Month: October 2022

Categories
changemakersaathi parentsaathi

My Journey So far..

Getting your first born diagnosed with Autism- a lifelong condition which would require support of various degrees to deal with the day-to-day life is a daunting news for the first time parents to say the least.

Like thousands of fellow mothers, I too went through a haze in the initial years, with flurries of doctors, therapists, this test, that test, running from pillar to post, trying to make sense of life, and this mystery called Autism, trying to find ways and means to “get through” to my son Ammogh.

Yes, that is the name of my son- Ammogh which means Lord Ganesha or “the precise way of doing a thing”. Both the synonyms sounded like irony to me for neither hearing the ominous news of having your child labelled with a strange disorder felt “shubh” neither were we- as parents, able to figure where to begin in the first place, forget doing the precise thing!

Twenty odd years have passed ever since we got that diagnosis, and a lifetime of learnings which has enriched us as parents. In these years I realized that there is no end to the human potential, irrespective of any label- special need or otherwise.

For a person who could not sit still, eat on his own or hold a pencil, today my son has not only crossed all those milestones but is also learning to live independently with minimum support. As mother, I too have learned to be far more patient and compassionate to fellow human beings. I guess to do things precisely one needs to be persistent first:))

So, lets take a 360-degree view of our situation as parents of special need children.

What does a single mother of a special need child want? – Support.

What does an individual with special need want? – A peer group, opportunities and equal rights.

What does a family with a special need child wants from society? – Understanding, empathy and inclusion.

As a society there are gnawing gaps in what we as parent’s community expect for our children and what is offered to us, we are living on the margins and not at all happy about it. General ignorance, taboos, lack of good policies, governmental apathy, commercialization of education system which does not care in investing time on our children are few of the issues which can be rattled off at any given time. Stress is compounded by the lack of social, financial and emotional support.

But enough of that! For the list of woes is endless, so let us begin afresh!

I was always week in math but one equation taught in the school is still relevant to me which is – minus plus minus equals Plus!! I know that the challenges faced by our community are humungous and one can easily get overwhelmed by it! Creating support system for each other can bring a lot of relief . “दुख बांटने से कम होता है और सुख बांटने से बढ़ता है”

I realized very early in my life that in order to carry on this arduous journey I will have to build support system for myself as well as my child, so I started working towards it -one step at a time. By talking to a random stranger staring at my son, sensitizing the neighbors in the immediate vicinity, by writing on various forums, joining forces with fellow parents, forming groups, association, becoming part of the larger parent’s organizations, making my voice heard, by becoming voice for the voiceless. For I believe in one thing- if you do not get support then become support for someone and the universe will send someone for you.

Four years back with my husband’s steadfast support I founded a Trust called ALAP: Assisted Living for Autistic Persons with the purpose to look after persons with Autism who would require lifelong support in some way or other. Today we provide short/long term respite to the families in a residential setting, teach independent living skills to the residents, providing them with all kinds of opportunities for their individual growth. They have their peer group, an inclusive space set amidst the mainstream where they get to interact and engage with people from all walks of lives, they are very much “visible” and are contributing a great deal in sensitizing the world about themselves.

The ALAP mothers get together, go for lunches, let their hair down, are lot more confident as they too are equally involved in capacity building, of their children as well as each other’s. For inclusion we must reach out to each other within our own community before we expect anything from the society at large.

So, to build a community here are the baby steps that can be taken:

Look around and see if there are few parents in similar situations, form a group;

Meet regularly, share information, experience, resource, and knowledge;

Become support for each other, if need be, baby sit each other’s child, give respite to fellow parents;

Travel together, go for outings together as you will get the comfort of having each other’s support and understanding in a hostile or not so understanding environment, be ears and eyes for each other’s child. As they say -safety in numbers;

Invest in good support staff and nurture them equally well, for you will always need them more than your relatives;    

Seek guidance from senior parents, for they have covered more miles than you and their wisdom and guidance can make you understand your child much better;

The truth of the matter is that we cannot gulp life in one go, we must savor it sip by sip, assimilating, digesting it slowly. Yes, it gets overwhelming, I learned to take a break from the daily humdrum time to time, away from the daily stress and found my “me time.” In that process I discovered my own inherent strengths and rebuilt my life with new fervor.

