Tag: #Parenting

TSC Talks! Final podcast~Wrapping it Up & Thanks

Jill wraps up the podcast! I started in 2016 by interviewing my kids and how they were affected by Tuberous Sclerosis Complex. It was absolutely divine inspiration from the start and branched out shortly after to interviewing community members and other professionals who worked with those affected. From there, I explored many different topics, providing information and resources in interview form, all with relevance to the individuals and/or parents/caregivers affected by a chronic illness like TSC.

Pushing the boundaries of what was deemed “safe and effective” by our medical system, I continued to put the info out there based on my own lived experience as a parent/caregiver living and dealing with what I’d come to discover is CPTSD if you want to use a label. It was my vision and still is that all “remedies” for improving the quality of life of all involved in the wheels of chronic illness, particularly one such as TSC which affects all the vital body organs, will be an option for all.

Why should we hold back the river when there are so many speaking about how their lives have been impacted by sharing their truths, sharing what’s worked for them and what potentially might help another ease the very real and almost daily traumas of attempting to live with an open heart and navigate our inverted systems of care?

Many of these podcasts go against the grain of what people are comfortable hearing. There are always positive takeaways but there are some heavy heavy experiences that people are walking through and talking about and must be given voice. I think through honest conversation, and taking full responsibility for one’s reactions to other’s sharing from their most painful, heart-wrenching moments, we can begin to hear each other once again at least long enough to realize, we’re all having vastly different experiences yet we all long to be here now, safe, loved, whole, home.

Thanks for tuning in and being here there and everywhere. It’s been the pleasure of a lifetime to have the opportunity to create and share this work.

Love Jill

Giving Thanks for My Specials – Thanksgiving Day 1993 Nina Patry~Guest Blogger

The following blog was written in 1993 by my new and good friend, Nina Patry. Nina hails from Rutland Vermont. Her claim to fame is that she is a certified Paradox Process instructor. We met last year while I was getting called up on a Lorie Ladd live event and not able to get my equipment to work to … Continue reading “Giving Thanks for My Specials – Thanksgiving Day 1993 Nina Patry~Guest Blogger”

The following blog was written in 1993 by my new and good friend, Nina Patry. Nina hails from Rutland Vermont. Her claim to fame is that she is a certified Paradox Process instructor. We met last year while I was getting called up on a Lorie Ladd live event and not able to get my equipment to work to connect. Nina was cheering me on and we ended up chatting on FB and pretty soon we both realized we had connections to special needs individuals. Me, as a parent, and she as a sister and aunt. We’ve been friends ever since, in fact, to learn more about Nina, listen to the podcast I did with her. (link) During a recent conversation, we were discussing some of our experiences of the extraordinary abilities of our loved ones with special needs to be far more energetically tuned in than most ever imagine and what a gift, it was to have these “seers” in our lives. Then she read me the following bit of prose she’d written, which I immediately knew I had to share. I left the language as written. While harsh to read, it speaks somewhat to a bit of evolution of consciousness, that must continue in an accelerated manner related to all things we now define as “special needs”. Thanks, Nina for this precise and moving piece.

I went to Church this morning.  First time in a long time.  In Charlottesville, Virginia, where a large portion of our family has gathered for Thanksgiving.  And I found myself particularly thankful for the special people in my life.

I sat in the front row, surrounded by my brother and my nieces –  all “special needs” people. Christopher with Down Syndrome, thirty-two years young; Maggie and Emma are developmentally delayed, with no more specific label attached.  Maggie and Emma are identical twins, eight and a half years young.

Retarded.  Developmentally delayed.  Rather judgmental terms—or at least markings at the low end along a linear evaluation of human beings.  I prefer the Rudolf Steiner/Camp Hill movement view.  That perspective places these people, at least on the spiritual plane, as beings more closely aligned with the unseen spiritual aspects of reality.  They are seen as souls who have difficulty adapting to, accepting, relating to the advanced state of materialism much of our world reflects these days.

It is said in Camp Hill literature I have read, that these souls incarnate, but cannot enter fully into the mindsets, perceptions, and values currently dominant in “modern” or “postmodern” culture.  Instead, these folk arrive, one foot in and one foot out.  Here, but not here in the same way the rest of us are.  And in that difference, their presence is a strong conduit, one which the spiritual plane needs to help bring our world back into balance.

