Concepts like faith, politics, emotions, behavior can be interpreted in so many ways… An individual in the spectrum can wait months before they can express the meaning of the ideas/messages received.
In this instance, my daughter in between climbing trees, collecting branches and running… unannounced, drew her interpretation of Jesus on the cross with a long branch. She was so concentrated, she was immersed in the process. I could not speak to her. She would not answer my questions.
She used her feet and fingers to clean up the sand and redo what she did not like.
Her question as she wrote the word PEACE?
People did not love Jesus and they killed him?
As a parent, what do I say? I can’t over analyze the response. She’s almost 9. I can’t impose my thought process, belief.
I said: “That’s a good question and I think you know the answer.”
I have not imposed religion to her. I share faith. I share being empowered by doing good deeds. I remind her we must be thankful. We work hard.
I hope she will continue to use art to express meaning and find answers to the questions her mother will not always know what to say.
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.
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…
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!
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.
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.
sit down plz!!!
Neurofedback therapy can cost $250-300 per week!!! OUCH…
Eval/Assessment $500-1000+ – not included!
Most times, not covered by insurance!
Love, expressing it in different ways
IT’S STILL LOVE AND NOT DIFFICULT AT ALL
Don’t you ever doubt… I have the pleasure of knowing Robin andAnn Millan— the utmost respect for both… Be inspired, don’t doubt, research, act…
Read thru this… all of it…
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…
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!
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.
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…
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.
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!!!
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.
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 sooooverwhelming. .. 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
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!
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.
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!!
Last January 19, 2017 at the Palm Harbor Library (FL) more than 35 families from Tampa Bay and beyond responded and confirmed the need to hold meetings with content created by, led and with meaning to parents.
Reality is, all families would have benefitted from the messages shared. The universal message of parental empowerment, commitment, dedication, restlessness applies to us all.
In the case of families caring and sacrificing for individuals in the autism spectrum our encounter was even more meaningful because nothing like this had happened before. A panel with significant information on Employability took place — organized/led by parents, for parents.
Three local heroes shared their experiences – how they created new paths, ways, raised their voices quite loud to tell the world — “my adult has a place in your world. Work with me, listen to me and it will happen.”
Lo and behold, they made it. Why?
Because, WE THE PARENTS MAKE IT HAPPEN!
Nothing can stop the might, inventiveness, realism, care of a parent who knows the existing rules may not always apply to our kids. Yet, rules are rewritten all the time!!
Parent, rewrite your own rules — Guide, Educate, Support and Train an Adult in the Spectrum! NOW!
Yes, at 8/9 years old doing volunteer work is extremely important.
But wait, at this age kids should be in parks, riding bikes, some may say playing computer games is part of being a kid these days. But T. and her friend S. were taken to the Thrift Store, part of the Homeless Empowerment Program in Clearwater.
T. and S. know each other. They play great together. They leave each other alone. They drive each other crazy. They are kids learning about life. They are kids and in most instances, they’d be regarded as one of the bunch. It is wonderful and as parents, we are so proud.
The kids wondered why did we have to volunteer. We explained in simple terms – We want to give back and be thankful for everything that is good in our lives because others are not as fortunate. Explanation accepted.
While volunteering, reality is more than obvious and we moms start realizing that 10 years from now our kids would not survive 5-10 min in any job. We were not there to play and personal interests confirmed how much work was to be done (sorting clothes and placing them on hangers). Once the personal interests were no longer thrilling and the realization that actual work is expected, this is when our duty as parents became really fun. Looking for entertaining explanations to keep them focused was a live rendition of every reason we’ve heard moms say for hundreds of years. Let’s sort by color, by specific item, do this number of items and we’ll do this, we have so many minutes left, that’s enough I need you here right now. And you can imagine the rest.
Sensory needs, literal comprehension, specific interests, lack of focus, a new situation and space, the temptation of the site; these are realities our kids and many others must learn to address, overcome, manage, inquire with others who’ve been thru the same and above all, ACT NOW! Our kids must learn to act now. We the parents must act now.
Job training programs targeting the specific needs of anyone – with and without a diagnosis – is a reality that needs to be worked on immediately. Proactive parents will not wait for the government to create these training programs. Proactive parents will work with training centers to provide services based on specific needs. Training centers will welcome parental participation.
This was a very successful first time. This will be a long road. We’ll be back and make it as fun as we can. We’ll be sure our kids will gain valuable skills while being real, engaged and loving life.
More updates soon…
NOTE: Jan. 19, 2017 was a wonderful day in Tampa Bay FL — The Panel Autism and Employability took place. For the first time, parents presented incredible stories on how they achieved working with, training and obtaining employment for their adults in the spectrum. Plus, an adult in the spectrum shared the lessons learned while creating his own business as a fitness trainer.
