There’s So Much Happening This Spring!
It’s almost spring! If you go with the meteorological start of spring that’s Friday 1st March (also St David’s Day); or you can wait until the spring equinox on 20th March to celebrate the start of spring. Either way, the hours of daylight are getting longer and spring is coming.
The end of February and start of March is a busy time for us.
Why? Well, there are quite a few awareness and celebration days/weeks and events all happening close together. Trying to keep up with sending out relevant information from reliable sources can be a never-ending challenge – but we’re up for it!
Interested? Want to know what’s going on? Well, here we go …
Eating Disorders Awareness Week
is at the end of February/beginning of March each year, shedding light on the many eating disorders which can affect both children and adults. This year, the focus is on ARFID (Avoidant/Restrictive Food Intake Disorder). This is not as well known as some other eating disorders such as anorexia or bulimia, but it’s just as distressing and challenging for any family supporting someone with the condition.
ARFID is often associated with autism or Paediatric Acute-onset Neuropsychiatric Syndrome (PANS); but you don’t have to be autistic or have PANS to have ARFID, and not everyone with ARFID is autistic or has PANS. There are many different reasons why someone avoids or restricts food, including negative reactions to textures, taste or smells and a fear of choking or vomiting. Sadly children especially are often regarded as just being fussy eaters (so you may see the hashtag #WeAreNotFussy alongside #EDAW2024 on social media).
There is information out there – this is what we’ve found and have been sharing
- ARFID Awareness UK’s factsheet for parents explaining the condition.
- Understanding Avoidant Eating Part One: Tips and Points for parents and medical professionals.
- Understanding Avoidant Eating Part Two: Tips and Points for parents and medical professionals.
- Endeavour: BEAT’s support group for parents of children/young people aged 5 – 15 with ARFID.
- First Steps’ Parent’s Guide to ARFID (includes a link to 32 page downloadable guide).
- Conversation on Autistic Young People and Eating Disorders with Dr Elizabeth Shea (film)
Rare Disease Day
This awareness event takes place on the last day in February – this year it’s a leap year so it’s 29th February, that rarest of dates (underlining the nature of these conditions).
3.5 million people in the UK (children and adults) have a rare condition – worldwide it’s a total of 300 million! 80% of rare conditions are genetic.
A rare condition is one which affects less than 5 in 10,000 people (or 1 in 2000 people); most rare conditions are chronic, meaning they must be managed throughout a person’s life. There are currently around 7000 rare conditions and more are discovered all the time.
Some rare conditions are relatively well-known (eg: Ehlers-Danlos Syndromes, Cystic Fibrosis, Motor Neurone Disease), others are not – there may be only a handful of people known to have them worldwide; some people may never receive a diagnosis. Around 6000 children are born each year with a condition so rare that it doesn’t have a name.
Individually all these conditions are rare – but collectively they are common; 1 in 17 people will be affected by a rare condition during their lifetime.
Sometimes a child may have a rare condition which has not yet been diagnosed; even when a condition has a name, it can take a long time to get a definite diagnosis for a child. SWAN (Syndromes Without A Name) UK is a support network for families who have a child or young adult up to the age of 25 who has an undiagnosed genetic condition.
Membership of SWAN is free and there are a number of downloadable resources available, plus hints and tips for parents (guides for England are being developed). There is also information about living with a genetic, rare or undiagnosed condition, including guidance for different life stages and challenges.
Genetic Alliance UK has published a new report, Stats Behind The Stories. It examines what services and treatments are available to people with rare conditions and how care might be improved in the future. (Only 44 of the 163 most prevalent conditions are covered by NICE guidance!)
The government has also published the third England Rare Diseases Action Plan on Rare Diseases Day.
Trigger Warning: the following section is about self-injury/self-harm.
Self-injury Day/Self-Harm Awareness Day – 1st March
This has been a global event, spreading awareness and understanding of self-injury with the aim of breaking down common stereotypes around self-harm.
