TSC Talks Special Ed and Covid19 with Mike Robinson

In this powerful episode, Mike Robinson, Founder, Global Cannabinoid Research Center, Cancer Survivor, Cannabis Advocate AND former registered Civil Rights lobbyist and non attorney that represented countless children with disabilities, discusses what’s happened with Special Education services under a provision of the coronavirus relief package and why it’s important to take action.

Under a provision of the coronavirus relief package that passed at the end of March, Betsy DeVos had until Monday to recommend any additional waivers of federal education law to Congress. Already, states have been able to apply for waivers to skip annual tests and change how they spend certain federal education dollars. She issues no waivers.

NO STATE has been given the authority to NOT educate special education individuals in the same manner they would regular education individuals or to make the same allowances, as per the Individuals with Disabilities Education Act (IDEA).

https://edsource.org/2020/education-and-coronavirus-whats-the-latest/625119
Education and the coronavirus crisis: What’s the latest?

Under the federal Individuals With Disabilities Education Act, or IDEA, school districts must offer all students an equitable education or they are not supposed to offer it to any of them. Not many school systems have come up with a way to extend online learning and other critical services to the 7 million children with disabilities across the country. And some districts, because they cannot provide special education services at home, aren’t offering online instruction to any student. Now, there is tension between groups that advocate for these students — who each have an Individualized Education Program or IEP — and organizations that represent special education administrators. The advocates are demanding that school districts deliver education equitably, as the law requires, while administrators say they cannot do the same things they did when schools were open and need some flexibility.

Education Secretary Betsy DeVos won’t recommend giving school districts the option to bypass major parts of federal special education law, the department announced Monday. The move will be celebrated by disability rights advocates, who had feared that giving districts any wiggle room could pave the way for a more permanent undoing of civil rights for the country’s nearly 7 million students with disabilities.

https://www.chalkbeat.org/2020/4/27/21239124/no-special-education-waivers-betsy-devos-congress-recommendations-idea

To file a complaint with OCR: https://www2.ed.gov/about/offices/list/ocr/docs/howto.html
Questions: https://www2.ed.gov/about/offices/list/ocr/qa-complaints.html

Thank you Mike Robinson for your advocacy and education on this crucial action that can and should be taken by any and all for whom special education services have been stymied or non existent.

Mike’s Links:
https://mikesmedicines.com
https://genevievesdream.com
https://globalcannabinoidrc.com
https://carouselchallenge.com

To contact Mike about the MILLION MILLIGRAM CBD GIVEAWAY: 50KREASONS@GMAIL.COM
For more information on “Mike Drops” stay tuned and check out https://tsctalks.com/tsc-talks-new-product/
For The Mike Drop on TSC Talks: https://tsctalks.com/special-contributor-mike-robinson/the-mike-drop/

IF YOU HAVE ADDITIONAL QUESTIONS OR NEED HELP COMPLETING A COMPLAINT, PLEASE FEEL FREE TO CONTACT US https://tsctalks.com/contact-us/

TSC Talks Guest Brooke Alisha

TSC TALKS GUEST BROOKE ALISHA

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promoter. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.

Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn’t get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”

She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I’m like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?

After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they’re like, um, you’re pregnant, and we’re going to put you on Prozac because we don’t know if you’ll handle the baby or if you’ll keep it or anything”

To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn’t okay with that. It wasn’t how I grew up personally. And I thought, there’s a reason I’m having her. So, I’m going to just have her and I’m going to get through it. And if I lose her, then it’s meant to be I had to live with myself personally.”

Her baby daughter started having infantile spasms at 4 months and was diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”

Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don’t remember the details. It’s like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don’t know if it was like that for you, but I didn’t have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”

Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it’s a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn’t going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”

She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!

“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn’t even know what it was, and I feel like it’s not talked about enough. It’s not expressed enough. It’s not shown to families like okay your child might have TSC but look out for TAND, they need to be prewarned for this because you have no idea it will come hit you like a bus.”

Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I’m going to take care of something, I’m going to take care of it the way it needs to be taken care of. How do you take care of that? I didn’t know how to take care of that situation. That moment. Everybody’s lives are in danger. My son was being choked from the back. It was very traumatic.”

So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise.

“And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn’t going to live there anymore. And once you decide that you must be at a really big place where you’re like, you know, I’m ready. Because you’re going to get tested and you’re going to get tried, and it’s going to try to break you, but you have to just rise up really. But you have to be at that place, and I can’t tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”

Brooke uses premium nutrition, continues to consult with her doctors, and this system has worked for her, Thrive, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.

This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!

“I mean, there’s been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that’s been amazing, but just the miracle of being 36 now and being told at 30 I’d be in a wheelchair like that’s a miracle. And when people see me and do that stuff, I want them to know that it’s never too late. You still have a life to live!” Bravo Brooke!

Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha
Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/
TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/
Brook’s hair services: https://www.facebook.com/brookesbliss13hair/
https://www.facebook.com/thecolourpalettesalon/
Thrive/Le-Vel: https://brooke2330.le-vel.com/

TSC Talks Guest Brooke Alisha

Thank you for listening.  All of our podcasts can be found at www.tsctalks.com/podcast/

TSC Talks Guest Tiffani Goff

I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoiron the podcast. I followed Tiffani’s journey with her daughter Tiara who had Tuberous Sclerosis Complex for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly.

What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn’t work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that’s the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What’re the side effects? What is the actual condition? How is my child feeling when they can’t communicate? That’s the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?… but I kind of feel like the best advice, if I’m giving advice was kind of just gotta go with your gut. And you just have to really pay attention.”

Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible.

“And when I was dealing with Tiara after the first couple meds didn’t work, and I knew they weren’t working and I realized that some of the doctors, like when a doctor, in the beginning, who’s our first doctor, just picked up and left. I was like, Oh, my, I realized I’m responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can’t just depend, (on anyone) and then when you can’t get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I’m not being scared.”

Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily.

“So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she’s taking up so much time but these kids are here for a reason. I’ve got two other kids and I can’t drop the ball and I knew wasn’t going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn’t abandon them. And my husband is the sweetest guy in the whole world. But he’s never filled out a piece of paperwork for school. He doesn’t know. He didn’t know any of that, you know, he didn’t even know how to find the volleyball schedule online. So, if I wasn’t going to do it, nobody was going to do it. Let me do it. And then when Tiara was here, then well, you know, I just felt like, I didn’t have a choice. And I was always trying to overcompensate. I would not sleep.”

Tiffani talks as well about coping throughout Tiara’s journey, and in the days following her passing, discussing her faith in this quote that I absolutely love for it’s authenticity, humor and deep wisdom, in my opinion; “And then after Tiara passed away, I went to mass every day. I mean, that’s what it is. There are so many downsides to being a Catholic. But one of the great things about being a Catholic is that you can go to any church in the world. And everyone’s saying the same prayer on the same day and standing up and kneeling. And it’s just like a meditation for me. And I don’t limit myself to the Catholic beliefs. It’s like, that’s my home. I love those people. I go there, there’s so many faults and so much that’s wrong. But it kind of just kind of keeps me centered. Because I do believe in mediums and psychics and I believe if you’re Buddhist, your God is still going to be the same as my God, I just like, being a good person and living with integrity. And doing the right thing is my God. And so, it just happens to be I find that at my church.”

Finally, Tiffani discusses poignantly the final days when Tiara was in hospice an she had an interaction with a hospice doctor; “so when we went home from that visit, on hospice when the hospice physician came over, and I was describing Tiara and her life, and she was only able to crawl (at this point in her life) and he was very quiet. It went on and on. And it was so quiet, and I said, Do you think that she’s going to pass away? Like, what do you think? And he said, “’ I’ve kind of never seen something like this. And I’m having a hard time telling you how I’m feeling (he said), because she is suffering so much, and I can’t believe you can still find joy for her.’” And he said, “I can’t believe you’ve made it this far”. I was like, Really? I mean, he couldn’t talk. I was like, so you think she’s going to die? And he said, “yeah, I don’t know how she’s still alive. We’re keeping her alive.” I was so baffling to me. But it was confirming that I wasn’t crazy because he was a total outside person who’d never met her. And just looking at her, and just the way she was struggling to walk or to breathe and how was like, “I need to let her go.”

The full episode is full of wisdom, humor, honesty, tears and a testament to the inner strength, faith and passion on Tiffani’s behalf, a final quote on the power of authenticity in written form, “it’s going to benefit our whole community. You know, because having this many people read about TSC and I’m sadly My story is, other people’s story. There are other families that live that same story. But they don’t have the way to get it out.”

Tiffani’s links!
Purchase the book! 😊 https://amzn.to/2s7tMLg
Tiffani’s amazon page: https://amzn.to/2QDbvPo
Website: https://tiffanigoff.com/
Facebook: https://www.facebook.com/TiffaniGoffAtHome/
Twitter: https://twitter.com/twigdecor?lang=en
Instagram: https://www.instagram.com/tiffanigoff/?hl=en
YouTube: https://www.youtube.com/user/tiffanigoff
LinkedIn: https://www.linkedin.com/in/tiffanigoff/
https://www.goodreads.com/book/show/48912091-loving-tiara
Indiebound.org
Barnesandnoble.com
https://nonfictionauthorsassociation.com/directory/25788/tiffani-goff/

Information on Tuberous Sclerosis Complex: https://tsalliance.org