Little Einsteins

Hello everyone. I hope everyone is having a great holiday season! Throughout 2019 I’ve seen my mother work very hard with Anjali in order to improve her performance in school, and specifically in the subjects of Mathematics and Reading. This has resulted in Anjali scoring 99% on a mathematics diagnostic test. The journey to this accomplishment by Anjali is what I want to share through this post. Every child is different Aryan, therefore what could you possibly tell us that would help improve every special needs child? This might be a question you have regarding this post and something that I had to consider as well. It is true that Anjali’s academic journey has and will be completely different from that of any other special needs child you may know, but I believe there is an important lesson from Anjali’s experience that could help anyone else in her position.

I’ll start from the beginning. My mother was working very hard with Anjali at home and helping her work through old arithmetic and phonics books I used to solve as a kid. Writing with a pencil was even a goal for Anjali in her school’s IEP. Therefore it is clear that a lot of effort was being put in to improve Anjali academically, but her progress eventually plateaued just like her swim lessons (make sure to check out that post). This frustrated my mother, as her effort towards this cause had stopped producing results for quite a while. Due to this, my mom decided to turn to outside help.

This is one of Anjali’s math books. This is something that we bought before Anjali started Kumon lessons.

This is when Anjali started Kumon lessons. This post is not sponsored or an endorsement for Kumon or any tutoring company. Many families with special needs children may not be able to afford such lessons, and it is absolutely not needed to pay for one. An idea that I think can be taken away from my mother switching Anjali over to Kumon is that any parent or guardian helping their special needs child learn may need to reconsider a different direction or method of teaching at some point in time. This is exactly what my mother did, and a two-person support system, one being my mother’s teaching at home and the other being of the Kumon tutor, helped Anjali elevate her learning significantly ahead of what was being taught in school. This was also the point where she scored 99% in the math diagnostic tests I was talking about earlier.

This image was linked in an excellent Great Schools article about the eligibility of your child for free tutoring , which is an alternative that should be explored rather then paying for classes when looking to improve your child’s performance in school. Source: https://www.greatschools.org/gk/articles/free-tutoring-no-child-left-behind/

What’s the next step? This is a question a parent tutoring their special needs child at home will have to ask after they see a large jump in progress. In the context of Anjali, the answer to that question would be continuing work with her reading skills. This brings me to a conclusion of these thoughts. With my mother’s hard work with Anjali as an example, I would like to say that every special needs child has potential not only academically, but in any activity in general. The key to helping them progress in that field is to be patient, be persistent, and find a balance between those two ideas. A change of direction or academic system, like Anjali’s switch to Kumon, may also be needed. Even after all of this, there will always be room to improve, with Anjali’s weakness in reading/writing skills as an example, but the key for academic progress with a special needs child will always involve hard work, patience, and support.

State Services

Hello everyone! This post is regarding something that I thought of a few days back. Every day when I get back from school, Anjali is typically in the middle of her ABA session. It was only recently that I found out that many family members of special needs children may not be able to say the same thing. This made me realize how I took this service being provided for a family member for granted, and also got me curious about how services are in other states.

Three main steps in ABA therapy according to Autism Child Development Center

To start off, I wanted to share the rankings of how states and areas fare in providing services for special needs. According to an Autism Speaks article, the areas providing the best services include “greater New York, Los Angeles, Chicago, Cleveland, Philadelphia, and Boston metropolitan areas.” If we look at it from a state-by-state perspective, a Disabled World article finds that the order for best services state-wise is “1. Wisconsin, 2. California, 3. New Jersey, 4. Ohio, 5. Missouri.” What determines this order? If we were to go off of the Autism Speaks article, only high-income metropolitan areas provide proper services for special needs individuals. Yet states like Ohio and Missouri, which rank “36th” and “37th” respectively in income according to a survey by the U.S Census Bureau, crack the top 5 in services provided for special needs, as shown in the Disabled World article. Then what truly is the reason that helps these areas succeed in providing these services? As it turns out it, this is purely a matter of lawmakers prioritizing this initiative.