Again, there’s quite a bit of useful information out there about this:
- Self harm facts and advice (Internet Matters)
- LifeSIGNS, self-injury information and support network
- Parent’s guide (Young Minds)
- Understanding Self-Harm (Nip In The Bud)
- Self-harm (Stem4)
- Supporting young people who self-harm (webinar recording)
- Not All Self-harm ‘Looks’ Like Self-harm (The Mix – for under 25s)
- The truth about self-harm (Mental Health Foundation)
- Understanding Self-Harm (downloadable booklet by Scottish Action for Mental Health)
- How to talk about self-harm (Stem4)
- What should I do when I feel the urge to self-harm? (short film)
- Self-Harm: There Is Hope (International Bipolar Foundation)
- Calm harm app (free, helps to manage the urge to self-harm)
International Wheelchair Day
This has been celebrated on 1st March each year since 2008.
2024’s theme is Transforming Futures through Inclusive Innovation.
This annual event is dedicated to promoting the importance of wheelchairs for people with mobility challenges. Wheelchairs can empower people to lead independent lives. It’s also a day to promote inclusivity and accessibility in society.
Although the basic wheelchair design has stayed much the same for decades, there are some companies which have attempted to make improvements, such as Andrew Slorance’s Phoenix Instinct.
Last year, British Canoeing interviewed paralympic champion Emma Wiggs MBE about the freedom her wheelchair gives her.
National Careers Week
This is a one-week celebration of careers guidance and free resources (which are available all year); it’s taking place 4th – 9th March.
- During this week, Worcestershire Skills Show is happening on 6th March at Sixways Stadium in Worcester. It will be open to parents and young people between 5pm – 8pm; the focus is mainly on young people at Key Stages 4 and 5 (ages 14 – 18), but is also suitable for those in Key Stage 3.
It’s an opportunity to speak to employers, educational establishments and training providers. Worcestershire Apprenticeships and the Careers Worcestershire team will also be there. The event is free, so go along and get any questions you have answered by the experts!
You can find more details here: http://tinyurl.com/PVskshw24.
- The National Careers Week 2024 Virtual Careers Fair goes live on 4th March. The NCW site has a number of resources; downloadable booklets include a parents’ guide for National Careers Week, a guide to stress and inspiration for careers in hairdressing, engineering, chemistry and more! There are other resources available, though some may be in the process of being updated.
- The Skills 4 Worcestershire site has lots of varied information, including sections for parents.
- The Worcestershire Apprenticeships site has information and details of live vacancies.
- Natwest’s CareerSense site has information for different age groups from 13 to 24.
- BBC Bitesize has a careers section which may be useful to teenagers (it includes information about CVs and job applications).
- The National Careers Service has information (including details of their webchat service and free phone line).
If you (or someone in your family) want to know more about apprenticeships there’s lots of information available.
- Amazing Apprenticeships has three free webinars for Careers Week, including one about apprenticeships available with the BBC.
- There is a student apprenticeship guide here (from 2020): http://tinyurl.com/PVamagd114.
- The government website has lots of information about apprenticeships.
- Amazing Apprenticeships’ support page for parents and guardians has links to a number of resources, plus monthly parents’ packs to download (including the latest for February 2024). The packs have a range of topics.
- Amazing Apprenticeships also has an essentials guide to apprenticeships (very simple and straightforward). (Amazing Apprenticeships has a large range of resources about apprenticeships.)
- We have an article debunking apprenticeship myths on this site (from 2019 but still relevant).
- Finally, for anyone who may be interested in an apprenticeship in Worcestershire, check out the Worcestershire Apprenticeships site.
So, there’s a quick roundup of some of the topics we’ll be posting about on social media in just a few short days.
We’ve also sent most of this information in a recent email to parents. If you’d like to receive our emails, you can sign up free (we just need an email address; we’ll keep it safe and we won’t sell it to anyone).
If you like what we do and the information we share, please consider helping us gather the information and/or joining the committee – we need people to help take Parents’ Voice into future years. Email Sue for an initial (no-commitment) talk/email, leave a message or keep an eye on our Events page – we’ll be holding some informal chats in March where you can talk with current committee members to find out more (and get the honest lowdown on how they’ve found it!).
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