The Threads of Life

#1 Summary

As much as we love and embrace our neurodivergent children, raising them is challenging and often leaves us feeling as though we are going round in circles. An honest look at parenting my own two sons and their adhd, one being 13 and non-speaking autistic, the other 21 and at home having dropped out of uni. Sharing the woes experienced with diagnosis; impulsivity in the brain; medication; executive function; disassociation, demand avoidance.

#2 Guest n/a

#3 Time Stamps

0:00 Intro

1:25 personal family history on 3 x adhd diagnoses in my two sons and daughter.

2:16 Diagnosis and meds for a non-speaking autistic 8yr old

7:20 Separating the autism from the adhd

8:39 The 21 year old's story of adhd

10:54 The day to day woes

13:56 Executive function

17:06 Disassociation

18:31 Demand avoidance

21:04 we are both learning, I am learning to not expect a neurotypical journey and to work with who my child is and what he can actually do.

22:44 Extra time in exams whine!

#4 Main Points

• family history on adhd and diagnosing
• meds
• day to day woes as a parent
• executive function; disassociation; demand avoidance
• learning to do better as a parent
• wrap up with some positivity

#5 References n/a

#6 Calls to Action

pre-roll: thanks and share

#7 Social media n/a

#8 Next Episode tbc

#1 Even thinking about your child potentially needing a residential placement is traumatic and gut wrenching so actually sending them is the hardest decision families can make. A personal episode to raise awareness, to help the decision making process for parents/carers and to rid the stigma of what people assume it is.

#2 Guest N/A

#3 Time Stamps

00:00 Intro and 3 reasons why I am recording this episode.

2:00 Learning form our own neurodivergent children and adults.

4:30 Being done with the guilt and shame of having my child in a part residential school.

5:05 What others assume.

6:25 What the truth is and how incredible these schools and their staff are.

8:33 Our experience and the benefit to our son and family.

9:32 The impact (on me) and where our son is at now 2.5 yrs on.

18:21 Support for parents/carers making a decision on a residential school.

#4 Summary

• awareness, help in decision making, shutting the naysayers up
• do not judge
• what others assume
• the truth - residential schools (good ones)
• our sons progress and the benefits to him and the family
• support, encouragement and validation for parents/carers

#5 Calls to Action

Pre-roll: thanks to listeners and recent stats

Mid-roll: n/a

End-roll: n/a

#6 References/Links

N/A

#7 Social media

N/A

#8 Next Episode - tbc

#1 Continuing the S2C journey with my son Henry who is 13, non-speaking autistic and adhd. He is learning to point to letters of the alphabet on stencils to answer questions from age appropriate lessons and I am learning to become his co-regulation partner (CRP) on the stencils/boards. It is a long journey that takes an enormous amount of commitment. It is fraught with inconsistencies and frustrations, takes many people to be invested in it, heaps of belief and the determination to never give up. But what could be more important right? It will eventually lead to Henry being able to spell out his own thoughts and ideas giving him not only access to communication at last but agency and autonomy too. How incredible and how exciting.

#2 Guest N/A

#3 Time Stamps

0:00 Intro to episode and Part A recap.

1:00 What S2C sessions look like and involve.

3:13 Becoming a co-regulation partner (CRP).

9:30 What your practitioner will teach you the parent about: speech vs language; types of motor; presuming competence; the boards/stencils and how to use.

14:35 Paradigm shifts to make as a parent.

19:35 What is least dangerous assumption you could make?

20:57 Where I am at with Henry so far and how it has gone during the past 9 months or so.

#4 Summary

• Part A recap
• Becoming a CRP
• Learning about elements of S2C: speech v language; motor; competence; boards
• Paradigm shifts to make
• Where Henry and I are at in our journey now after 9 months or so

#5 References/Links/Books:

see links below

#6 Calls to Action

mid-roll: my monthly newsletter on www.thethreadsoflife.co.uk

#7 Social Media

see @_thethreadsoflife_

#8 Next Episode

November and tbc

#1 Taking a look at what progress actually looks like for parents of neurodivergent children and adults. How their progress is typically measured. They are growing and developing all the time regardless. A brief look into Apraxia for nonspeaking individuals. Recognising that it's can't not won't; believing it gets better by just being there for them and learning every day. Learning to recognise, acknowledge and celebrate the wins, even what to others may seem tiny or insignificant.

#2 Guest: N/A

#3 Time Stamps:

0:00 Intro

0:13 Neurodivergent children are measured against what neurotypical children their same age can do. Not fair or appropriate.

1:14 No-one in education is harnessing the potential of the ND mind or even being curious.

3:25 The environment you place them and their amazing brains in is key.

5:00 Nonspeaking, minimally or unreliably speaking individuals and Apraxia

6:35 There is no look to listening or to intelligence

10:07 Using my son as reference for and naming examples of - me reaching out to parents and their children/adults who are really struggling right now.

