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I'm a dad of a child with special needs and also a software data science engineer. I have a great interest in education, technology, and teaching and I also see a clear connection between all of them and how they can fit together.

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  • Kishor Voderhobli

Autism Journey to IEP|ONE with Nish

Updated: Mar 7, 2019

#autism #weareiepone #iep

I wanted to be more like Kristine, mom to Jacob Barnett or Eustacia, Temple Grandin’s mom. They believed in their children and they knew they were more than a label, more than a diagnosis.

Parents raising a child with autism have their own deeply personal story. Each parent and family have their own unique experiences, fears, doubts and concerns, but the more I learn about autism the more I realize how much we also have in common.


My name is Kishor. I'm a dad with two boys, Yash and Nish. Yash is your typical teenage boy making his way on his own path, pursuing his dreams and making plans for his future. Nish is different. It is troubling to imagine that he may not be able spread his wings and take flight one day.


As a parent, I have concerns about how Nish will develop and find his place in the world, the same concerns all of you have for your children.  He just turned thirteen and he is unable to communicate verbally, making it difficult for him to express his needs or his feelings, which is a constant worry.


Nish was diagnosed with autism nine years ago after he started experiencing regressions. We first noticed that he was regressing when he was only three. His speech was progressively getting worse, all of his words began to slowly fade away until he became wholly non-verbal. Eventually, he became lost in a world of his own.  His sleep pattern also changed. He now had difficulty falling asleep.


I am consumed with worry when I think about what the future holds for Nish. Will he stay with me for the rest of my life? Nothing scares me more than to think about what will happen to him when I am not around. I believe that it is the feeling of all parents of children with Autism and special needs.


As I’m sure you can all relate, that my journey into understanding autism has been a difficult one, one that has been fraught with confusion, fear, concern and overwhelming.



DIFFERENT, NOT LESS

Nish developed exceptionally well until just after his third birthday. No one in our family, none of our friends, nor his pediatrician noticed any symptoms of autism prior to that time. One specific occasion sticks in my memory. I remember him staring intently out of our window at a hummingbird drinking nectar from flowers, when I asked him if he’d like to go out and see the bird close up he responded, “I want to fly.” Looking back at that moment I realize that we experienced it differently. I just saw it as a bird drinking nectar from flowers, Nish saw it as more. Something different, something special, something deeper. His experience was different from mine, but certainly not less than mine in fact, I would argue that he experienced that moment more richly than I ever could have imagined.


When Nish was around three years and two months, we had just came back from an international trip when we first observed some changes in his behavior. He began to have difficulty forming words that he at one time spoke clearly.  His words were fading, he experienced difficulty with pronunciation, and soon became unable to utter anything but a single, three-word sentence: “open the door.”


We were all baffled by his diminishing ability to communicate, and now we began to see drastic changes in his behavior as well. He would frequently explode in outbursts of frustration. He had tantrums that would include running away, kicking, and biting. These tantrums were starting to increase in frequency, making it difficult for the family to go out in public. We felt confined to certain places during specific hours to avoid his triggers and minimize the number of people exposed to his extreme behavior, everyday things would prove impossible. Visits to doctors and therapists naturally became commonplace. As a parent, you want nothing more than to help your child, knowing there is nothing you won’t do to help, yet there we were, feeling helpless, feeling alone, watching as our child was fighting an internal war we didn’t understand.


After several long months of being unable to understand what was happening, we received a formal diagnosis: PDD Pervasive Developmental Disorder, ASD, a regressive type of Autism. I remember the day as if it happened yesterday. When the doctor explained that there was nothing we could do to help him, telling us to “go home and learn how to live with it", I felt as though time was standing still, as if the world around me came to a halt. Nothing made sense, what did he mean there was nothing we could do to help him? Hearing the doctor’s words  triggered a storm of overwhelming confusion and pain.