These folk live their lives in many senses free of the pressures, drives, greed, and fears that many of us “normals” experience.  They exist on more basic levels.  And freedom from the materialist drives seems to leave them more time and energy for the truly important aspects of life.  The unseen.  Love joy emotions happiness.  Freer to be themselves—they don’t understand so well our “civilized” codes—the dress code, the wariness and distance with “strangers” codes, codes on the “proper” ways to be in various situations.

I personally love to witness the ways in which this freedom reveals itself.  Both Chris and the twins are more overtly, actively friendly to strangers than many other people I know.  Saying hello, smiling, sometimes staring (definitely considered rude by some), but it is clearly an observation and awareness of others that many of us believe need to be kept secret for some reason.

My brother loves to attend performances of many kinds, especially musical performances.  He will encourage the performers from the audience.  Give them the thumbs-up sign or a wave.  He is often the first on his feet to give a standing ovation and likes to go up to the stage and shake hands with the performers.  (If any opportunity presents itself for him to get his hands on a microphone, so much the better!)

And last night, too, when Mom, Dad, Chris, and I arrived at the airport, Maggie and Emma’s greeting was contagious.  Flapping, smiling, almost flying around the airport in their unconfined excitement over our arrival.  For these and so many other reasons, I am eternally giving thanks for my specials.  

https://linktr.ee/jillwoodworth

Points of Light~Linsey Hurley~Holistic Health Coach Working with Cutting Edge Energy Healing Technologies “Silver Linings”

Linsey Hurley is a holistic health coach, and she has worked with cutting-edge energy healing technologies for many years. She was led to the alternative health field after her experience witnessing her sister go through stage 4 breast cancer within the mainstream health system. Despite her and her sister doing much research and finding alternative treatments which when suggested, were basically brushed off and ignored. This was over 40 years ago. She ultimately lost her sister, and faith in our conventional system, which explains the silver lining. Her sister inspires her and is with her every day and she is grateful for her impact on her life, ultimately pushing Linsey into utilizing and sharing these amazing healing energy devices and tools today! The rest of this story is in the podcast. See timestamps from the transcript below.

I met Linsey Hurley this past December when we both participate in a Freedom Flash Mob dance event at a local mall. It was a fun and powerful event, a group of locals suddenly bursting into dance and raising awareness of our right to medical freedom! So, I figured the people I met at this event were pretty special. I got a text from Linsey a few weeks ago and we got to chatting. She told me a bit about her business and this new patch she had been guided to that was quite interesting. At that point, I decided to invite her on the podcast to discuss and was quite impressed with what I learned, and the potential of this new tool, X39 patches as well as other offerings at Livewave

If interested in learning more, you can reach out to Linsey at linsey@newview.org by phone at 9787937291. For more information on the product~ https://startx39.com and if you would like to sample some, contact Jill Woodworth at pjlacy6@gmail.com or order at https://lifewave.com/jwoodworth

Here are a few links with some scientific info~
http://stemcellpatchresources.com/wp-content/uploads/2019/11/QA.pdf
https://www.lifewave.com/Content/images/home/science/pdf/Photobiomodulation-or-low-level-laser-therapy.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073405/
https://newswire.net/newsroom/blog-post/00227659-the-science-behind-life-wave-s-wearable-phototherapy-technology.html
https://theoptionsph.com/2021/01/10/lifewave-phototherapy-patches-too-good-to-be-true/

