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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!

AUTISM REALITIES

Act today! I know you are aware…
Reach out to those around you in similar circumstances…
Autism survival is tough, we can’t do it alone…

Read on…

My respect to the families doing their best with their adults and the severity of the diagnosis = in diapers, self aggression, sick, weakened immune system, encephalitis, OCD…
Read this father’s reality…. Share his story, he seeks help!

 

AUTISM REALITIES
Wandering… the biggest fear in any household raising/protecting/caring for/surviving a child/adult in the spectrum.
They move fast, stealthy, quiet, they may or may not know what they are doing.
At the grocery story, my daughter who is apparently aware of consequences, she moved away for 5 seconds (right before I told her I need you by my side as I’m paying at the register). 
I breathed, did not scream, just called her name and she was right by the entrance of the store.
She called out for me and there I was.
I hugged her, then gave her the third degree. I reminded her of the negative consequences. I reminded her I want her safe and it is a tough job and she must help me.

We survived it. She is fine.  12hrs later I asked her to write 5 sentences (see the pic). 

Her thought process in the raw and to me obvious we still have tons to keep working on.
My respect to her reading coach – last year she was not able to do this!!! Something super good out of this…

My respect to the families that have children/adults that are non verbal. Your home does not have to become a jail but safety is #1. There are steps to take and I request you use the resources available in your community, online – no need to do this alone.

Community — this is hard, we need help.

Resources:
http://nationalautismassociation.org/reso…/awaare-wandering/
http://awaare.nationalautismassociation.org/
https://www.angelsense.com/?utm_source=bing&utm_campaign=

 

AUTISM REALITIES

Many parents heard these exact words from many professionals in the field… still occurs today!

Parent, if you’ve ever been told this fallacy – report the doctor to the American Academy of Pediatrics 
American Medical Association (AMA) 
American Academy of Neurology (AAN) 
American Academy of Child & Adolescent Psychiatry 

This is not professional. It is unacceptable. Not every case is the same. Not every family is the same.

 

AUTISM REALITIES
sit down plz!!!
Neurofedback therapy can cost $250-300 per week!!! OUCH…
Eval/Assessment $500-1000+ – not included!

Most times, not covered by insurance!

 

AUTISM REALITIES
Love, expressing it in different ways
IT’S STILL LOVE AND NOT DIFFICULT AT ALL

 

AUTISM REALITIES
Don’t you ever doubt… I have the pleasure of knowing Robin and Ann Millan — the utmost respect for both… Be inspired, don’t doubt, research, act…
Read thru this… all of it…

https://drive.google.com/file/d/0BxP7-Kc4isLORXlLWXROcXRFRWc/view

http://www.autism-believe-future.com/

 

 

AUTISM REALITIES

Sad outcome – Missing Teen in the spectrum was found dead

 

AUTISM REALITIES

Power of unconditional love

‘Cause, we the parents make it happen!

AUTISM REALITIES

Watch the documentary – My Kid Is not Crazy

A search for hope in the face of misdiagnosis

MY KID IS NOT CRAZY IS THE CINEMATIC, PEDIATRIC EQUIVALENT OF BRAIN ON FIRE-MEETS-INFECTIOUS MADNESS. A FILM THAT WILL CHANGE THE WAY WE LOOK AT MENTAL ILLNESS FOREVER.
-CHICAGO NOW

CLICK HERE: RESOURCES FOR PANS/PANDAS

 

AUTISM REALITIES
Many children/adults wake up after 1-2hrs of falling asleep — with sweaty head, night terrors, screaming, sleepwalking, jumping, in a different realm, speaking gibberish, some aggressive — 
It is scary. As a parent, we feel no control…

Tonight first time in 6+ yrs, my daughter’s, now very brief wake up session – head not as sweaty and she fully verbalized a thought – I guess she was dreaming — she was shaking, she looked concerned — 
She said: “I just released the sea creatures… so they can be happy”
I told her – you are being a great explorer. Kissed and sang to her and she fell asleep —

This is huge… a clear thought… full of meaning – 
She may not remember this tomorrow AM. I’ll ask her…

 

AUTISM REALITIES
I am a featured guest in the Autism Town Hall Meeting produced by WEDU PBS in Tampa. Sooo honored!