I do hope my journey and my learnings resonate with you all in some way or other and you too discover your own super powers, for only a happy and empowered parent can build a steady future for his or her special need child.

More power to us all!!

Neena Wagh

Founder- ALAP: Assisted Living for Autistic Persons

Writer, Playwright, Poet, Filmmaker, Translator

Categories
parentsaathi specialsaathi

The Power of Small Steps: Our BloggerSaathi Journey

Yesterday, Ananth shared his first post as blogger saathi.

What can one blog post set in motion?

First, we decided to include blogging in our daily routine.  Writing a small amount daily is important for producing blog posts regularly.

While Ananth will write a small amount for his blog daily, we don’t know exactly how the writing process will unfold for him. We are now in a phase of continuous exploration, experimenting with tools and process for daily writing.  For example, Ananth started jotting ideas for his next post in Obsidian today.   Since he has liked using this note-taking/second brain tool in the past, we figured it was worth exploring it for capturing ideas as they come for preparing blog posts at a later date.

Our initial goal for targeted practice is to write 8 – 10 sentences daily.  The daily memory shares may or may not feed into the blog post for SpecialSaathi.  But the daily shares will build a repository that Ananth can use in future writing.

Growing the Six Cs

Connections: Shilpi is now another champion for Ananth encouraging to write.  She is supporting him by making him a part of the SpecialSaathi ecosystem.  Shilpi played an important role in bringing writing/blogging into Ananth’s daily routine!

Competence: Targeted practice develops skills.  Over time, we will identify and practice specific writing skills.

Coordination: Once Ananth starts blogging regularly, he will find ways to coordinate with Shilpi, me, and the readers of his blog.

Clarity: Over time, Ananth will gain clarity about the topics that interest his audience, and how best to present this information.

Choice: As he gains clarity, Ananth will be better able to choose content for his blog.

Conversations: I have interacted with many parents today.  These parents have read about a variety of issues that Ananth mentioned in his post.  They have asked me about different therapies and educational opportunities.

Becoming LIFESMART

We have taken a small step forward to becoming LIFESMART with SpecialSaathi!  Blogging is a way to Learn daily, share Interests with others, enhance Family interactions, and expand community Engagement.  Blogging can be a particularly valuable tool for neurodivergent individuals to communicate with others and to connect with people. Blogging creates SMART (Specific, Measurable, Attainable, Relevant, Time-framed) projects since we have a specific target for producing blog posts.

Week 1

Ananth started compiling his ideas in Obsidian. He started writing a few sentences daily at 9PM after we have finished other work for the day. Read his post here.

Week 2

Ananth added an Explorations section to list what we explored in writing this week. The information below is from his blog post. Read the full post here.

Explorations: My Journey to Blogging
  1. Ackerman A. 2016. The Urban Setting Thesaurus: A Writer’s Guide to City Spaces. JADD Publishing

My writing teacher Ms. Idania Cater, suggested this book. I have not used it for more than two years. Now, it is time to use it for writing my blog!

  1. I am using Obsidian (https://obsidian.md/) to record my thoughts daily. I build my blog post gradually during the week.
  2. Theater and writing: Since I had the opportunity to participate in RASA Day 2022 (https://rasaindia.org/), my mother and I talked about theater and the role of setting and props. Now, I can see why the Urban Setting Thesaurus suggested by my teacher is important. Writers must paint a vivid picture of the setting with words!
Categories
parentsaathi specialsaathi Story

My Brand New Ears and Other Tales

10/24/2022

My Brand New Ears

After my first MNRI (Masgutova Neurosensorimotor Reflex Integration) camp in 2010, I went to the Science Museum in Tampa. I saw a hurricane exhibit which was very noisy. I exclaimed that I had brand new ears!

