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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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TOP 40 THINGS ABOUT THOMAIS

Yes, cognition, learning, sharing, demonstrating knowledge acquired, remembering, writing about it, understanding her place in society, acknowledging likes and dislikes… and being funny!

These are all a reality now.

I, the parent, did not ask for this exercise. She started it by herself. She did not ask me what to write. She’s been surprising me all over again.

I know my daughter but to realize she knows herself is priceless.

How did she achieve this? By exposing her to a variety of experiences. By allowing her to fail. By not allowing autism and its challenges to dictate what will occur at home or in the community.

In less than 2 hrs, she wrote 17 facts about herself.

Some highlights:

  1.  Thomais was born in Greece.
  2. Thomais is a loud farter plus a belcher.
  3. Thomais can weigh up to 82, 83 or 84 pounds.
  4. Thomais loves animals of all kind.
  5. Thomais always wants to go to Scotland to see the Loch Ness Monster.
  6. Thomais is a good dancer and twerker.
  7. Thomais loves to sing her favorite songs – Better when I’m dancing; Roar; Stitches; Nothing holding me back; Poker Face; When I’m gone; I can see a rainbow; Bad romance; Diamonds; Waka-Waka
  8. Thomais is the best prankster.
  9. Thomais loves to watch videos about the three Cunard Queens – Queen  Mary 2, Queen Victoria and Queen Elizabeth (all cruise ships)
  10. Thomais loves to talk about the R.M.S. Titanic over and over (headaching to everyone)
  11. Thomais loves to eat green beans, broccoli, banana, apple, chicken with  bone, white rice, macaroni, ice cream, whip cream – with chocolate chips, chocolate chips, M&M’s.
  12. Thomais hates to eat burger, egg plant, zucchini, meat balls.
  13. Thomais met Dakota Fakota Fanning in NYC.
  14. Thomais is Shawn Mendes #1 FAN!!
  15. Thomais sometimes says ain’t when she’s singing.
  16. Thomais mom is sometimes so BOSSY!
  17. Thomais hates homework.
  18. Thomais really misses her dad.
  19. Thomais has lots of BFF’s — E, G, L, M and K
  20. Thomais dad is funny, fund and kind. Her mom is over protective, bossy and sometimes nice.

 

She’s 10. Presently, the world is all about her.

I keep reminding her others must be included.

This is a great activity for any kid.

It is an opportunity to keep the conversation going and avoid surprises.

More soon. Enjoy!

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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