* Event I organized – Autism and Employability – great resources here!

Release

AUTISM REALITIES
Event I organized Autism and Legal Matters
* Many resources in the link– If you have a teen, please start reading about this now! Do not wait!

AUTISM REALITIES

Autism, anxiety, overstimulated senses = reality = afraid/not being able to enjoy a movie

 

AUTISM REALITIES

The day my child stops going thru these outrageous situations… 
yes, the kind that proves awareness is not real… I will stop these posts…

One day to promote awareness is not enough… 
#autismawareness everyday!
Help my kid forget this ever happened! Be her voice… share…
https://youtu.be/W5_ft493gLo 
 No teacher should ever scream!

 

AUTISM REALITIES

Interaction with Teacher Chris – Special Books by Special Kids —

Thomais is diagnosed with autism. She quickly hid inside a cabinet when I entered the room.

Instead of forcing Thomais out I sat on the floor and talked to her and a beautiful interaction followed.

Videohttps://www.facebook.com/specialbooksbyspecialkids/videos/750678288367487/

 

AUTISM REALITIES:
DONATE TO OR PURCHASE GOODS FROM PEOPLE/ORGS. REALLY, REALLY HELPING FAMILIES WITH KIDS IN THE SPECTRUM!

I make this request because I’ve heard horror stories of families that have been fleeced, used, manipulated by unscrupulous individuals who sought to gain from desperation and need. Simply, they saw an opportunity to easily profit and took it. Buyer beware!

AUTISM REALITIES 
Domestic violence occurs in many households… Talking about it it’s not easy. This mom with two boys with special needs finally opens up.
After so much pain, she’s alive, healing and building her happy kingdom.

Lalita Tooley is a Mexican mother of two special children, Connor, her eldest son who was born with down syndrome and Jack, her youngest son who has autism. Like any other woman, her dream was always to be able to form a family with the man she loved, the father of her children, but that dream disappeared after the birth of her second child.
Tooley claims that her husband could not bear to see that his two children were disabled children, which led him to take a despot attitude toward her, which later became physical and psychological abuse.
Eight years after being a victim of domestic violence and a restraining order against her former partner, Tooley is dedicated to caring for her children and other children with special needs, as well as giving support talks to empower parents with special children .
According to statistics from the National Coalition Against Domestic Violence, in the United States every minute, 20 people suffer from domestic violence by their partners, which is equivalent to more than 10 million victims a year.

 

AUTISM REALITIES

Best message I ever received from two developmental pediatricians… Autism is medical they said!

I did not know what they meant then. Like minded families have guided our path…
No more teeth grinding. No more monthly sickness. No more barking cough. No more grumbling tummy. 
Still mild sweaty head. Still sensory issues.
Major improvements in behavior I mean MAJOR!!!
Read a lot. Ask questions. Address the medical issues and your child will come back. 
I keep at it…

TACA

AUTISM ONE

 

AUTISM REALITIES

So proud of my friend E and her daughter M. —

M. picks her eyebrows, armpits and more when OCD is raging.

She’s not a kid anymore. She knows what she’s doing yet she cannot control herself.

Parental power in action —

They tell M  –  you hurt yourself, we are sad, we help you. If you keep picking your hair we’ll put the phone in the trash.

M reacts by turning her head.

Time passes, M picks her eyebrows.

Mom E throws phone in the trash.

Major reaction from M and verbalizes awareness of what she’s done.

She’s asked: What will happen if you pick your eyebrows?

She answers: Phone in the trash.

Every family finds a solution to their reality.

Tough love works. It is not easy. It takes time to see results. But it works.

 

AUTISM REALITIES

Video of my daughter after arguing, crying, losing all calmness — she insists 9+9=0 because that is what ST Math says.
She needs to be taught how to learn!!!

 AUTISM REALITIES

A mom writes:   My 19 month old is non verbal and a head banger. I am awaiting his evaluation but gosh this is so hard…he screamed for 3 hours straight today while knocking over everything he can and hitting himself. His anger is worsening by the day and it’s just me and my son all day everyday while my husband is off and home about 1 day a week. Does anyone have any calming mechanisms? It seems like all he does is scream and rage all day nothing I’m doing is helping him and Ive cried so many tears. Anyone go through the extreme anger fits with a toddler?