Perhaps the greatest factor in determining the quality and scale of services provided in a state are the insurance laws passed by states concerning special needs services. The same Autism Speaks article shares how “Five of the 10 ‘best places’ are in states that have enacted autism insurance reform (24 states, in total, have enacted laws). The other five states have bills that have been endorsed by Autism Speaks or have legislation pending introduction.” Clearly the states providing the least for these individuals are the ones not prioritizing state insurance laws that can enable these services to reach individuals that need them. The lawmakers that believe home services aren’t needed for special needs children, are the people I believe are the least educated about the need for professional therapy for the progress of a special needs individual as well as a break for the guardian of the child. Experts also agree with this notion, as Patricia Wright, National Director of Autism services for Easter Seals, argues that “services are not a luxury, they are a necessary service that allow families to successfully keep a child with autism in the home environment versus institutional care, and increases the overall wellness of all family members.”

Clearly the lack of special needs services is a major problem facing many families across multiple states in America, and making a change in insurance laws might be the first priority of action in fixing this national problem.

Job Opportunities

I vividly remember last year when my mother shared the news that one of the sons of her friends, who also had special needs, landed a job at a local Dominos Pizzeria. This led me to think of many questions. Is a longtime and stable job possible for Anjali as an adult? What industries are more considerate than others? Have any corporate giants thought of this possibility as well? These are the topics I will address with this post.

Being the child of two professionals working in Silicon Valley jobs, it was no coincidence that I first wondered if many of the big tech companies employ or run programs for adults with special needs. Through some research I was happy to find out that some do run such programs. Perhaps the biggest one of these companies is SAP. Since 2013, SAP runs a program called Autism at Work. They claim “the program taps into an underutilized talent source, reducing barriers of entry so qualified individuals can fully develop their potential. Autism at Work employs over 160 colleagues and in 13 countries” (SAP). I must admit, I find the number of total people hired from this program to be slightly underwhelming. Yet the bigger conclusion from this still stands of how a large firm, such as SAP, has actually pioneered in this field, which is something that should be given due credit. Perhaps the biggest impact of this program is that SAP now builds products that are accessible “for everyone, including and especially people with disabilities, to access and use technology and information products. [They have] long made this a priority and strives to make our products more accessible” (SAP). This explains why hiring of special needs individuals in all industries is so important, as they provide feedback, a second opinion in stages of development, and a perspective for products that has never been given before, since so many of these industries don’t or can’t think of products or solutions that are easy to use for the growing community of special needs individuals. This void will only be filled by more employment and feedback from this community.

SAP Autism at Work Overview. Source: https://www.youtube.com/watch?v=RBIiRb8RUn4

Through my process of researching for this post, I had a couple of topics I wanted to cover. Should I also write about Microsoft’s program? Should I cover the opportunities in the retail industry? Though these are commendable programs, we still need to acknowledge the truth. The companies/industries I have named so far mostly provide these opportunities at an extremely small scale. That’s why I dropped all of those topics for the sake of covering this one: Autism-Focused Businesses. Verywell health writes in June of 2019 how “more young adults with autism are finishing school and struggling to enter the workforce. At the same time, more businesses are discovering the benefits of hiring autistic employees. These two factors, together, are spurring the growth of small businesses built around the strengths of autistic workers. So far, more than fifty such businesses have sprung up around the United States.” One of these businesses is SMILE Biscotti, found at multiple locations in the Phoenix and Dallas metro areas. This business was started by “ Matt Resnik, following his graduation from high school in 2013. SMILE stands for Supporting My Independent Living Enterprise, and was created to help Matt and others like him, who are impacted by autism, make advancements in life skills development, social connections and pathways toward greater independence . . . In 2016, SMILE welcomed Jon as a licensee and SMILE Biscotti DFW was created. To date, Matt, Jon and their coworkers have sold over 200,000 SMILE’s . . . Now, Matt, Jon and many others like them are being afforded the opportunity to succeed” (SMILE Biscotti). SMILE Biscotti is a wonderful example of how many small businesses are anchored by a workforce of special needs individuals, thus proving that many of these individuals are capable of creating their own financial base straight out of high school, and fit perfectly into a workplace environment.

Matt Resnik, Founder SMILE Biscotti. Source: https://www.smilebiscotti.com/about-smile

In closing I would like to say that all businesses, including small businesses and tech firms, can benefit from larger employment from the special needs communities. Individuals with special needs can complete that job with great passion and provide a fresh perspective on how to improve the product to better suit customers from special needs communities. If you know any individual with special needs who is thinking of getting a job, please take time out of your day and help them research. There are many opportunities from various industries (the Verywell health link I mentioned earlier is helpful), and if they keep looking they will find the perfect industry and niche for themselves.