But Diwali firecrackers and balloon pops in other celebrations continue to be a challenge. Even now, I use ear plugs during Diwali and birthday parties. Recently, I visited an inclusive living community in Chennai. I think that these inclusive living communities should find ways to deal with these issues. While neurotypicals enjoy bursting crackers, many autistics find the noise annoying and stressful. These noises bother me even after six MNRI camps and 10 years of Bharatanatyam. I wonder how other autistic kids and adults feel. 

10/25/2022

The Daily Mile

I vividly recall my walks in Weston, Florida. I have been going on daily walks since the age of 5. I used to walk everyday morning and evening with my mother. I remember doing math poems and stories on my walks.

This year, I enjoyed long walks were in London, Bergen, and Bengaluru.  In London, I was going on long walks by myself every day because my mother had to look after my nephew. Some days, I even went to have bubble tea with my mother. This year, we also had many scenic walks in Bergen. Now, I am enjoying walks in an apartment complex in Bengaluru. While I don’t like the sound of fireworks, I enjoyed going on a walk and watching fireworks with my mama and mami yesterday night!

10/26/2022

Homeschooling, Sleep, and Movement

In my kindergarten in public school, students had to sit at the desk most of the day doing work that was not very interesting to me. After I started homeschooling, I could start my day with a morning walk. I got a lot of movement throughout the day. When I was young, I did not sleep well at night, and I was not able to concentrate the whole day.  Sleep disturbance was one reason that I preferred homeschool. If I did not sleep well, I could at least move around, take breaks, and work at my own pace. In addition to walks, I also played twister, riding on the scooter, and other movement games in the porch. I also used to do little activities like setting the table to take a break from desk work.  I think lack of sleep could be one of the biggest reasons why schools don’t work for autistic children.

I started sleeping better after I started the HANDLE (Holistic Approach to NeuroDevelopment and Learning Efficiency) program. My sleep continued to improve with MNRI (Masgutova Neurosensorimotor Reflex Integration). One of the biggest gifts of natya is that now I sleep well at night.

10/27/2022

The Gift of Movement

In October 2022, I started Bharatanatyam classes with Mr. Ujwal Jagadeesh, a senior artiste and a senior faculty at the Ramana Maharshi Centre for Learning, Bengaluru. I have had a guru in Chennai for many years but needed one in Bengaluru as I may spend more time in Bengaluru in the future. Ujwal anna talks about the gift of movement. Moving different parts of the body is a precious gift. Natya teaches us to use every part of our body. Movement makes me feel cheerful, joyous, and happy! I am surprised that my coding experience is in Chennai and my dance experience seems to be moving to Bangalore. That seemed odd to me.

Categories
parentsaathi

I like to move it, move it.

It’s a known and established fact that movement not only helps our body but our mind too. It helps in building neural connections. Let’s revisit why-not Movement ? It

  • helps in carving physical strength,
  • builds neural connections,
  • increases blood circulation, 
  • coordinates our inner and outer body, gives a sense of self,
  • Improves learning skills. 

These are a few of the mainly physiological changes we see when we do some movements consistently. 

How we do movement ? We should start whichever way is possible for us. For me taking a walk comes natural, the fresh air just clears my overcrowded mind and fills me with renewed energy, for someone that could be a challenge. So, think of any movement, inside the house / outside in the park, whatever is possible, and do it consistently.

It doesn’t have to be a big physical activity, as simple as table setting is movement. The child has to move from kitchen to dining area to put the dishes on the table, then he has to decide on the placement of dishes/spoons etc. and that’s movement of ideas. There are 6 chairs but only 4 of us are eating right now, so, he/she has to decide how many plates and spoons to get? Of course, all of this comes with consistently working with them. But all of this comprises movement. And once they get better at it, they get the confidence to do more work.

