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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!

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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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When I was 15! – LinkedIN

LinkedIn celebrated its 15th anniversary… Congrats…

They requested people write what they dreamed, thought about when they were 15.

I shared these thoughts!

 

#LinkedIn

#WhenIWas15

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The Ambassador of Autism Tourism!

My daughter wants to travel. She wishes to discover the world. She says all the time, you went to China and you did not take me… not fair!!

We have read posts about families raising children, teens and adults on the autism spectrum who have succeeded planning trips. Yes, even with autism on board they were capable of enjoying a vacation. Above all, not allowing the diagnosis control the dynamics.

Here is our effort. We must share what we are learning and enjoying.

I am aware not everyone can do what we do, how we do it. The purpose here is not to compare since we have something to learn from all of you, I firmly believe that. The purpose is to share how we accept the awesome and the challenges of our day to day. Above all, how we seek quality of life.

Enjoy the latest posts…

Ambassador of Autism Tourism

Real Practices, Solutions

Practical Advice – What works for us

NYC Here we come!

Conquering NYC and Autism

Visiting the American Museum of Natural History

How Autism Friendly can NYC be?

Emily = Dakota = NYC = UN

Is Tampa an autism friendly city?

 

What are the future. dream locations she wishes to visit? Read this:  Art Inspires the Ambassador

She loves to draw. She is very original. She has not been to these places. She may have seen pictures of these places. It is her interpretation.

Questions, suggestions? Email:  autismhappykingdom@gmail.com

 

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I HAVE AUTISM! ACCEPT ME…

Thomais has autism. She can now speak – after a massive regression in Dec. 2010.

As time passes, her prowess with language and body expressions is obvious and beyond enjoyable. At the same time, her message is clear, concise and beyond real.

I HAVE AUTISM… ACCEPT ME!

Thomais wants to be acknowledged, accepted, understood, respected – she wants to belong.#Autism can present challenges. The rest of the world needs to hear from those living it, to better understand what it can be about.Find out more about Thomais here: www.autismhappykingdom.com#twominutewonderclip

Posted by Autism: The Happy Kingdom on Thursday, April 12, 2018

 

She wants to be acknowledged, accepted, understood, respected – she wants to belong. #Autism can present challenges. The rest of the world needs to hear from those living it, to better understand what it can be about.

This was Thomais’ reality in 2012… behavior crisis that could last 2 hours… https://www.youtube.com/watch?v=vfcRx… It is no longer the case… Now we celebrate her!

Find out more about Thomais here: www.autismhappykingdom.com

#twominutewonderclip

NOTE: I am aware not every family can have their child communicate the way Thomais does. We have been there. We survived the not knowing or understanding. May Thomais’s words help those around you understand what your child/teen/adult could be experiencing.

 

 

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SAY IT WITH ME – WE WANT ACTION NOT #AWARENESS

Last April I wrote this… AUTISM REALITIES

It saddens me to confirm, progress is not always a reality in many households.

Parents are being told to light it up blue, to pay for walks or to use a puzzle piece to show awareness towards autism.

These meaningless symbols do not represent actual needs. These meaningless symbols do not create opportunity to enjoy quality of life. These meaningless symbols keep parents in a circle of false hope as autism continues to challenge everyone’s existence.

Autism is not easy. Autism is complicated. Not everyone understands autism.

Economics, politics, science, philosophy and all the forces of the universe have us in this conundrum and we the parents do what we can to the best of our abilities.

My thoughts this year:

We want action NOT #awareness
We need #mediainclusion
We need real options, steps to follow to seek quality of life…

Don’t dare highlight blue lights in April when…

A parent tried to kill her child with #autism
A teacher verbally abuses a student
School districts violate federal law
Law enforcement is not 100% trained
Bus drivers and teacher assistants rape girls
30% of marriages end separated or divorced
Moms have #PTSD and #Depression due to lack of support from doctors/therapists/academia
Academia is behind in thought process and suggestions how to live/handle/manage the diagnosis

Doctors diagnosing still tell parents there is no hope, this is how your child is going to be and will end up in an institution
Ignorance and fear reign rampant

Insurance companies limit or do not cover the wide array of therapies that can help achieve quality of life

Teachers to be do not receive appropriate training prior to working with our kids!

Individuals with severe autism are poorly served by the organizations claiming to support their needs
Poverty reduces the possibility to seek quality of life – parents are not given the opportunity to learn about self-entrepeneurship or become acquainted with their rights
Per the CDC – now, 1 in 36 kids have developmental disabilities
and tons more…

Talk to my daughter and I, we have tons more to share… We do not demand a perfect world. We simply want things to improve and we are ready and willing to be a part of the process.

 

THE EYE (12/2017) by Thomais V. Moshopoulos

This creation is the result of a question asked to my daughter – now that she can talk —

I asked: “What do you see?”

She answered: “I used to see rainbows”

I asked: “Do you still see rainbows?”

She answered: “Not anymore”

I asked her to draw what she saw and this is the result.

 

Read:  THOMAIS MEDIA CHALLENGE