Swim Lessons

Hey everyone! Summer is in full swing and so are the outdoor activities that come along with it. These obviously include sports, camping, or swimming. The latter of these is what I wanted to talk about today, as the process of teaching my sister how to swim is something that we have put a lot of effort into and ongoing. Almost all the credit for working towards this endeavour has to go to my mother who persisted in taking Anjali to lessons, buying needed equipment, and staying patient in her development as a swimmer. It’s no small task!

Anjali first started attending swim lessons around the time I was done swimming and moved onto other sports. The swim school I was going to has an extensive history of producing olympians and had a world-class facility. Included at this facility were classes for special needs children. I highly suggest at least trying swimming for any special needs children in your family, as it is an excellent energy release, and can possibly even develop into a passion for the child!

These were two major reasons that pushed my parents to enroll Anjali in these classes. Her development as a swimmer was very slow, which we completely expected. We had a rather realistic timeline for her growth as a swimmer, as we understood that a special needs child of such a young age will take a few months to grow accustomed to water, let alone learn to float or kick! She started off well in the classes but eventually her progress plateaued. My mother was starting to run out of patience, as Anjali wasn’t focused at all during the classes. Despite showing promise in a few of her classes, we eventually realized that this class was not going to work for her, as her progress was extremely minute and underwhelming.

The only option my mother had now was to take her out of those classes and take a more hands on approach for the situation. Along with Anjali’s classmate and his parent, my mother decided to start private classes for her. This involved having someone assist the teacher in the pool, in order to get Anjali to stay focused for the whole lesson. Private classes are currently ongoing on for Anjali, and she has benefited from them, though time will tell if these classes can be sustained in the long run.

The moral of our experience with Anjali’s swim classes is that persistence and patience is the key for involving and helping a special needs child at swimming, or any other extra-curricular activity. Such activities are excellent for a special needs child, and it is crucial to have the child try a few of them, but not pressurize them if they take time to develop the skills needed. Through patience and practice they will eventually show promise and growth with the activity. Who knows, maybe it can even be a hobby or profession they take into adulthood?

ASD Diagnosis & Affect on ASD Rate

According to the CDC “About 1 in 59 children [have] been identified with autism spectrum disorder.” For a family member of a child a under the Autism Spectrum, such as me, these new reports are deeply upsetting and scary. I can only imagine the shock and sadness experienced by those parents whose children have recently been diagnosed under the Autism Spectrum, as was the case for my parents when Anjali was diagnosed. These reports also formed a few important questions in my mind. What is the diagnostic process like, and are there any recent changes? What could be the reason for these rising rates of Autism Spectrum, and does the diagnostic process play a role?

Data stated in paragraph above shown fully in this graph. Source: https://tinyurl.com/y5mcqxwk

First and foremost, I want to share the multiple components of the diagnosis process, and the recent changes in the process. The initial component of the diagnosis involves the parents or the child’s pediatrician identifying symptoms of ASD (Autism Spectrum Disorder). According to the National Institute of Mental Health, symptoms may include “Making . . . inconsistent eye contact, unusual tone of voice, getting upset by slight changes in a routine, etc.” If the child shows multiple symptoms, their diagnosis process moves onto the next stage. This stage involves regular screening during “Well-Child” checkups, provided by the American Pediatric Association.

Additional evaluation ist then conducted in this diagnostic process. A team of ASD diagnosis experts, often times including the child’s developmental pediatrician, a child psychologist, and a speech-language pathologist along with other professionals, conduct a series of tests and observations with the child and their behaviour. The child is put through a collection of cognitive thinking tests, tests for their lingual ability, and observing whether they can independently conduct day to day activities (i.e eating, drinking). “ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders,” (NIMH) which causes doctors to run additional examinations in order to rule out any other causes for ASD. These examinations include blood tests and hearing tests.

A breakdown of three levels of ASD. Source: https://abcautism.com.my/what-is-autism/

Finally, I want to talk about how this diagnosis has changed in recent years, and the possibility of these changes affecting the rate of ASD. In 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM) was updated. Due to this revision, patients who were diagnosed under more specific conditions, such as Autistic Disorder, Asperger’s Syndrome, and Pervasive developmental disorder not otherwise specified (PDD-NOS), are all now classified under ASD. These leads one to questions whether the addition of these conditions to the group of ASD cases has increased the rate of cases overall?

Hopefully this post helped you understand the diagnosis of ASD, thus helping you gain a better perspective on the condition as a whole. I strongly encourage all of you to learn more on this topic, and the possibility of the ASD rate being affected by this diagnosis change.