16:12 There is model or previous generation experience or anything even from most of our parents on how to support and raise an ND child.

18:30 It gets better! It does. Example - sleep.

21:38 The water trick and recognise, acknowledge and celebrate the tiny wins. They are actually BIG wins.

#4 Summary

• neurodivergent minds are simply brains that work in a range of different ways.
• How ND children's progress is typically measured in education.
• Apraxia, the brain v body disconnect
• There is no look to intelligence or to listening.
• Reference to and examples of what progress looks like in my own son Henry who is nonspeaking, autistic and adhd.
• There is no guide or support for parents.
• It does get better, there IS progress, they do grow up.
• Recognise, acknowledge and celebrate the tiny wins, they are what progress looks like and they are huge!

#5 Calls to Action

Pre-roll: My Journey with S2C episode mention.

Mid-roll: Uniquely Human Podcast.

End-roll: none

#6 References/Links

None

#7 Social media

N/A

#8 Next Episode

tbc

#1 These days we are all largely aware of neurodiversity and roughly what it entails but, how would you describe or define it to someone? What exactly is it in average person speak and what's important about it? Who does it include? Going on to talk about abelism and inclusion and what an inclusive classroom should look like starting with presuming competence in all students.

#2 Guest N/A

#3 Time Stamps

0:00 Intro

2:05 Advocacy; Identity First Language and Disability.

5:20 The Neurodiversity model of Disability.

6:42 What neurodiversity is not.

8:18 Abelism, what is it?

10:53 We are ALL as human beings co-dependent.

13:49 Myths about non speaking autistic individuals.

17:35 Inclusion.

#4

• Intro and where I have learned about neurodiversity, abelism and inclusion from.
• Advocacy, Identity first language; Disability models.
• What is neurodiversity, abelism and inclusion + what they are not.
• Analogies to help us understand and relate to.
• Myths about non speaking autistic individuals
• Spelling 2 Communicate
• Quotes and references

#5 Calls to Action

pre-roll: webpage

mid-roll: thank you re podcast listens and please share

end-roll: newsletter sign-up

#6 References.

Quotes:

Neurodiversity - Judi Singer; Steve Silberman (author of Neurotribes book); Thomas Armstrong.

Inclusion - Miller & Katz 2002; Newton 2017; Cheryl Jorgensen.

#7 Social media

N/A

#8 Next Episode

What does Progress Look Like?

#1 Part A of my journey with my non speaking son Henry age 13 and S2C - Spelling to Communicate. Where it began and how I find out about it; understanding presuming competence and that it his body he cannot control well (including the eyes) in purposeful motor movement. Our first sessions and being introduced to a practitioner and the stencil alphabet boards.

#2 N/A

#3 Time Stamps:

0:00 Intro

1:50 Where it all began/how I found out about

2:56 Tit bit - put yourself out there, take the plunge, it's a journey

4:14 Meeting Emma Bond (and her son George)

5:00 Act for Autism - Tessa and Jane, Warwickshire (+ their book)

6:17 S2C - A personal story in a book called "Underestimated". So, what is it?

10:26 Elizabeth Vossellor (EV), Founder of S2C and evidence based methodology

12:13 Meeting EV and Anna Lechleiter of Palz Ireland, in London

13:30 Session 1 - not good

15:45 Hope and skepticism + Session 2

19:30 Disappointment

21:53 Re-start: Take 2

23:08 Parent Cohort

#4

• How I found out about S2C
• The Book called "Underestimated"
• The website and founder Elizabeth Vossellor
• Going into London for 5 sessions over 3 days
• Stepping away and returning

#5 See links below

#6 Calls to Action:

End-roll: website, social media, newsletter, podcasts

#7 N/A

#8 Next episode - tbc

#4

#1 A look into how often others/society makes assumptions about neurodivergent and/or disabled people's intelligence just by what they see. having heard about the children/adults and their parents struggles the assumption is that they are always miserable and struggling and a real challenge for their parents, as if there is no joy. What is presuming competence and the true meaning of inclusion, all in Mum/S2C Practitioner-speak!

#2 Guest N/A

#3 0:00 Intro/Welcome, I'm back

2:51 Today's episode

2:51 The assumption by others/people/friends you know that our autistic and/or neurodivergent children are always struggling and unhappy and that it is an exhausting all day every day challenge for parents.

10:15 There is always a unique personality with interesting thoughts and ideas in every neurodivergent or disabled person you meet.

11:06 What is presuming competence? 12:57 Definition - Cheryl Jorgensen 2005

15:57 Speaking age appropriately to my autistic non speaking son Henry

20:53 Podcast - follow - review - share. Thank you.

23:58 The true meaning of inclusion

25:15 Interested in S2C? Have a look at www.i-asc.org

#4

• Assuming and judging others intelligence by what we see
• All neurodivergent people have unique personalities with their own thoughts and ideas and they are most often fascinating, interesting, humorous, lovely, lovely people. Be curious.
• Presuming Competence
• Speaking age appropriately to disabled people
• The true meaning of inclusion
• Interested in S2C?