All we as parents want is to help our children become functionally independent and reach their highest potential, but we were given a diagnosis and subjective opinion that told us something different, we were told that our children will never be functionally independent or reach their full potential. To say we feel defeated would be an understatement.


Whether our children have special needs or not, we must do our best to discover their needs, interests, and abilities, nurture them, and help them create and pursue their dreams.

BELIEVE IN YOUR CHILD

I drew strength and the courage to persevere from those amazing parents that had been where I was and who found it within themselves to carry on and do everything they could for their children. I wanted to be more like Kristine, mom to Jacob Barnett or Eustacia, Temple Grandin’s mom. They believed in their children and they knew they were more than a label, more than a diagnosis.  Kristine was told that Jacob would probably never talk, never read, and most likely never be able to tie his shoes. Jacob is on his way to getting a phD in theoretical physics. The most important job we have as parents is to identify the abilities of our children and nurture them.



AUTISM, CHALLENGES

It took a couple of months after the diagnosis, before I began feeling the difference between the day and night again, not only did Nish's regression continue, he was also having difficulty falling asleep and experiencing nightmares that would frequently wake him in the middle of the night.  When he woke at night his adventurous side would get the best of him and we quickly realized what a hazard the kitchen can be! Between the potential for fire hazard, toxic soap, and power cables, the once seemingly harmless kitchen took on a new life of its own! Door locks became essential as he had the potential to walk outside and into the street at any moment.


As any parent of a child with special needs can tell you, the challenges never end, they start when they wake up and end when they go to sleep. Throw in the tantrums, therapy, lack of sleep and challenges at school and we go beyond exhaustion. Our entire life revolves around them and their behavior. The entire family had to pull together to support each other, balancing everyday life, a challenge that soon began to feel impossible and taking a break would cause us all to feel a tremendous sense of guilt.


The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion by 2025 in the absence of more-effective interventions and support across the life span. 

DATA SCIENCE FOR HELP

At this point, I felt that I was the one who needed therapy in order to function properly. I made it my mission to gather the best information available on my son’s condition in order to effectively help him and the family. We all needed to get some sleep.  So, falling back on my professional skills in data science, We resolved to gather the data ourselves. For several months we started recording most of Nish’s life and activities. Noting his exact eating habits, moods, playtime, and sleeping schedule I was able to generate a report that provided simple, yet extraordinary insight. We collected data for several months and found the consistent data points. We noticed that his sleep patterns were random.  Sometimes he would go to sleep at 8 PM other days at 11 PM or 2 AM. There were nights he was awake even until 4 AM, it was clear he was struggling to fall asleep. There was one data set which was very linear and consistent. It showed that whenever he woke up before 6:00 AM, he was able to fall asleep around 9:00 PM. For the past six years, our day starts at 5:45 AM, so after 9 PM we get a good night sleep.



AUTISM WORLDWIDE

Here are some quick facts and figures regarding the prevalence of autism

  • Autism affects more than 70 million people worldwide

  • It is the fastest growing developmental disorder.

  • International studies show that about 1 in 68 people have autism worldwide.

  • More than 1/2 of children with autism have one or more chronic sleep problems. 

  • Around 1/3 of people with autism are nonverbal.

  • Autism affects an estimated 1 in 59 children in the U.S.

  • The cost of caring for Americans with autism had reached $268 billion in 2015 and would rise to $461 billion by 2025 in the absence of more-effective interventions and support across the life span. 

  • More than 1/2 of young adults with autism remain unemployed and unenrolled in higher education.  

  • (Autism Speaks, Feb-13-2019, autism-facts-and-figures)



ABILITIES NOT DISABILITIES

If someone said to me, "What do you regret?" I think, as a dad, I would have done some things differently, to help my child. I regret the time and energy I spent trying to understand and “cure” autism, I have finally realized that is not possible. I would have used that time to understand my child better. I would have prepared myself to help him on his journey of constantly battling his challenges and frustrations by helping him express his basic needs. I would have made sure I understood him in a way that allowed me to meet his needs so he could have avoided some of his struggling and frustration.