timestamps:
1-2:18 Introduction
2:18~Linsey’s story, holistic health coach…. started 40+ years ago when her sister was diagnosed with stage four breast cancer
3:06~this experience w/her sister and watching her go through all the conventional treatments to no avail despite doing research w/her sister on alternative options, led her to not have much trust in our conventional medical system
3:57~Again her experience with her sister led her to alternative health and deeper into spirituality to process this loss, which was over 40 years ago and she’s still here. She considers this a gift from her sister.
5:36 the mainstream narrative keeps us in fear and subservience with no energy to consider why we are here
5:57~Linsey’s sister is still with her
6:32~Start of discussion on X39 patches which support the body’s natural systems
7:23~the body is brilliant! We can support it in the way it wants to heal
7:45~FDA glitch at beginning of the pandemic, Linsey could not use regular tools such as the Beamer and was led to X39 patches
8:06~X39 patches are a frequency device that activates the body’s stem cells.
8:37~A discussion of exactly what stem cell therapy is, what’s involved, the expense, often making it inaccessible and usually used as a last-ditch effort when all else has failed
9:53~further explanation of the patch, non-transdermal, made of amino acids and salt crystals, activates different reactions In the body
10:36~the science is putting frequencies on the skin that cause other reactions leading to doing some healing
11:04~David Schmidt is a scientist who was hired by the Navy to develop a patch for Navy Seals to replace amphetamines
12:02~Linsey uses a lot of patches now she has all her grandchildren living with her~more patches have been developed
12:24~David Schmidt brought this technology to a friend who was a coach of UCLA swimming, he’s been developing and working on it ever since. Different patches are all based on the frequency
13:15~X39 patch is the holy grail -activates GHK Copper Peptides that decline with age
14:10~It’s just actually about age reversal, have had a 70-year-old test with the body of a 50-year-old
15:00~Helps with all kinds of degenerative diseases, many testimonials, MS, Parkinson’s
16:17~comparison of different frequency devices, AO Scan, Beamer, all are wonderful and if possible used right now to get through these times when we are bombarded with energies, 5G, EMF…
17:20~Linsey had an autoimmune disorder, 15-20 years ago, had to quit her job, “3-year retreat”, trusted spirit, found Kangen water, another healing modality which was expensive but a good investment as she was able to heal.
20:29~Our healthcare systems are frustrating, organ-based, siloed, going from one drug to the next, Band-Aid instead of getting at the deeper reason for illness, no quality of life
22:06~Doctors educated at medical schools funded by big pharma and are taught nothing in regards to energy even though they use technology like MRIs which could be used in healing
23:18 Bruce Lipton~Placebo effect
24:00~Potential for special needs communities is huge with these patches, also for parents and caregivers
24:21~Only restriction is not to use the patches during chemotherapy as it will detox the chemo
25:05 If the patch effect is too strong, take it off for a few hours. Linsey’s experience with retracing
26:36~You won’t want to stop, you will see a decrease in results if you do not continue use, Linsey is very upfront about this. This is an out-of-the-box business paradigm and opportunity!

Points of Light~ Leigh Anne Bianchi, Founder of Good Citizenship Project, Activating Good Citizens~Part Two

SEE SHOW NOTES FOR PART ONE FOR MORE DETAIL! https://tsctalks.com/leigh-anne-bianchi/
I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free-ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms.”

For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/ phone: (508) 868-0293 email: leighanne.bianchi143@gmail.com

Timestamps for part 2:
0-52 Intro
00:54- Antonio’s Waitress Olivia treats them like humans, the start of the discussion on sexuality and special needs
2:26 All the PC of working w/special needs has made sexuality issues really challenging. People taken advantage of, they are developmentally younger and no one talks about this
5:03 Karaoke, real-world situations help
5:28 Dashboard confessionals, you can say stuff without eye contact when conversations about penises and vaginas come out. Pediatricians recommend using scientific wording, Leigh Anne took all the training on autism/special needs and sexuality and can talk candidly.
9:27 Why questions, keep asking them. So many lives could be ruined if everything is flagged as inappropriate. This population never gets to ask questions
11:06 Leigh Anne had to spend 5 minutes spend w/individual who had sex offender charges in ISP and Leigh Anne knew charges were not true-example
13:16 Paying for Good Citizenship Project….if you have an autism diagnosis, sometimes easier to get funding, agencies often don’t want to pick up those with autism but things changing and agencies can help you get funding to cover through DESE/Wraparound Family Services, Public Partnerships through Participant directed programming conduit, Private pay, PCA funds, DDS Family Respite funds
20:11 Leigh Anne should be paid more for all she offers. Charges $30/hour but will work with families. Leigh Anne does not have a BCBA or other letters after the name that would allow her to be recognized as a service agent but has the lived experience and work experience to exceed those with mere education
23:26 Becoming a non-profit would mean more strings attached, Johnny her horse would have to be certified as a therapy horse, her dog a pit bull mix, too many hoops to jump through. Jack couldn’t have used a log splitter!
26:31 Investor/philanthropist would be ideal with no strings attached. Leigh Anne took a chance w/Camp Marshall, wanting to partner and have it be her home base. If associated with an agency the volunteers would need to get paid. All benefits from GCP are not recognized as beneficial for many who don’t understand the depth of what she does.
31:31 Work to ride is an option or unpaid internship/apprenticeship. So much happens in learning these farm skills that is energetic…deciding how to perform tasks and learning from any mistakes, having the freedom to learn from mistakes like using a pitchfork instead of a shovel for a particular job…
34:21 Farmers giving the flexibility to figure out the approach to completing a job is helpful. So then it’s not regimented, can focus on the end results, not the niggling details and farmwork facilitates executive functioning in this area. Learning at the moment, the Montessori approach is part of Leigh Anne’s process
37:31 Give individual rules, allow them to screw up and figure it out is more powerful than reading how to do something in a book or being told what to do. Forced problem solving, you remember you had to take a different approach. This is empowering!
40:46 GCP NEEDS MONEY TO EXPAND! Fundraisers coming soon. Discussion of fundraisers
43:36 Looking for a home base with specific parameters. She needs to bring her animals. This has been challenging, small private barns are nervous to have special needs population-liability. Leigh Anne looking for a life in a caretaker position
46:21 Jack came in (Jill’s son who participates in GCP). Leigh Anne is looking for a situation where most of the labor at the new setting is done by members of the GCP. She screens applicants for a good match, meets parents and individuals, gives a grace period. Wants it known GCP is a for-profit not an agency.
49:01 But Leigh Anne is more than a job coach. The people she supports are part of her family. “So you want me to pay for you to force my kid to do slave labor” is some people’s attitude. No, they are learning transformative, resume-worthy skills.
51:11 Leigh Anne went to Salter College, able to be successful b/c was focused on one thing. There is real value in jobs that don’t require a degree. People do not see the scope of autism…Ford Motor Co was seeking to hire those on the Autism spectrum b/c of attention to detail/focus.
55:11 One of the goals of GCP is to raise awareness of what an autistic person looks like which has spread by word of mouth, inspiring others to think outside of the box in creating programs for this population. B/c of relationships developed through GCP, Leigh Anne has options-a temporary place to live if needed “if you do good things, they come back”. In our society many expect something in return for every little thing
60:11 Carla Bell is Leigh Anne’s business manager, helping her with a business plan and fundraising has worked in special ed
Thanks so much for listening!!! https://tsctalks.com