MY NOTE:  A 19 month old without a history of psychiatric issues in the family should not head bang, should not have anger fits. I have learned, there are medical issues behind these behaviors. There are medical solutions to address it. Early intervention is key!  Around 19 mths, my daughter also had a brief period of head banging and screaming fits at 11pm-1am. It did not last long thank goodness.

Interesting info here:

Treat Autism CA

Autism Research Institute

MEDICAL COMORBIDITIES IN ASD = one of the best sources!

AUTISM REALITIES  —  

April 19 at 7:05am ·  2017
Things are.much better now 
Health and behaviors 
Tons to do
Parents do your homework , there are many ways to address the medical symptoms our children endure, suffer from

April 19, 2014 · 

The helplessness.. impotence. .. lack of control… sadness. .. frustration… etc…  We experience daily with our children and the diagnosis of autism is sooo overwhelming. .. 
Give me the good days… the bad ones I say… F .. k U autism!!!!!!

Action now… I demand answers to address the medical issues affecting my daughter’s behavior

AUTISM REALITIES

Disabled girl denied class trip to Disneyland

Family was told bus did not have wheelchair lift

MY NOTE:  We experienced the same last year —

One more time, I witness a reaction to my pointing out my kid is not included, my kid is not accepted. It is too obvious and I notice.  My daughter needed to be with her classmates and other 2nd grade students on that stand, belting it away, being a part of a school event. Mrs. Urban, thank you for letting me know now that she’s very advanced in your class. That is a real Mother’s day present. Yet, she’s not a 4th Grader, she’s not in choir. She’s a 2nd grader who participates in two different classroom dynamics because that is what she is needs: a least restrictive environment.

You told me 3+mths ago that Thomais had changed so much, improved so much and you were very proud of her. Yet, the opportunity was missed to show your pride as a teacher and confirm that  United We Soar! as the school proudly exclaims every time.  There is no soaring… There is no united and all of you know it. School and district administrators and the FLDOE are fully responsible for this mess; because there is no directive guaranteeing these absurdities will not take place in 2016.

But, they keep happening!

 

AUTISM REALITIES

TABOO TOPICS – SEXUAL EDUCATION, SEXUAL ABUSE, SEXUAL MISCONDUCT

We must talk about it… Parents must become the first line of safety in their kids’ life. A lot must be read. Parents must accept what their child/teen/adult can or cannot understand. Request a social story from the organizations that are supposed to help. Above all, remain cautious and communicate to the best of your abilities the concept of body awareness, physical safety.

Read this — Two child sex offenders explain how they picked their targets

I did this video last year – Talk for the Voiceless Now!

SAFER SMARTER KIDS

 

AUTISM REALITIES

In Florida and other states

1. YOUR child may be removed from school
2. Transported to a psychiatric facility
3. Held for up to 72 hours WITHOUT YOUR CONSENT OR KNOWLEDGE!

Click the link, read, act:

PROTECT YOUR CHILDREN WITH 5 SIMPLE STEPS!

And tons more takes place…

Many families celebrate the huge and small successes.

Many families suffer in silence.

Thank you for your support. Share our stories throughout the year, not only in April!

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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

 

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About Sesame Street, Inclusion, Reality

The media is overwhelmed, reacting to the inclusion of a muppet with autism. If it only was that easy in real life…

@Ellen DeGeneres tweet is reflective of the vague words used by most media outlets – –  People make people feel included I dare to add, not a muppet!

The effort and expense used to create this new character is immense. Many fortunate individuals are a part of this project. I am very glad parents of individuals in the spectrum contributed.

My issue with the new characters lies with the words shared by my daughter in the spectrum. As soon as she saw the picture (I swear I had not made any comment to her or she had not heard me say a thing about it) she says:

 “Ridiculous! How can a frog have autism?”

She insists:  “Autism is not scary!” And reminds me she wants her own reality shown!

 

And she is correct. Autism cannot be portrayed by a muppet. Autism must be portrayed by individuals in the spectrum – the happy moments and the nasty ones. This is the one alternative being shown to kids. Believe me, it cannot be the option that validates the needs of millions of people. Why? It is not real.