Helping my son made me look at the world differently. It gave me my strength, and it made me a better person. Can I be thankful for it? Certainly not, but I am grateful for the power it brought to me to continue to move forward. I have come to view the world differently, and to understand human potential in terms of abilities rather than disabilities. Despite our family’s many hardships, I am grateful for this new perspective which has made me a more understanding father. Whether our children have special needs or not, we must do our best to discover their needs, interests, and abilities, nurture them, and help them create and pursue their dreams.


Individualized Education Programs (IEP) must accurately identify a child's individual NEEDS to provide the right SERVICES that will then result in real PROGRESS.

SPECIAL EDUCATION & IEP

School is an essential part of a child's life and is more so with a child that has special needs. Every effort must be made to understand these children so that they can begin to overcome their cognitive, communication, and social challenges.


Special education must be inclusive; it should be provided in the same school environment with other children in order for our children with Autism to learn to express and communicate with typical children around them. Our children with special needs must also have an education program individualized to them.


Individualized Education Program (IEP) is a federal mandate in most countries for providing inclusive special education for all children with special needs. I cannot imagine how a child with special needs can become educated and receive services for their needs without an IEP.


An IEP is the most important part of an educational program for a child with special needs, but it will be beneficial only if the planning is done right.  I am sure that for some parents who know their child's needs, IEP can be a great experience. For parents whose children have difficulty with expressing and communicating their needs, the IEP seems impossible, broken  and a destroyer of hope!


After many IEP meetings, I was able to determine that the problem is in identifying the real needs of the child, this makes it difficult to match the right services that can offer measurable progress. The problem is that no one can objectively understand children when it is challenging for them to communicate and express themselves.


Objectively identifying the abilities of each child on the spectrum is a challenge for most of us, but can it be done?



TECHNOLOGY

If IBM, Google, Amazon, eBay, and Microsoft can understand us without us speaking a word to them, why can’t we apply the same technologies of Artificial Intelligence, Machine Learning and Cognitive Computing to assist our children? If we can communicate and express ourselves on the web, text, WhatsApp using emojis, why can’t we apply the same to interact with our children with Autism and special needs?


Like all simple analogies, the reality is in the details. To change the deficiencies in the IEP, I would need to understand what Nish knows, identify his interests, cognitive abilities of thinking and reasoning, and understand his skill level in reading, writing, and math. This is important information to have before laying down an IEP or doing any type of educational planning for his future.



IEP|ONE ( www.iepone.com )

IEP|ONE​, “The Cognitive ​Companion for Children with ​Autism and Special Needs” will assist with finding the ​NEEDS of children with Autism which will allow the IEP team to choose the right ​SERVICE for the needs of the child so the child can make real ​PROGRESS towards their goals. Two years ago, I started developing the IEP|ONE platform using Artificial Intelligence, Machine Learning, and Cognitive Computing technologies by leveraging capabilities of IBM Watson, Google Visual Recognition, Amazon Rekognition, and Microsoft Cognitive Toolkit to discover the objective NEEDS of a child with Autism.


On this platform we allow our children to watch videos, play games and view pictures to find their cognitive abilities like reading, writing, math, problem-solving and thinking. As our platform learns more it serves more effective games, videos, pictures and challenges to our children, allowing us to better understand their cognitive abilities.


The IEP|ONE reports will discover the child's cognitive abilities, compare them with CDC standard milestones and identify a child's, interests, likes and learning patterns to be shared with the experts, therapists, teachers, educators assisting the child make the program more meaningful and helping the child reach goals.


The IEP|ONE Report can change the dynamics of the IEP meetings for children that are not understood, and the child’s education and socialization will finally gain traction. The reduced frustration of the child, parents, teachers, specialists and other caregivers will have a profound effect on everyone.

I am confident that The Cognitive Companion will help me understand Nish and many other children with Autism, so that we can help them spread their wings and take flight in pursuit of their dreams.


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Thank you!

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