P.S. This is my first academic/research related post. These type of posts are intended for those readers who would want a look into the medical side of ASD and other special needs, and these post have a much more formal and academic tone. I shall release one such post every month, alongside a post sharing my family’s personal experiences. Feel free to contact me and provide any feedback.

Vacations

Hello everyone! Summer vacations are right around the corner, so I want to use this opportunity to explain how vacations unfold for our family. Our planning for vacations is drastically different, given Anjali’s condition. Families with special needs children, such as mine, have many unique and odd experiences on a vacation. This post will cover some of ours.

My family’s preparation and packing for vacations is different and much more extensive. We have to be mindful of Anjali’s special diet, hence often need a kitchen at our destination. For example, my sister was following a gluten-free diet a few years ago. This required us to pack food like rice and other non-gluten items for our trip. Besides catering to Anjali’s diet, our packing contained many items to keep her engaged during long drives. One such item is a CD player, and a large collection of Barney CD’s, as well as many books for Anjali to read. These items are absolutely necessary to keep Anjali engaged during road trips, such as when we drove to Los Angeles to go to Disneyland. Perhaps the most important items we have to keep are items that cater to Anjali’s sensory needs. Examples of these include straws, stress balls, and crunchy snacks.These experiences are just a small glimpse into the extensive packing our family has to do, in order to keep Anjali comfortable during a vacation.

Another factor that plays a role in our vacations is how the limitations of Anjali restricts the limits of our family’s vacation as a whole. One example of this is when we traveled to Yosemite National Park. All of the specifics of our trip, including where we stayed and our agenda for each day, was designed in order to fit Anjali’s limits. We could not stay at a cabin in the valley, which sacrificed an easier commute to many viewpoints. The viewpoints themselves were only the ones that were accessible by road, as hiking was certainly not an option.

Some of you might be wondering why I have only covered the obstacles of our vacations? It is true that the required preparation and the limitations on our travels can be frustrating at times. There have also been times when we failed to meet her needs or did not consider her endurance during these trips. Those moments sometimes have led to Anjali responding with embarrassing public meltdowns. Despite all of this, I would like to finish by talking about the most important aspect of our vacations with Anjali. That would be the many wonderful memories we have created with her. Let me refer back to the road trip that required excessive packing. The first memory our family has from that trip is Anjali gazing out into the passing landscape of Highway 5, not the long hours of packing. At Yosemite National Park, we remember Anjali enjoying the sounds of the Yosemite river, not the long commute we had to enter the park each morning.

Many of these memories include instances when Anjali surprised us all with how much enjoyed the outdoors. Our trip to Lake Tahoe revealed how Anjali enjoyed playing in the snow. We were pleasantly surprised when Anjali insisted on treading through shallow waters at Zion National Park. This shows how many children like Anjali will forget their limitations, and simply enjoy the moment. Through these beautiful moments and surprises, Anjali taught us how we can stop worrying and enjoy the moment. Just like her. In conclusion, vacations with special needs children, like Anjali, require different preparations but still create the same wonderful memories.

Introduction (11/26/18)

Hello everyone! My name is Aryan Dwivedi, and I am currently a sophomore at Lynbrook High School, in San Jose, California. My sister Anjali is 8 years old, and she is under the Autism Spectrum.

Throughout the years, our family has adjusted in many ways and learned some valuable lessons, all for the sake of providing a strong, loving, and supportive environment for Anjali. We have gone through many unique experiences with my sister. There are many ups and downs, road bumps, and emotional moments when dealing with the development of a child with special needs, such as Anjali.

This brings me to the purpose of this blog. I want to use this platform to share the day to day lifestyle of a child who has special needs. Through this blog, I hope I can spread awareness regarding the massive changes family members implement in order to cater to a special needs child, which is often an important dynamic that goes unnoticed. Such children have multiple facets to their personality, and I plan to share some of those interesting aspects of special needs children, such as Anjali. This blog is also an attempt to familiarize and educate people on the rapidly growing condition of Autism Spectrum, and other such conditions.

I plan to write about a broad range of experiences and unique instances. My blog topics may include something as meaningful as my sister’s interactions with her therapists, or something as small , but unique, as my sister’s mealtime habits.

Overall, I hope these experiences of my sister and family help you learn more about special needs children and their families.

Sharing My Story

Thanks for joining me! This blog is dedicated towards sharing the interactions and experiences my family and I have with my younger sister, who has special needs. You will even find some academic/research posts about changes in the ASD field as a whole.

“Every child is gifted. They just unwrap their packages at different times.” – Unknown