion of vulnerable kids like EJ, will no longer have access to regular testing either. Aside from the risk to health, the cost argument for stopping access to testing just doesn’t make sense to me. No testing will lead to infecting more people, some of whom will end up off work ill and some will need treatment, which will be significantly more costly to the economy than supplying tests? 🤷‍♀️
Working/schooling/gaming from home! So after 2 yea Working/schooling/gaming from home! So after 2 years in and out of shielding, covid finally got into our household. 😬 EW and I tested covid +ve last week and we mobilised the ‘Fam Morrison Covid Plan’…. EW and I upstairs and Mr M and EJ downstairs, in an attempt to keep 50% covid free (EJ in particular as she’s clinically vulnerable)…. and it seems to have worked so far! 🤞 Even after his recent vaccine, EW (8) was quite poorly with a temp and vomiting for the first few days, but thankfully he seems to have bounced back quite quickly. I’ve been having sinus symptoms, sore throat and fuzzy head. Luckily Mr M was using up some annual leave last week so we were able to keep EJ home from school, and away from her clinically vulnerable classmates. Team downstairs have been pottering in the garden (lucky with a lovely spring sunny week!), while team upstairs (EW and I) watched a lot of movies and attempted some work/home learning. My little ‘portable office’ caddy (2nd pic) has come into it’s own as I have to abandon the kitchen table! Thank crunchie for zoom and multiplayer Minecraft keeping EW occupied (with many of his friends also covid +ve and isolating at home the last few weeks). I’m so glad the kids finally had access to the 1st dose of vaccine at half term, which has hopefully taken the edge off EW’s symptoms/long lasting effects and may help prevent EJ being infected at all 🤞 I really don’t want to see more ‘restrictions’ but covid seems to be everywhere right now, and we know quite a number of children who have not been ‘ok’ with it (as the mainstream narrative goes). Without access to tests and support for people to isolate from next week I just can’t see how things won’t get worse. Clinically vulnerable people in particular are being driven further into isolation. 😢 #CovidIsNotOver #RareDisease #RareFamilies #ClinicallyVulnerableKids #TheInclusiveHome #InclusiveHome #WorkingFromHome #HomeLearning #Isolation #InclusiveChic
#LightUpForRare We don’t have a monument to ligh #LightUpForRare We don’t have a monument to light up for the global chain of light for #RareDiseaseDay today - so EJ is lighting herself up! 😀 Our sensory superstar has an ultra rare genetic condition called KAT6A Syndrome, a genetic glitch on her KAT6A gene. Cambridge University Hospitals and the East Genomic Lab Hub kindly invited us to share our #PatientJourney with them today along with @camraredisease and you can read our story in the news section of @cuh_nhs website! #ShareYourColours #RareAware #RareDisease #kat6asyndrome #kat6afoundation #Undiagnosed
This rare bear’s two human friends have both had This rare bear’s two human friends have both had their first covid vaccination! 🎉 EJ had been on the original shielding list, so our family has continued to to be cautious throughout the pandemic. This has been an especially tricky balance trying to allow the kids (EJ 11 yrs & EW 8yrs) to be kids, and do kids things whilst protecting EJ’s health, and also aiming to avoid covid ourselves to protect our ability to be able to care for her. The lower dose vaccinations for clinically vulnerable children aged 5-11 years, and children who live in the same household as people with certain conditions, were approved for use in the UK at the end of December and have only been rolled out in the last couple of weeks. It is a 2 dose course, so children in this category will not be fully vaccine protected for at least another 8 weeks. Having the vaccine protection will hopefully give us more confidence to go on more #RareBearLife adventures again! . #RareKids #RareAware #ClinicallyVulnerable #Kat6aSyndrome #Kat6Syndromes #Shielding #ShieldingFamily #ShieldingKids #Carer #FamilyCarers #YoungCarers #ParentCarers
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