#5 Calls to Action

Pre-roll: web page

Mid-roll: podcast follow/review/share

End-roll: look up I-ASC

#6 Next Episode - tbc

#1 A good hour long episode chatting to Tracy; how we met; Tracy's background as an OT; her PDA (pathological demand avoidance) and autistic son Jack; their family; discovering NVR (Non Violent Resistance) and a new family venture called 'Aspects Together'!

#2 Tracy Weiner

#3 Time Stamps:

0:00 Intro to this episode and Tracy, how we met and Tracy's journey

6:35 Why is my child not coping? What is wrong with my parenting? Discovering PDA and getting no support.

15:08 "It's can't not won't" and "meet their storm with your calm"

16:40 NVR - non violent resistance, a theraputic parenting program through CAMHS

32:08 PDA Tops Tips

45:35 'Aspects Together' - new venture with husband Mark - see fb page

52:13 A story about my Dad and being a carpenter...link to men's mental health and the woodworking workshop at 'Aspects Together'

57:27 a long and positive and uplifting round-up

#4 Summary

• Introducing Tracy, her OT background and family
• PDA - the journey and top three tips
• NVR - a pivotal part of Tracy's journey so much so that she is now a registered practitioner.
• Tracy's new venture with her husband Mark called 'Aspects Together'

#6 N/A

#7 PDA Society; NVR and Aspects Together + Blinkvist - see research links

#8 Next Episode :

Neurodiverse people can be happy and are wonderful human beings.

#1 This is not an episode on bad parenting or bad children, its an episode why we feel like bad parents and why our autistic and/or adhd and/or neurodiverse children are often made to feel this way. How us parents wish someone could come into our homes and simply observe and offer helpful advice on how to make getting through each 24 hr cycle easier + have someone who actually can witness and believe us and our children. Why its a challenge every single day and what a quick run through of 24 hours in the home is like.

#2 Guest N/A

#3 Time Stamps:

0:45 Intro to this episode

1:00 feeling like a bad parent

2:37 who is there for the parent for those 12-16 hours every day?

2:57 what we wish we had...someone actually come into our home to observe

3:30 someone to believe us and believe our children

6:00 my experience with this actually happening for me and the difference it made

8:30 rant about social service

11:39 Friends or relatives or 1:1's or ta's etc wanting to know what its actually like and how to help

14:57 can't NOT won't

17:00 The 24 hours!

#4 Summary

• feeling like a bad parent
• what we parents wish someone would do for us
• why social services does not work for neurodiverse families
• our autistic and/or adhd and/or neurodiverse are not bad or difficult, just different and with unique sensory challenges
• what a 24 hour cycle can be like
• how to be a better friend or relative and help
• you are not alone, your child will be ok
• SpellX event online. Free!

#6 Calls to Action:

Pre - roll: I am 20 episodes in...thank you for your listens and shares and follows

Mid-roll: newsletter sign up via website and how to find it quickly

End roll: The free online SpellX event

#7 SpellX - see research links

#8 next Episode- tbc

#1 Food wars vs food relationships and the battle with their sensory systems that are constantly changing. There is so much more going on than just the food. It's different to the neuro-typical journey of fussy or picky eaters. My own experiences and advice from having raising a now 20 yr old son who is adhd plus my youngest Henry who is on speaking, autistic and adhd, age 12. They do grow and develop and their eating habits, relationships with food and mealtimes do get better. Look to professionals (nutritionists, dietitians etc)who are autistic themselves and/or actually live the autism journey as parents for the right advice e.g Yaffi Lvova.

#2 GUEST: N/A

#3 0:00 Intro

0:48 'food wars' should really be 'food relationships'

1:37 It's not war against the child, its against their sensory systems

2:00 Its not just about the food

4:04 what's especially tough for parents

5:31 my own experiences and examples with two of my 3 children

9:37 under/over weight

11:25 Nutritionist and other 'experts' advice

14:00 mix it up, experiment, try not to get riled, forget the traditional rules/norms/manners

17:25 The younger years and thinking things would never get any better, and the now

22:00 Our childrens brains work differently, it is not the same

22:30 Yaffi Lvova, nutritionist and dietitian who lives it and knows the autism journey.

#4

• food wars vs food relationships
• it's about so much more than the food
• what we all know as fussy or picky eaters
• it's different for autistic, adhd, spd, neurodiverse children
• expert advice should come from those who are actually autistic or actually live it
• my own experiences wiht a 20yr old adhd son and a 12 yr old non speaking, autistic and adhd younger son.
• it will get better, it takes time and adjustments, experimenting, mixing things up, never giving up

# 5 Calls to Action

pre-roll: new name, website, newsletter

mid-roll: thank you for the listens + follow + review/comment

#6 see under 'research links'

#7 N/A

#8 n+Next Episode...tbc