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Let’s follow Ghana’s example!

I do not cease to be amazed by the brilliance and resilience demonstrated in so called (incorrectly) third world countries.

Presently, the country of Ghana has an incredible group of mothers (some fathers) who knock on all doors to guarantee future educators have the opportunity to listen about autism and the needs of their kids – – based on their reality!

This is one novel concept and one such group is the Special Mothers Project in Ghana. I have interacted with Mary Amoah, the incredible and power house mom of Nana Yaa. Nana is now a teen, on the autism spectrum, non-verbal. Their experiences in the last 15 years led Mary to pursue advocacy at its maximum level and share the many lessons learned with the upcoming number of parents raising children on the spectrum.

But, the main goal is to educate future teachers about autism and what their children actually need.

From what I understand, in Ghana (or the United States) there are no University courses educating about the academic and social needs of students on the autism spectrum. This is where Mary and her Special Mothers come in.

These super heroes have surpassed the  boundaries of bureaucracy and nepotism and have convinced academic leaders to open the doors to offer workshops to future and current teachers — yes, parents educating teachers to be about autism and learning how to learn — regardless of behaviors and countless challenges the diagnosis presents.

I mega applaud them. They have succeeded.

University settings in Ghana acknowledge they need to transmit a variety of messages to the future educators of their country. They also realize autism prevalence in their classrooms and the lack of trained educators. They realize they do not know what autism is all about and it is advantageous to work with those surviving it every day.

Say it with me… The PARENTS!!!

Why do I write about this?

I will continue to write to all universities in the USA requesting similar projects become a part of the curriculum of education.

These experiences shall determine how prepared teachers will be when reaching the classroom and realizing that 10+ of 25 students are capable of learning  but need to be taught differently.

Right now, the United States must replicate projects like the Special Mothers Project in Ghana.

What have I done?

Below find the letters sent to the Departments of Education of various universities in Florida.

Only one university responded – UCF.

We have not had the opportunity to meet.

I urge all of you to send similar or completely different emails to these individuals. They need to hear from all of us.

Changes will only take place this way. Books and researchers cannot be the only way future educators shall learn about autism and its realities.

We the parents shall always be a part of this equation.

 

———- Forwarded message ———
From: YADIRA CALDERON <racayadi@gmail.com>
Date: Thu, May 3, 2018, 11:26 PM
Subject: Fwd: My daughter speaks… Teachers in Florida…
To: <Brindley@usf.edu>, <dnull@usf.edu>, <mbrownell@coe.ufl.edu>, <ggood@coe.ufl.edu>, <pamela.carroll@ucf.edu>, <wsecada@miami.edu>, <heithaus@fiu.edu>

 

Greetings

Representatives of Education in Florida

I have a simple request…

Please read this email carefully.

My daughter and I are ready to meet with you to discuss the reality of many in Florida’s schools.

Our basic need…

Better training of future teachers.

What is being taught and highlighted does not reflect what the system is and prioritizes or what the actual needs of the students are.

Particularly, students with a variety of diagnosis who need Multisensory methodology so they can be taught how to learn.

Many parents end up investing in tutors outside of the school system in order to see our children reading, writing at grade level.

Additionally, teachers to be need sensitivity training to avoid situations like the ones described below.

Yes, I am the kind of parent the school system does not like because I give less praise and do more complaints.

My daughter and her needs represent money to the school. These funds are not properly used and federal law is being violated.

But you know this.

I welcome the opportunity to meet.

Thank you for your time.

Yadira Calderon and Thomais Moshopoulos

Palm Harbor FL

Read about us here…

Www.autismhappykingdom.com

I was a featured guest in a WEDU PBS broadcast

Wedu.org/autism

 

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The Community needs information!

As I have said many times… My daughter was diagnosed with autism in a time period where access to information was unlimited (if anyone chose to!).

January 2011 was that month when I began to research about autism — what it could be, how to deal with it, what will the future hold. I found that a lot of the scientific information was overwhelming. The material from academia read too cold, as if they were talking about aliens. Information from therapists somehow always felt as if they were selling something. Testimonies from parents were gut wrenching and too sad.

I took it all in. I read as much as I could. I focused on what I could handle (financially and physically) and understood.

Nowhere did I find a detailed explanation then, why did my daughter within a month changed drastically and was not the same happy, fun, full of laughter kid she was.

This is my daughter now   https://m.youtube.com/watch?v=Df-TLSVHfp4

This was her reality in 2012    https://youtu.be/vfcRxgTZVHk

I kept reading tons more.

We were in Greece then. Light was shed by a Ph.D. in Neuro Linguistics. She was sharp and objective. But no clear direction.

Other assessments by therapists and organizations working with kids on the autism spectrum did not make sense or offered hope.

The support from the tribe in Puerto Rico — family and friends  — opened the door to see two developmental pediatricians. Both said – – Autism is medical, address the medical issues and your child will come back!

I wondered what they meant. They provided basic scientific info. They both said — read a lot, learn, be patient, not everyone who says they know about autism, actually knows what they are talking about.

And I read and read and read. Social media became my best friend as I filled a void  – emotional and social.

The more I read, the quicker I understood what the doctors in Puerto Rico said — not everyone knows what they are talking about —  What I was living with my daughter, her needs as a kid with a diagnosis had nothing to do with the material being shared by the press, by academia, by the scientists.

