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AUTISM AND MARRIAGE (PARENT PERSPECTIVE)

By Yadira V. Calderon and S.A.

I was too innocent or dumb to realize what happens on TV and the theater does not always happen in real life.

Disney, Hollywood and social media have distorted my perception of real life.

The princess marrying the prince after he rescues her and living happily ever after is not true for many.

I’ve shared my thoughts with a friend and we stress the fact that highlighting the delusion of living a Disney life is VERY different from the perceptions of what represents a good stable marriage. Yes, what many consider the obvious… that world of smiles, comprehension, agreement, dreams being fulfilled, knowing that it takes a lot of work, full support at all times and commitment.

We both agreed, those who do not have a good understanding of the commitment of marriage – with all its possible definitions – may resort to the fairy tale world presented by Disney, Hollywood movies and social media. And we have seen how resilience is not sought and their lives are full of stress, they are in debt and they are never happy with the simple things life can offer.

On the other hand after living in 6 countries and traveling to another 27, I  met many couples who live the ups and downs of marriage, parenting, never ending love, commitment, responsibility, full support.

I always asked:

“How do you do it?”

They answered:

“We made the decision to be together. To be there for each other. No matter what.”

I  told them: “My respect. Keep us inspired. Your story is just like most Disney movies, but real.”

I am relieved I experienced this marvel. I consider this a feat and it should be admired and respected. I got an introduction to the basic tools that may be needed to have a successful marriage.

I could not say anything else. I did not grow up with a mom and a dad raising us. I did not grow up witnessing a husband and a wife making it happen, being at ease with each other, even in the midst of an argument.

Yes, I had discovered that stable couples also have arguments. They have the maturity to confront the situation. Handle the differences. Respect each other’s opinion. Just get along.

And I did not have the opportunity to experience this…

Now… let’s move forward. Let’s add key elements to the princess and prince story…

It’s time to spice this up!!

We all know a couple has strengths and weaknesses.

The problem is… both insist on not accepting the good and the bad of the relationship. For many reasons, their weaknesses become the priority in what is supposed to be a partnership. They keep comparing their life to the Disney movies. Plus, now they have children.

The water in the pot begins to boil because unlike the Disney or Hollywood movies, their children have special needs.

And they quickly discover…

Their children are not accepted by the majority of the population.

Their children are not integrated in schools.

Their children are not considered worthy of an education.

Their children are bullied.

Their children add stress to the marriage.

Their children are not cared for by both parents.

One or both parents do not accept the children with special needs.

One of the parents becomes abusive towards the partner or the children.

One of the parents wants to keep living the single life.

One of the parents rejects the commitment and responsibility.

One of the parents ignores the needs of the family.

One of the parents seeks sex, comfort and care outside of the marriage.

One of the parents leaves.

One of the parents ignores whatever good examples of stable marriages he/she may have witnessed growing up and insists on living life like Disney, Hollywood or social media dictate.

In some families, the parents decide to stay together, live separate lives and present a “united” front for the children and society while experiencing horrendous moments – harmful for all.

What I’ve described above is happening in countless households raising children with special needs.

This is happening in all socio-economic groups. Money and race do not guarantee marriage stability.

Not even age can provide assurance that a couple will remain together.

No doubt, there are many families that have both mom and dad caring for and living life regardless of the challenges presented by the diagnosis.  But in the world I live in, these are becoming less and less.

These are difficult times we live in.

These are times where common sense does not prevail.

I have not seen one single family succeeding in reuniting after going through therapy.

I do not have answers to this dilemma.

I read the scientific research and I find it unrealistic, not fitting the unwritten equation of what life is about in a household raising/caring for a child/teen/adult with severe autism, with behavior crisis, aggressive, wearing diapers (teen and adults), not being capable of handling social situations, sick, with organ failure, not having access to a variety of services that could provide some respite and worse, not having the financial resources to pay for respite.

And we all know, there aren’t enough organizations or funds that could actually support the high numbers of families needing help.

What to do?

Join me and break loose your dependence on Disney, Hollywood and social media.

Shatter their myth of marriage…

Demand shows and movies that will provide answers…

Shows that will make you say…

“Wow, that’s exactly how I’ve lived it. It’s been tough. I’m surviving. Others have it easier or tougher than I do.”

How can you help?

Let’s keep the dialogue open.

Let’s support each other.

Help us create TV or movies that are relatable, realistic, at times crude, not distorted…

I had many questions and I organized a parent panel –

Special Needs and Marriage (a parent perspective)

Read the useful posts in the link above.

 

Art by Thomais Moshopoulos –  Weddings of Love – 2018

My daughter is living the consequences of our family separating six years ago. It has not been easy.

She can now express how she feels about it. Her art always tells me what she wants and how damaging Disney and Hollywood can be — it is not always like this!!  But, I remain calm.

I explain to her the basics of relationships. She’s 10 after all and she has tons to learn. I believe in keeping her safe, loved and exposed to a variety of experiences that will in the future help her make wise decisions.

I’ll keep trying.

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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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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

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Girl with autism – now verbal – shares abuse in school

My daughter Thomais can now speak — 6 years ago she could not!

This instance is a classic. Why? Because assistants and a teacher treated her without kindness and respect two years ago. And for the past 6 months she’s capable of expressing her memories in vivid detail.
Every month she goes through OCD and a PTSD episode and she repeats the same details over and over. She cries and asks why did this happen to her.

As a parent I say: ENOUGH IS ENOUGH!
Another parent states: “every single day there is more lack of empathy. I am totally disgusted”

A combination of factors allow this abuse to take place and our children pay for it.
My main message: existing training prior to being hired is not effective, it cannot be Academia based. It has to be training led by parents.

But in order to get approval for any kind of training of teachers, politics have to be involved.
They will be hearing from us soon!

This is her video from 2 years ago – as she revealed her experience.

Great research here:

Sources of Information—Who Are the Best Reporters?
Due to their core deficits in communication, emotional
understanding, and expression, children with ASD are often
poor reporters of their own psychological symptoms
and under-report problems on symptom rating scales
(Mazefsky et al. 2011; White et al. 2012). Clinicians have
come to rely on the reports of parents or other observers…

 

Parents to Parents Panel: How to keep our teens/adults safe?

How to keep our teens/adults safe?

Our adults with a disability – mild or severe — what are all of the areas to consider to guarantee parents and community are doing their all?

Safety must always be #1

How can you, as a parent, avoid abuse, neglect and exploitation?

How can you avoid financial exploitation?

How can you avoid emotional abuse?

Join us. Let’s brainstorm and discuss this serious matter.  A Sheriff from Pinellas Sheriff Office will be present to answer questions!

 

The event is organized by three of the featured guests of the Regional Emmy nominated WEDU-PBS broadcast:

Autism Town Hall Meeting – Breakthrough to Hope ( watch it here: wedu.org/autism ):

Ann Millan
 www.autism-believe-future.com

Yadira V. Calderon
 www.autismhappykingdom.com

Filomena McDonald
 Gulf Coast Autism Assoc Internet: http://gulfcoastautism.org/