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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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Interview with The Teen Magazine

So thankful for the opportunity.

Read here — Interview with The Teen Magazine –

An eye opener because my words in some circles of the autism world have caused controversy.

We are a very divided community for many reasons. I do not agree with the divisiveness and my messages will never have the intention to divide.

I am very clear that our experience is very particular. The results  and our experience are all based on the initial message received when Thomais was diagnosed.

One of the main reasons we are divided is because I received a very positive message.

Plus, the first time I ever heard about autism around 1998 – it was an eye opener.

I was in front of Temple Grandin (at a Poultry Processing industry trade show in Atlanta), listening to her passion and dedication seeking ways to make the slaughtering process more humane.

I was told I’d meet her and she had autism.

I said: “What is that”.

They said… “wait and see”…

All I saw was a more than capable individual, brilliant, being a professional.

And that was my first impression.

Years passed and it is now 2018 – I have a daughter on the autism spectrum.

I was told in June 2011, when she turned 3, that autism is medical.  Two developmental pediatricians told me I needed to address the medical issues and my daughter will come back.

I know many families are not being told the same — they are being told that’s how their child is going to be and not lead a productive life or they’ll never say I love you or they will have to be institutionalized.

I must note, prior to the diagnosis – Thomais was developing like any other child, growing, smiling, eye contact, repeating everything in 3 languages. That changed drastically December 2010.

I am sharing our story because our message is a valid one. I am not the only one receiving the same message.

This was Thomais’ reality April 2012… one of many behavior crisis’ that could last 2 hours.

Lo and behold… After many steps, sacrifices, sleepless nights and the support of many… Thomais has autism but she no longer lives a life where the diagnosis controls the day to day. She is a girl in every sense of the word. She is fun. She is bossy. She expresses her emotions. She is learning. She is discovering the good and the tough.

April 2018 – Latest video — I have autism… Accept me!

 Also, I worked in three middle schools and I interact with countless families whose children have every single characteristic of the spectrum.  I have been in both circumstances — a place where my child who was sick all the time, who could not function socially, I wondered why is this happening, how long will this last…
and a place where my child is living life, learning how to function socially and we can say, we seek quality of life.
Magic is not at play here.
Questions? Just contact me – autismhappykingdom@gmail.com

I insist… Divided we shall not remain…

What advice do you have for families surviving autism?
1. Go through mourning, punch a wall or stomp your feet. Stop mourning!
2. Talk to others who are going through the same. Do an initial comparison of what your child can or cannot do.
3. Read a lot, so much research is available. It takes time, so you must have to make the time. The more you read, the easier it can be to decided which path to follow.
4. Ask yourself: Do I love my child? Why do I love my child? How can love guide this process? How can I accept this new reality?
5. Create your tribe, yes, that group of people or that person you can go to and vent. Stay away from negative thinkers or those who do not know a bit about your reality.
6. Your days should become a play session. Make your child laugh. Allow your child to make you laugh.
7. Be patient– the biggest test ever!
8. Decide if you want to be a parent or an individual. If you can’t be a parent, em-brace what it means and do not wait to seek help as soon as possible.
9. Own every experience with your child (or children). Do not blame others, make a plan for every outing and be flexible!
By: Yadira V. Calderón, Autism: The Happy Kingdom

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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.