#22 An insight to Spinal Muscular Atrophy

When those you trust work against you, what do you do and who do you turn too ?

Getting a diagnosis of being autistic or having ADHD is not quick and it's far from simple

The support for parents of autistic children is worse, but is it improving or is it getting worse

Jolene, a parent from South Wales was diagnosed Autistic and with ADHD within the past 18 months. Her three children all have neurodiverse diagnosis but all have different experiences of this.

She talks about both hers and her childrens mental health
 She discusses battles with CAMHS and Schools
She talks about getting the right support
She talks about the need for more autistic voices

It was such a pleasure speaking to Jolene, if you want to follow her on twitter the link is below

JoSoHappy She/Her (@JoSoHappy83) / Twitter

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

This episode started with a comment on a post I made saying about the support parents give their Autistic children.

Nausheen Junaid replied - and siblings 

That was the start of this episode as it's true, parents will see it different to children. Both will see it different to the autistic person themselves. Don't get me started on the tutting person across the room who has no appreciation for peoples differences.

Nausheen tells us about her career and we talk about social media and mental health. Both of these subjects come up again later when we speak about Hassan.

We talk about hoe schools and places of support have impacted Hassan's mental health. My thoughts are a lack of training.

So why is it our autistic friends get less than us?

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

This was recorded on World Book Day, and neither me or Will mentioned this, despite being at my daughter reading in school earlier in the morning.

Will Dean is one of my favourite authors. He writes a crime series based in Sweden, where his main character is deaf. 

Will explains the inspiration for developing the character of Tuva Moodyson and how he researched her (with a lot of help from @deafgirly from Twitter).

We discuss the importance of having more positive characters with a disability as well as how the books have been received by the deaf community.

Also for the bookworms like me, we talk books, inspirations, desert island books, characters

Oh and there is an exclusive about what's next in store for Tuva Moodyson, plus an introduction to Will's next book

Please follow our podcast on your chosen platform if you like the episode and give a few of our previous episodes a listen.

When Will isn't walking Bernie, he can be found on Twitter @WillRDean

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Joining us this week is Michael Grimmett.

Michael might have Cerebral Palsy, but he is in charge of his life. Making a series of decisions along the way, some good and some, lets say not so good.

I only know the good ones though.

Michael rolls out some stories like his original transport method to work, the infamous Pizza in the rain, how he gets in to his local bar and why he doesn't know who Dave is.

There are lots of things Michael can celebrate, but he tells us a couple that aren't celebration worthy too.

I get Michaels views on UnHidden rocking London Fashion Week, Ableism in the Media and representation.

Michael can be found on LinkedIn: Michael Grimmett | LinkedIn

The challenge mentioned at the start of the show can be found using this link

In Sue's Name (insuesname.org.uk)

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Former elite athlete, Carly Tait tells her lived experience of menopause.

Now 37, Carly is post menopause. When she was  experiencing peri menopause, the help was not there for her. She was not given the advice she would have wanted.

To this day, it impacts Carly.

Carly fights for inclusion within her career role, but the advice was not there for her. Blaming it on training patterns for forthcoming international games when she questioned medical professionals who were responsible for international athletes.

This was recorded as part of an Anll4Inclusion webinar in December.

One of our commitments for this year is to get more lived experience stories like Carly's available for more people to be able to listen. To educate partners, businesses and friends.

We want people to know the experience is different for everyone and reasonable adjustments should be made in the workplace.

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Author of Through Autistic Eyes, Nicky Collins spoke at our January Disability Inclusion Networking event. I just had to share it with you all.

Nicky takes time to offer coaching to late diagnosed autistic women, using her lived experience as a late diagnosed autistic to guide and support others.

Nicky is very open about her experiences. Maybe that's the coach in her. She articulates her story telling us about her experiences on both sides of her diagnosis. You hear about other events in her life that would challenge everyone and how she has overcome them.

If you want to hear more from Nicky, her own podcast Autism UnMasked is available on most platforms.

The link to her book on her website is Through Autistic Eyes - Book (theautismcoach.co.uk)

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Imagine being diagnosed in one of the leading medical facilities in the world and the Neurologists say they have never seen this before

Enter New Jersey resident Lauren McDermott who endures the degenerative condition called Stiff Person Syndrome or SPS. A condition that is more well known now thanks to Celine Dion being diagnosed with Stiff Person Syndrome. When I say thanks, I wish that Celine Dion wouldn't have to suffer with SPS either.

Lauren goes in to great details with some of the pre cursors that may have been warning signs regarding her disability.

She talks about how disability has impacted her professionally and socially.

She tells me what someone with Stiff Person Syndrome can expect and exactly how she felt.

She explains why sun glasses are her best friend when going to doctors appointments.

Whilst one in a million suffer from Stiff Person Syndrome, we just think Lauren is one in a million

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Dyspraxia, a condition that many have heard of but don't understand or not even heard of.

That's why we wanted to speak with Rosemary Richings, author of Stumbling Through Time and Space (living life with dyspraxia) to find out how it impacts someone on a day to basis.

How can we support friends and family members with dyspraxia like Rosemary?

How can businesses be more accessible and inclusive to people like Rosemary?

What needs to change?

Check out our blog page: Blogs - All 4 Inclusion
Watch some of our highlights on our Youtube channel:  All4inclusion - YouTube

If you want to get in contact with Rosemary you can do so on this link:
rosemary_richings | Twitter, Instagram, Facebook | Linktree

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

An interview with Alex Winstanley from Happy Smiles Training CIC.

Alex is CEO and Founder of Happy Smiles, an author of children's books, Shaw Trust Power 100 representative and close friend to Hayden.

He is a great a11y for the disability community, he shares tips on how to be a great ally and who you want to align yourselves with.

(1) Alex Winstanley | LinkedIn

Inclusion and Diversity Training for Schools, Business & Community (happysmilestraining.co.uk)

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Dee Smith has Friedreichs Ataxia, one in 15,000 people worldwide.

That means there is 0.0002% of the population have Friedreichs Ataxia. 

Dee explains University life and her career as an actress and model. How she battles with those less accessible to her and gives advice to others on how to be more exclusive.

She tells a story of when she was asked to be a bridesmaid - which led to her being forced to cut off her friend due to ableism

It was great speaking to Dee and seeing her outlook on disabled life.

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.