Enough with wanting to sugar coat autism. There is no way Julia’s presence (a muppet) in Sesame Street will guarantee an increase in empathy and tolerance from those not surviving a many times brutal diagnosis. Yes, it is brutal because most individuals do not have to deal with a meltdown, torn clothes, sleeplessness, loss of cognitive skills, not being taught how to communicate, being 30 years old and not having bladder control – for starters. Julia I doubt will touch upon these nasty, easily ignored and misunderstood realities. I hope I am wrong.

When producers and media executives are ready to have a serious conversation about autism, behaviors, including individuals in the spectrum in their shows — my daughter and I are here. We have plenty of ideas believe me.

In the meantime, we shall continue to share our message. Many times this involves demanding inclusion as people, not dolls, muppets, etc. — EVERYWHERE!

 

  • Each picture included – even with the smiles – represents a challenge overcome. Meltdown included! TV must show this and more!!

   

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About the #media and its reporting, portrayal of individuals with disabilities

The #media and its reporting, portrayal of individuals with disabilities (obvious and non-obvious) is dismal.
Reporting of events having to do with pets or gory stories are prioritized over 15-30 seconds of reality from a disabled perspective.

 

** FACT: Stories with roles based on a disabled individual are not a part of TV shows/movies – As the The Ruderman Family Foundation White Paper states – 95% OF CHARACTERS WITH DISABILITIES ARE PLAYED BY ABLE-BODIED ACTORS

** FACT: Out of 8 events I organized – promoting acceptance, inclusion, awareness, parental empowerment — 2 received media coverage (greatly appreciate support from Natalia Rodriguez and Gaby Romero)
https://www.facebook.com/JustAutismNoPanicRight/events/…

How to correct this?

  •  Don’t only report the tragic stories
  • Marlee Matlin, Temple Grandin cannot be the only individuals with disabilities that will be referred to by the media – every community has its stars and they must be a part of the discourse
  • Use language appropriate to the story — NO PITY!
  • A weekly segment (TV and Newspaper) reporting the ins and outs of disabilities in all communities – NEEDED (reporting must include a novice or trained individual with a disability; thus opening the door to guarantee employment and fulfill ADA)
  • CREATE a campaign – nationwide – clearly stating – Special Needs are not scary, Autism is not scary, Down Syndrome is not scary, Cerebral Palsy is not scary,etc… The masses must hear this clear and bold message from the news and the artists that appear in People Entertainment Tonight. Until this happens the disability community will remain ostracized and discriminated…
    Enjoy my daughter telling Teacher Christopher Ulmer – Autism is not scary. Autism is a beautiful heart deep inside you. https://www.facebook.com/specialbooksbyspecialkids/videos/750678288367487/
  • TV shows/Movies – disabled role must be played by a person with a disability (i.e.: my daughter created a video requesting Disney they create a TV program with a princess with #Autism – and she wants to play the role of the Princess)

As Danny Woodburn (actor) states – – “… complex and pervasive problem that will take a long time to remedy. However, it is imperative that we take steps in the right direction immediately with a few concrete practices.”

My daughter and millions are ready.

 

The Ruderman White Paper: Employment of Actors with Disabilities in Television
http://www.rudermanfoundation.org/…/TV-White-Paper_final.fi…

From the White Paper:

The Argument We ARE Making

Instead we believe that it is absolutely unacceptable to have 95% of cable and broadcast characters with disabilities played by actors without disabilities. It is a matter of social justice to have a large segment of our population authentically represented in the mass entertainment that is television and scripted, dramatized stories. It is necessary to create an environment where actors with disabilities have access to play characters with disabilities. It is also necessary to reduce stigma surrounding “invisible” disabilities such as mental illness. Only by having actors who are open about those disabilities will we slowly create a society that doesn’t shun or shame a vast segment of its population. We have to tell stories about people with a variety of disabilities and we have to be fair in representing them accurately. Only then will we have more realistic stories that reflect our society. We will not choose a number and say that this is how many characters with disabilities need to be played by actors with disabilities. But we are saying that it’s about time we start ensuring that it’s more than 5%.

 

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