';
Authors Posts by Carol Ferenz

Carol Ferenz

1404 POSTS 0 COMMENTS

0 3655

(shared by the mother of two sons with intellectual & developmental disabilities/autism, Nechel spoke at the Capitol at one of our recent rallies)

My name is Nechel. My education is in art education. I am no doctor, so do your own research, I can only speak from my experiences, and would like to share them with you.

I have two sons, 22/21; both are on the autism spectrum. My 22-year-old was diagnosed at three years and has high functioning Asperger’s with severe generalized anxiety. Secondary diagnoses are sensory integration disorder, OCD, ADHD. My 21-year-old was diagnosed at 11 months old. He actually has two primary diagnoses – severe autism with aggression and ID. Secondary diagnosis – SI, OCD, language delay, ADHD.

Both sons struggled with childhood sicknesses like most do, including allergies, RSV, croup, ear infections, sinus infections, etc. My youngest son suffered more with these illnesses, which exacerbated the aggressive behaviors! He was taking an average of eight antibiotics per year! He has had six sets of ear tubes, tonsillectomy, sinuses were cauterized, but still needed to be on antibiotics several times a year! His health was impacting behaviors and therapies profoundly. I went on a mission to get my sons healthier.

We have tried many therapies and services over the years, both outpatient and in school. We have utilized Occupational Therapy, Speech Therapy, and assistive technology for language including devices such as “Say it Sam,” and Prologue2go. We have explored/accessed BCBA, BSC, TSS, MT, talk, special school programs, social groups, different foods, and therapies such as play, equine, and music. We have been to specialists, and experimented with homeopathic medicine, and many medication trials!!

I have been using all natural items I have researched in determining each boy’s needs. I capsulize several items for ease of dispensing and avoiding sensory issues. The silver tastes like water so I add to drinks. My sons use immune boosting supplements such as a multivitamin, D3, B-complex, Zinc, Magnesium, Probiotics, and Melatonin. For anxiety, one of my sons uses CBD, Bergamot tablet/roll-on, and Valerian root. My 22-year-old son is now off all prescription medications. My 21-year-old has now gone almost five years with no need for antibiotics, and five fewer prescriptions!

Both use natural remedies such as Mullein EO, sovereign silver liquid/nasal spray PRN for allergies. At the onset of any illness symptoms, we use oregano, elderberry, increase D3, increase Zinc, C, and sovereign silver (liquid, spray).

Due to dietary selectiveness, I utilize a vegetable and fruit-based protein powder with probiotics to bake cookies/brownies. Utilize whatever way works for your child. Amazing flavor, several flavor options, with no chalkiness! I replace flour with this product, undetected!

One experience I would like to share is extraordinary. I learned about Red Pine Needle Oil. Several studies on this refer to use in people with autism, Alzheimer’s, and Dementia, in regards to language, mental clarity, and neurological transmitter repair. In the studies I reviewed, EVERY participant showed some type of improvement! So I had nothing to lose! My oldest son, at age 20, had very limited functional language. He spoke in one word responses, and never wrote anything independently. On the second day using red pine needle oil, he spoke independently and clearly, “Pennsylvania polka calendar!” On the fourth day, he said “I love you” to me for the first time ever, independently and clearly! By the second week, he was writing independently, legibly, and spelled “beach hotel!!!” Of course, his favorite place on Earth. Since then, we hear new language all the time. He writes many requests/words!!!

What if we utilized these methods alongside traditional therapies? What if you had a child to work with that was healthier, clearer thinking, lower anxiety, with behaviors lessened? How much more effective would these traditional therapies be?? With this holistic approach, how much more progress could we attain with our amazing children?? Take it day by day! Start with one product and grow it! Don’t forget, you are all warriors!

–Nechel

Photo by Glenn Carstens-Peters on Unsplash

The Office of Developmental Programs (ODP) has shared a flyer regarding a series of free technology trainings. The trainings, titled “My Tech For All,” will teach attendees how to use Zoom, Facebook, email, web browsers, Alexa, Google Search, SmartPhones, and tablets. Training starts Tuesday, October 10, and will occur weekly for six weeks. View the flyer for details and the full schedule.

At the August 2023 ISAC meeting, Self Advocates United as 1 (SAU1) presented a tribute to Carolyn Morgan, who was an inspiring self-advocate who encouraged many others to speak for themselves. SAU1 has developed a Youth Empowerment Fellowship program in memory of Carolyn, and is seeking support for this program, including financial. Their presentation is now available and can be viewed here. If you would like to support or ask questions about the program, please contact SAU1 directly.

The Office of Developmental Programs (ODP) has shared a list of current Agency With Choice (AWC) Financial Management Service (FMS) organizations that are available to support participants and surrogates who have chosen to self-direct some or all of their Participant Directed Services (PDS) using the AWC FMS model and are in the Consolidated, Community Living, or Person/Family Directed Support (P/FDS) waivers. Please view the announcement for additional information and to see the listing.

September continues PA Family Network’s series on Participant Directed Services. Join the team of Family Advisors to get your questions answered about Participant Directed Services and how you can choose to direct your own services under the Intellectual Disability/Autism (ID/A) Waivers. These workshops are created by family members and self-advocates FOR family members and self-advocates.

Register for upcoming events online.

Community Engagement Workshops:
These will only be offered at these dates and times!

LifeCourse Workshops  

Waiver Workshops

Support Groups

The Information Sharing and Advisory Committee (ISAC) met on August 15, 2023. ODP staff shared several updates, including Deputy Secretary Ahrens. The public comment period regarding the Selective Contracting Concept Paper ended July 10, 2023. The Residential Strategic Thinking Group (RSTG) meetings are scheduled through September, and ODP intends to issue a survey to assist in developing performance measures and baselines. ODP will publish the 1915(b)(4) application and any accompanying 1915(c) amendments for public comment prior to submitting to CMS. The PowerPoint presentation reviewed at the meeting can be found here.

Self Advocates United as 1 (SAU1) presented a tribute to Carolyn Morgan, who was an inspiring self-advocate who encouraged many others to speak for themselves. SAU1 has developed a Fellowship program in memory of Carolyn, and is seeking support for this program, including financial. For additional information on this fellowship, please reach out directly to SAU1.

ISAC/ODP strategies to address the following areas were reviewed during the meeting:

#1:   Assure Effective Communication;
#2:   Promote Self-Direction, Choice and Control;
#5:   Promote Health, Wellness and Safety;
#7:   Develop and Support Qualified Staff;
#8:   Simplify the System;
#9:   Improve Quality; and
#10: Expand Options for Community Living.

View the 2022 ISAC Annual Report.