A fortnightly podcast about the ludicrous realities of being a parent of neurodivergent kids. Lapsed comedian Mark Allen has three kids - two diagnosed autistic...
In response to several requests from listeners, this episode is all about the complexities of giving medication to our neurodivergent kids.
Mark speaks to the tremendous Danielle Jata-Hall, who is an author, award-winning blogger and a disability campaigner. She has three children (13, 11 and 8 - all diagnosed Autistic with a PDA profile, as well as a blend of ADHD, Anxiety and potential bipolar disorder).
Mark and Danielle discuss the medication journeys they've been on with their own kids, from overcoming their initial misgivings and dealing with the judgement of others, to the administrative nightmare of trying to get medication prescribed by medical professionals.
They compare different prescription pathways and share their experiences of the difficult process of titration - not to mention the rigamarole of actually getting their kids to take the medication we've fought so hard to get for them.
LINKS TO STUFF WE MENTION IN THIS EPISODE:
"The Journey Into S.E.N.D Fatherhood" book - https://amzn.eu/d/0qwN0il
Danielle Jata-Hall blog - https://pdaparenting.com/
Newbold Hope - https://www.newboldhope.com/
FII (Fabricated or Induced Illness) - https://www.nhs.uk/mental-health/conditions/fabricated-or-induced-illness/overview/
"The Parent's Guide to ADHD Medicines" book - https://amzn.eu/d/i2e73JM
Shared Care - https://www.england.nhs.uk/medicines-2/regional-medicines-optimisation-committees-advice/shared-care-protocols/
"I'm Not Upside Down, I'm Downside Up" book - https://amzn.eu/d/avsMxy2
"Black Rainbow" book - https://amzn.eu/d/he1Nd8K
"Steph's Two Girls" blog with tips on getting your child to take medication - https://www.stephstwogirls.co.uk/2020/01/top-tips-when-your-child-wont-take.html
"A boy less ordinary" blog - https://aboylessordinary.com/
CONTACT US
If you have any feedback about the show, ideas for topics or suggestions for neurodiversity champions you'd like us to give a shout out to, you can email: [email protected]
FOLLOW US
Instagram: www.instagram.com/neuroshambles
TikTok: www.tiktok.com/@neuroshamblespod
Facebook: www.facebook.com/Neuroshambles
Threads: www.threads.net/@neuroshambles
CREDITS
The Neuroshambles theme tune was created by Skilsel on Pixabay: https://pixabay.com/
--------
1:19:51
How far have we come? | Stephanie (from over the road)
What was it like to raise an autistic child 30 years ago? Mark has a fascinating chat with Stephanie - his wonderful neighbour from over the road, who has a 31 year old son (diagnosed autistic with moderate learning difficulties, OCD and anxiety).
They discuss how parents of autistic children were able to navigate the process of understanding how best to raise their kids, without access to the internet, social media or the breadth of information we have available now?
This is an enlightening and surprisingly uplifting episode, which shines a light on just how far society has come in a relatively short space of time, when it comes to understanding, supporting and championing our neurodivergent kids.
LINKS TO STUFF WE MENTION IN THIS EPISODE:
Disneyland, Paris - https://www.disneylandparis.com/en-gb/
Echolalia - https://en.wikipedia.org/wiki/Echolalia
The Very Hungry Caterpillar, Eric Carle - https://amzn.eu/d/boDv6wN
Rain Man - https://en.wikipedia.org/wiki/Rain_Man
The Essential Different, Simon Baron Cohen - https://amzn.eu/d/3Y5xgWv
Gentle Parenting - https://www.psychologytoday.com/gb/blog/on-babies/202405/gentle-parenting-doesnt-mean-permissive-parenting
Leonardo Da Vinci - https://www.independent.co.uk/news/health/leonardo-da-vinci-adhd-health-mona-lisa-a8927641.html
Social Stories - https://www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations
Supported Employment - https://www.base-uk.org/about/members/brighton-hove-city-council
Fare Share - https://fareshare.org.uk/
Oxfam - https://jobs.oxfam.org.uk/jobs/home/
Leonardslee Gardens - www.leonardsleegardens.co.uk/
CONTACT US
If you have any feedback about the show, ideas for topics or suggestions for neurodiversity champions you'd like us to give a shout out to, you can email: [email protected]
FOLLOW US
Instagram: www.instagram.com/neuroshambles
TikTok: www.tiktok.com/@neuroshamblespod
Facebook: www.facebook.com/Neuroshambles
Threads: www.threads.net/@neuroshambles
CREDITS
The Neuroshambles theme tune was created by Skilsel on Pixabay: https://pixabay.com/
--------
1:24:57
Coping with transport | "Belle"
Mark welcomes back former guest "Belle", as they discuss the perils of transport. "Belle" has two neurodivergent children - a 9-year old girl (diagnosed autistic with sensory processing disorder and a PDA profile), and a 7-year old boy (diagnosed autistic with Tourette Syndrome and suspected ADHD). Alongside Mark's three neurodivergent kids (with a giddy blend of autism, ADHD, anxiety and PDA), they have a trove of transport-related horror stories to tell.
As well as discussing tales of travelling on buses, planes, trains, boats and cars, there are also more Neurodiversity Champions, Tiny Epic Wins and What The Flip moments, as well a particularly insightful proposal to create a demand-avoidant sat nav.