I decided to trust my instinct. Prioritize her needs and how to incorporate her into real life without hurting her or others.

I left Greece July 2012 and returned to the USA seeking the supports she needed. Many of her needs have been fulfilled by existing services. At the same time, many of her needs were not covered by existing services and I proceeded to act accordingly.

Her medical issues were many — dysbiosis, immune deficiency, mitochondrial dysfunction, Pandas, Pans, SIBO, etc. With Medicaid – I did not find an easy way to address these and seek better health. I pursued alternative medicine to address most of these issues. Details in a future blog!!!

Nutrition:  From the get go, we were told – nutrition must change. Blood work was done, confirming she was gluten and casein intolerant. An elimination diet was done — she did not eat eggs, bananas or rice for three years (she could not handle it). Trying to introduce new foods was torture due to sensory issues. We stuck to basic clean nutrition – potatoes, sweet potatoes, chicken, steak, she ate broccoli thank goodness, gluten free bread and tons of olive oil Once in a blue moon, a papaya smoothie was accepted. She still has foods she will not eat. Little by little she’s trying new stuff – last week she tried calamari and chicken wings!!!

Therapies:  We only paid for private occupational therapy in Greece (we found a recent OT graduate – we trained each other).

She received occupational therapy at home for 6mths thanks to Medicaid.

A psychologist came home for 6mths thanks to Medicaid (I was struggling with potty training and she was 5).

At school they gave her basic OT, basic Speech therapy which then became language therapy as she began to talk.

We paid for one year – one session per week –  an incredible tutor who used multisensory methodology and taught her how to read at almost 9 years old.

Day to day functional skills — I read tons (science and practical). I created our own therapy lifestyle actions and steps. Everything we did was therapy. Every game played fulfilled a therapeutic need she had. Every social interaction supported the existing gaps.

Has it been easy? Not at all.

Has it been frustrating? Many times, yes.

What are the rewards? Too many… My child is back (see videos below).

What is the greatest lesson? What I’ve done, how I’ve done it – not everyone does it. Stay close to like minded people. Help others.

Be resilient. Be patient. Don’t pay attention to the nay sayers. Breathe. Be ready to sacrifice. Let love guide you.

 

Biggest lesson:

If your child has been recently diagnosed and you’ve been told your child will never say I love you, your child will need to be institutionalized — Leave that office immediately and look for another professional.

If you have been told there is hope, there are many therapies and resources — listen closely, get ready to act, don’t stop. Find or create your community, you will need it.

Without community we would not be where we are. Social media included!!!

Find and create your community.

Yes, I must repeat it!

************************************************************

Below find videos and links to our news…

 Some of the countless videos we have…

Dec 2010 – massive regression —
 July 2011 – 1mth after diagnosis was confirmed and began nutritional change, giving supplements
https://www.youtube.com/watch?v=Nfi0VGZDIJM
Dec 2011 – repetitive behaviors
https://www.youtube.com/watch?v=reTiQuy-UGk

2012 – semi apraxic language, not knowing how to hold things properly 

 https://www.youtube.com/watch?v=csbOUvaqGiA
https://www.youtube.com/watch?v=mlJq27UZbUI
2013 – not capable of socializing, interacting with other kids, seeking danger
https://www.youtube.com/watch?v=yZNk8KPDn8o

May 2016 –  Empowering Moments
https://www.facebook.com/specialbooksbyspecialkids/videos/750678288367487/

Aug 10, 2017 – First day 4th Grade
https://www.facebook.com/yadira.c1/posts/10103196423608604

Sept 2017 – Surviving Hurricane Irma
https://www.facebook.com/yadira.c1/videos/10103269090054464/?permPage=1

November 2017  – interview with a local reporter promoting her book!

Events I’ve organized:

How to keep teens/adults safe?   https://www.facebook.com/events/295726114270619/

A reading to share emotions   http://autismhappykingdom.com/index.php/event/a-reading-to-share-emotions-the-story-of-thomais/

Special needs and marriage   https://www.facebook.com/events/462401544158549/

Benefits of Therapies and Nutrition   https://www.facebook.com/events/249138882246966/

Autism and Legal Matters   https://www.facebook.com/events/1721731438136957/

Autism and Employability   https://www.facebook.com/events/192420104495454/

Autism in Film!   https://www.facebook.com/events/981683005219491/

Autism Awareness is Everyday   https://www.facebook.com/events/1069008736477255/

Film Screening – Just Autism… No Panic Right!   https://www.facebook.com/events/1492697921025014/

 

TV appearances:

Featured guest – WEDU PBS broadcast – Autism Town Hall Meeting – Breakthrough to Hope – wedu.org/autism

More news here

 

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AUTISM REALITIES

We know all about autism awareness.

We want action. Life with autism is 365 days, 24/7…

These are various posts  I shared in social media. They reflect the reality of many families. For many it’s been the same or worse for 10+ years. The media rarely reports on these matters.

Do share!

Continue reading AUTISM REALITIES

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WEDU PBS Autism Broadcast: Yadira Calderon Is A Featured Guest!

I thank everyone who is making these opportunities possible.

Town Hall — my intervention, segments from Autism and Employability parent panel —   min. 23:28 – 29:04 and min. 48:38 – 49:14

Webcast – min. 4:04 – 4:39