Points of Light~Leigh Anne Bianchi, Founder of Good Citizenship Project, Activating Good Citizens~Part One

I had the pleasure of interviewing Leigh Anne Bianchi, Founder of Good Citizenship Project recently on TSC Talks. She was joined by her business manager Carla Bell. We had a free-ranging discussion covering many topics but all regarding the benefits of the sort of unconventional programming Leigh Anne has developed through GCP and how this meets many of the huge gaping unmet needs for those individuals diagnosed with autism and other special needs that our systems of care have become too siloed and disconnected to address. “Developing a sense of meaning and purpose, social-emotional skills, work ethic, and peer relationships by volunteering, distributing donations, and supporting local farms.”

In my opinion, what she shares are gems of vital importance. As someone who carries a diagnosis of Autism AND has worked within our siloed and disconnected systems of care, she gets it on a whole new level. What is missing, what is needed. One of her most important assets is her ability to ask why and watch, observe what is going on without judgment or preconceived notions based on dogmatic teachings not relevant to real life. Leigh Anne IS real life. She knows how what and why to reach and engage kids who have often had no one their entire lives really see them. The energetics of the interactions are often the most important part and the very part of our offspring with special needs education that is rarely observed or explored. To do so freely requires unconventional programming and thinking and IS what will give these individuals deeply embedded experience to carry forward and integrate into every aspect of their lives. Priceless.

So that being said, this is one of the most important discussions I’ve had to date on TSC Talks personally as my son Jack has benefitted immensely from participating in this sort of immersive, apprenticeship experience gaining valuable skills, both tangible and energetic. Here’s a recent description of gains made: “There’s A LOT going on there when we’re together. Not just the obvious, like physical fitness, and employment-based objectives, but Distress Tolerance, Mindfulness, Interpersonal Effectiveness, time management, generalizing skills, problem-solving…. learning how and when NOT to answer back to an authority figure. (Instead of saying, “I know,” or “I was going to do that,” when he clearly wasn’t, just saying “OK.”) We address that OFTEN. Staying on topic, being able to complete a task WHILE socializing….

Another example is planning. Looking at the task at hand (like cleaning a pen or stall) and being able to decide which tools you’re going to need (the pen might require a garden rake and a metal pitchfork, vs. an aluminum shovel and a plastic pitchfork for the stall), and how to efficiently complete the task. Right now, he tends to be on autopilot at Jesse’s, because he’s done it before, and knows what tools to use. But if we go to a different barn/farm, he will sometimes just walk into the stall without any tools or automatically grab the tools that he’d use as Jesse’s. But Jesse has brand-new rubber stall mats under the shavings, whereas other barns might have hard, packed-down dirt that is uneven, old, warped stall mats, or even slab cement under the shavings, which impacts the tools needed for the job. Additionally, the concept of ‘using your head to save your feet and planning out the technique or way you’re going to do something….like cleaning the stall of the older horse first so that you can put him in there to eat first since it takes him so long. Or, turning on the hose as you walk by it upon arrival, so you don’t have to go all the way back out to the spigot when you’re ready to fill waters” You get the idea. Enjoy the podcast!