We all want our kids to sit still and focus on whatever they are doing. But, we forget, how can a child focus on a table-top activity, when his body is craving movement. MOVEMENT BRINGS STILLNESS. We must have noticed how our kids keep moving to-and-fro, walk in circles, flap their arms. It’s because of they aren’t calm from within. Only movement can tackle chaos. 

We must bring movement in all aspects, and it should be a part of our Daily Rhythm. 

  • Talking about our day while taking a walk,
  • household chores bring coordination with movement, (table setting :: parent gives a plate to child, child puts it on the table)
  • singing and dancing brings rhythm
  • Indoor and outdoor activities (release physical stress). 

Doing activities together develops our  connection with our kids. I can’t tell you how much my body has become flexible since I started movement with my daughter. We dance, exercise, practice ADL together etc and I feel the fittest I have been in the last decade. That’s icing on the cake, what can a child ask for more – a fit and happy parent. 

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parentsaathi Resources Story

Eat ,Sleep and Repeat

Eat , Sleep and Repeat

So you read it correct, I am going to talk about food in this blog and to be more specific sensory food issues. These are very common in children and individuals on the spectrum.

Lot of us just can’t eat some kind of food, don’t you agree?

May be because you don’t like the sight of it

Or you don’t like the feel of it in the mouth or on the tongue

Or yet another reason , you just can’t bear the smell of that food item

Well sight of food, taste, texture are some of the contributing factors to an individual’s sensory food concerns or issue or aversions

Sometimes it is also how it feels on the fingers and a how it is presented in the utensil that can discourage the child to try eating the food.

So remember visual appeal plays a very important role in feeding the child. And that is why food decoration has become such a popular vocation around the world.

Having sensory food aversions will definitely result in the child not eating a well balanced and nourished diet and can affect the health status.

This will eventually lead to various deficiency. Now a days many kids are low on vitamin-D , vitamin- B12  levels in the body and this is a harsh fact to be aware of.

It is often confused that a picky eater could be having a sensory food issue. But this is not true

It is important to know and understand picky eating is not a sensory issue . There could be underlying oral motor issue at play.

This is when a child cannot use the mouth effectively for speaking , eating , chewing , blowing and making specific sounds. This issue arises when the brain sending a message to the muscles of the mouth don’t receive it or the message is mis-intepretated.

One thing I want to quote here that pushing the food ball from mouth to food pipe is part of oral motor development and oral motor function. Thus a picky eater should be evaluated for oral motor development rather than sensory aversions

Further sensory food issue needs to take into account these oral motor developmental milestones and must be ruled out. This will open the door that the child definitely resists certain food items because of sight, smell and tactile feel of it

Thus one must be always keep in mind whether a parent, therapist, teacher or educator that sensory food aversions are different from oral motor dysfunctions.

If you might wonder, occupational therapists, play therapist incorporate child led play therapy to modulate these food aversions

If it is found as a oral motor dysfunctions , then a speech therapist implements some oral motor exercises for the child to develop a good oral motor musculature and coordination to open mouth to bite , swallow and so on

In conclusion, I would say it is important to seek professional help when you face feeding challenges in your child. The professional can sort it out whether to take oral motor therapy or go for resolving the sensory food aversions

Since you might find this blog interesting, I just want to treat you with small technique when you serve food to your little one net time.

These are some visual tips to look forward to –

  1. Food separation on the plates
  2. Fun food and fun presentations of food (rainbow snacks, flower snacks)
  3. Motivating snack mats or plates( a good or cartoon based food mat )

This can help kids to overcome food aversion associated with sight

For kids who have aversion towards food because of strong odour, best idea is to desensitise them by slowly introducing light and feeble smells and then proceed to heavy.

See you with another blog very soon!

“Please leave valuable comments if you need more information about this topic of feeding challenges”

Creative efforts and Pizza lover – Heena Sahi