LINKS TO STUFF WE MENTION IN THIS EPISODE:
Gatwick Airport Special Assistance - https://www.gatwickairport.com/passenger-guides/special-assistance.html
Ferry cabins (DFDS) - https://www.dfds.com/en-gb/passenger-ferries/onboard/newhaven-dieppe/sleeping
Jen Marillat, Dramatherapist - https://jenmarillat.com/
Health and Care Professions Council - https://www.hcpc-uk.org/
The British Association of Dramatherapists - https://www.badth.org.uk/
EMDR Therapy - https://www.bacp.co.uk/about-therapy/types-of-therapy/eye-movement-desensitisation-and-reprocessing-emdr
Riding For the Disabled Association (RDA) - https://rda.org.uk/
Aspens, East Sussex - https://www.aspens.org.uk/
CONTACT US
If you have any feedback about the show, ideas for topics or suggestions for neurodiversity champions you'd like us to give a shout out to, you can email: [email protected]
FOLLOW US
Instagram: www.instagram.com/neuroshambles
TikTok: www.tiktok.com/@neuroshamblespod
Facebook: www.facebook.com/Neuroshambles
Threads: www.threads.net/@neuroshambles
CREDITS
The Neuroshambles theme tune was created by Skilsel on Pixabay: https://pixabay.com/
--------
1:13:14
Judgement From Outsiders | Lisa Lloyd (@asd_with_a_g_and_t)
Mark chats to the magnificent Lisa Lloyd about the judgement they regularly receive from outsiders as parents of neurodivergent kids. Lisa has two children - an 11-year old boy (diagnosed autistic) and a 7-year old girl (diagnosed autistic, with a PDA profile) and, as a prominent content creator on social media (@asd_with_a_g_and_t), she is no stranger to being judged by people who don't have a neurodivergent child, much less a clue about how to raise one.
Mark and Lisa swap tales about comments they receive from people judging their children ("He's not autistic, he's just naughty"), judging their parenting ("He wouldn't act like that if he was my son") and judging the entire concept of neurodivergency ("It's just a label"). They discuss the misconceptions that cause people to act this way, as well as the appropriate responses you can give them in return.
This is a great one to listen to if you've ever been told that "He doesn't look autistic" or "Everyone's a bit on the spectrum".
LINKS TO STUFF WE MENTION IN THIS EPISODE:
Raising the Sen-Betweeners, Lisa Lloyd - https://amzn.eu/d/4hm6Sb0
SEND Reform England - https://www.sendreformengland.com/
Lisa Lloyd Instagram - https://www.instagram.com/asd_with_a_g_and_t/
Lisa Lloyd TikTok - https://www.tiktok.com/@asd.with.a.g.and.t
Lisa Lloyd Facebook - https://www.facebook.com/ASDwithGandT
CONTACT US
If you have any feedback about the show, ideas for topics or suggestions for neurodiversity champions you'd like us to give a shout out to, you can email: [email protected]
FOLLOW US
Instagram: www.instagram.com/neuroshambles
TikTok:https: www.tiktok.com/@neuroshamblespod
Facebook: www.facebook.com/Neuroshambles
Threads: www.threads.net/@neuroshambles
CREDITS
The Neuroshambles theme tune was created by Skilsel on Pixabay: https://pixabay.com/
--------
1:15:02
Keeping up with the Joneses | Samuel Wilson
Mark discusses the innate human desire to "keep up with the Joneses" with returning guest Samuel Wilson, who is an author and parent of two children: an 8-year old daughter (on the autism pathway, with Cerebral Palsy, Cerebral Visual Impairment and Sensory Processing Disorder) and a 5-year old son (suspected neurotypical).
They discuss how unhelpful that can be in the early days of your diagnosis journey and how liberating it is when you finally let go of the expectations of being "normal" and embrace your family in all of their neuroshambolic glory.
LINKS TO STUFF WE MENTION IN THIS EPISODE:
Simpsons clip - https://www.youtube.com/watch?v=784seqWxsMk&t=469s
Dad La Soul - https://www.dadlasoul.com/
BBC Woman’s Hour - https://www.bbc.co.uk/sounds/play/m0022ss7
India Croc replacement saga - https://www.instagram.com/p/C9hLMewpBH6/
"Lend a Hand", Samuel Wilson's book - www.littlestepspublishing.co.uk/books/lend-a-hand
CONTACT US
If you have any feedback about the show, ideas for topics or suggestions for neurodiversity champions you'd like us to give a shout out to, you can email: [email protected]
FOLLOW US
Instagram: www.instagram.com/neuroshambles
Facebook: www.facebook.com/Neuroshambles
Threads: www.threads.net/@neuroshambles
CREDITS
The Neuroshambles theme tune was created by Skilsel on Pixabay: https://pixabay.com/
A fortnightly podcast about the ludicrous realities of being a parent of neurodivergent kids. Lapsed comedian Mark Allen has three kids - two diagnosed autistic with ADHD and one highly-suspected autistic. Each episode, he swaps stories with his guests about the challenges they’ve had dealing with seemingly simple events, such as birthday parties, holidays, mealtimes, and leaving the house.
UK