For more information on Good Citizenship Project, FB page: https://www.facebook.com/GoodCitizenshipProject/     Phone: 508-868-0293 Email: leighanne.bianchi143@gmail.com

Time stamps~part one

0-4:22 Introduction/opening comments

4:22 Formative years, Grandpa Frank, early signs of autism, overlooked in educational settings, temper, frustrations, family supportive

6:42 Principal’s office, using a paddle, siblings with similarities

8:27 People on the spectrum are empathetic! Animals get it

9:52 Meeting Johnny-“he chose me”, a sucker for the underdog, …both dogs rescues, cats and house chicken!

12:12 Leigh Anne’s challenges-struggled through school, awareness of being different

12:47 Postgrad programs-infuriating and necessary-started with good intentions but people not honest with students about reality

14:57 4 years in post-grad almost wasted, doing worksheets, Leigh Anne shares story of a girl she worked with having to do preschool puzzles

17:02 Toileting-EIP avoided b/c it was assumed she was not going to ever use the toilet but Leigh Anne noticed underdeveloped musculature~ “It’s amazing what you can figure out if you just pay attention a little bit” BCBA determines the course of her future…. on a different track if cannot use the toilet!

17:10 we need more people like you who presume competence!

19:57 Leigh Anne can see birds-eye view on why the life skills programs are the way they are..too many kids, squeaky wheel/most intense needs, profound symptoms get attention and people with milder, more subtle issues fly under the radar

22:22 stop and look at why? Leigh Anne gives example with a woman from Belchertown-only thing she could control was her bowels so used incontinence … giving options and letting her choose and always asking WHY is this happening?

26:02 So many things were out of young lady’s control, diagnosis can be a tool and a knife that cuts both ways

27:32 having a diagnosis can be helpful if you can handle it…

28:37 Rose-colored glasses, person-first language, and the pendulum swung the other way for those turning 22. Leigh Anne thinks there should be required classes for parents, so they know what to expect when turning 22 and transitioning to adult services, etc.

32:29 Leigh Anne is UNCONVENTIONAL!! Caseloads at DDS extreme, high turnover, problems with adequate staffing in group homes

33:16 GCP (good citizenship project) Started when she was working as a program coordinator at Seven Hills, minimal consequences for behavior with not realistic environment. Folks turning 22 smart, capable wonderful kids with potential and no self-awareness skills, minimal options

37:32 Nonprofit/volunteering issues, for-profit volunteer issues, liability issues, not a lot of places for GCP so L.A. developed plan that you could not join GCP unless you had good attendance, no aggression, pitched to Phil Philbin (former head of Aspire) and GCP was started at Seven Hills

41:40 First event was a chili cook-off, building community relations, thanking firefighters, getting constructive feedback, also hosting Friendsgiving, kids did all the work

43:44 GCP-you do nice things for other people without expectation of anything in return” You feel good when you do good things, and it will come back to you

46:32 Info on finding GCP, see above, no requirements for joining, Leigh Anne’s rules0deal with circumstances, weather, not for faint of heart, hard work

49:26 Jack’s response to GCP amazing. “A taste of success” from Better Off Dead 😊 get instant rewards with animals and practice. Very empowering

55:07 Emu Jersey is goofy, no boundaries will nibble on the jacket, kids will allow b/c it’s not a person so a way to practice

58:09 Leigh Anne was a Case Manager, and she would never read up on clients b/c you form judgments

59:26 If you have a diagnosis and an IEP you’ve been taught how to judge first and think later

59:51 Leigh Anne wants members of GCP to have a sense of meaning and purpose, know how to speak up for themselves in an effective way

1:00:39 Jack, example fear of failing, etc

1:02:14 Unintended goals, squelching learned helplessness, parents often tired and will not give time for a child to learn on their own

1:05:02Farm a great template, you need to keep yourself safe, level of self-responsibility is required but they can find it!

1:07:09 Blend into neurotypical, Leigh Anne wants to give tools, so life is not so difficult. Examples shared

1:08:37 Restaurant example-this population is not used to choosing, having discussions at the restaurant, taking pressure off

Stay tuned for Part 2!