The volunteer experience was presented by one of the panelists. Being wise, we took her advice and gave it a try. And our eyes were opened one more time… Thank you FM!
As a parent, I realize I must constantly open more doors to assist the process of understanding what life can be about… With a diagnosis like autism, on any given day, it can be so challenging to help your offspring understand the meaning of different situations we can witness. Today was a breeze. Today was all about being connected and wanting to be a part of the world.
Our presence at the Women’s March in St. Pete FL was so enriching, exciting.
Our sign said:
REMEMBER: AUTISM IS NOT SCARY!
WE NEED MORE +MEDIA COVERAGE
My daughter was all ready to ask for pictures, to raise her megaphone voice and say it – Autism is not scary!
97% of those present, who engaged her, more than agreed. High fives were exchanged, thumbs up and pictures were taken. Or she squarely requested, people read my sign!!
The greatest affirmation we were at the right place… the number of people who acknowledged their first hand understanding of our message because they had a child, relative in the spectrum. Some were there, others could not or were not able to handle a crowd, the over stimulation, etc. And they understood and they thanked us for being there, for our message. Others simply agreed and said it is about time someone said it.
Powerful words from a young teacher (special needs classroom) approached us, took a picture and said: “I am so proud of you bringing your child. Sharing your reality. Above all, living life and confirming having a child in the spectrum is not a death sentence.” I smiled, thanked her and we moved on because more people wanted cutie’s picture.
I asked Thomais what was her favorite part of the day and she said everything.
Thank you to all the individuals, families, mothers, fathers, husbands, children present. This event should be held yearly!
Our day ended perfectly with the powerful voice of a local singer, delighting us with his version of “Imagine” by John Lennon —
I am obsessed with traveling, discovering and understanding life. I became the editor of a trade publication for the baking industry and visited most Spanish speaking countries. I did Logistics for the cement industry. I taught American Government in China. Everywhere I went, as a tourist or as a professional, I sought the opportunity to interact with families, experience commitment and going beyond the expectations to achieve that goal. I saw my education and curiosity as the means to an end.
Six years ago everything was about to change and I did not know it. The drive, the push, the non-stop urge to climb Mt. Kilimanjaro or ride the Trans-Siberian train all became futile and senseless when my daughter regressed into autism from one day to the next. December 2010 forever changed my life and perspective.
The reality of autism in its beginning is nothing like the current representations in the media or what is taught by academia. Regressive autism is brutal, damaging and painful. My child was learning three languages, smiling, had eye contact, eating healthy and sleeping. In less than a month, it was all gone and the race began to figure out how to understand this unwanted newcomer.
Earning an income, traveling and building a safety nest for the future was no longer prioritized. The need to live minute by minute became the way to survive the meltdowns, being awake from 2 to 5 in the morning as your child screams for hours on end, vomits torrents of undigested food or hums incessantly.
Time passed and now that my child is in school I made the attempt to work 30-35 hours per week. The lack of flexibility from an employer is the biggest slap on the face. The extremes of autism do not exert control while I worked. The professionals that are trained to work with your child can only do so much based on the resources provided by the system. Since I had to work to earn a living and pay the bills, my child had to go to after school care. This is when the battle intensified as I moved from center to center seeking that committed organization that trains its employees, practices inclusion and acceptance.
When my child’s behaviors were no longer adequately managed by the care center personnel, I made the bold choice to quit the safe and steady source of income. I could no longer tolerate not knowing what triggered my child’s behaviors and not being there to reassure her it would all be fine. Mom is here and let’s work it out.
The hustling, surviving, living on a minimal income has been my peace of mind. I drop off and pick up my child. I create quality of life with very little. I know what is happening when she’s not in school.
As parents we should not have to make these choices. But this is not the world we live in. Becoming the parent of a child with special needs creates extremes in our existence. If you are not humble, creative and learn to seek the support of those who survived it, you shall create an environment of greater pain and suffering. There is no remediation. There is no therapy. There is no alternative. Sole reliance on self love and your inner strength will guide you in this path. If you did not know you had inner strength, find it quickly, your child will need you very, very strong.
I am so proud of the fact my child is happy, healthy and is learning to love life. Being educated, working minimal hours and receiving government assistance makes me a better person. This current sacrifice is the greatest reaffirmation of motherhood and love I can experience. I know this will not last a lifetime and I still want to climb Mt. Kilimanjaro with my daughter by my side.
Yadira V. Calderon has two or three part-time jobs (retail store, supports adults with special needs and translations/social media). She has a M.A. in International Relations and Diplomacy, speaks three languages fluently, has lived in 6 countries and visited another 27.
Yes, Yadira is looking for flexible, stable and rewarding employment opportunities!