Nivedita's Blogs

What now?….and then? Will she? What if…

We had 2 papers left for completing Senior Secondary Examination and they would be held in April 2015. Preparation was progressing well….’Data entry’ and ‘Catering Management’ were both interesting for my daughter. In December 2014, I noticed she started weeping for no evident reason. It could be for a duration of ten minutes to one hour and from once to several times a day!

To help her express her feelings, I always asked simple direct questions through writing, as she is a visual learner. I tried making a note of what happened just before her crying….looking for triggers and association to any person. Was it an incident or an activity; physical discomfort or hunger….it pained to see her cry for no reason, at home and outside.
In January 2015, school was going to celebrate the Graduation ceremony of her batch. She would have to go on the stage, be on limelight while receiving the award….she would need to be happily settled till completion of the event! This kind of celebration would be for the 1st and last time, in her life. It HAD to be memorable and HAPPY.

I requested her teachers to let me be around her, during the invocaion ceremony and musical programmes, and till the awards began. I prayed hard, massaged her hands, bribed her to smile through the ceremony. We both revised every step that she had to follow while going and being on stage! Then finally she rose, walked up proudly and smartly, received her awards, gave her million dollar smile to the photographer, walked down the steps carefully and smartly! Yes !!!!!she did not cry but definitely I did…it was joy…it was fun…

She graduated from school after 14 long years of learning and achieving, struggling and shining! I felt my heart swelling up with pride and gratitude towards each and every educator who contributed towards her, in this journey. I must have questioned, nagged, complained and challenged them several times during all these years! But we also worked together, supported each other….understood our limitations and frustration. And each time we raised the bar to help my daughter achieve more than we thought she could!

Now the last and final inning of school…. she had to sit for her examination, write and complete her paper while staying stable, EMOTIONALLY. I had immense faith in her reader but did not want her to be burdened with any extra hassle! I could not thank her enough for being so kind and sensitive with a positive approach towards my daughter always! She was so humble yet confident…she understood my daughter, wanted to help her and she knew that she COULD help her!

“Because that’s what kindness is. It’s not doing something for someone else because they can’t, but because you can.” – Andrew Iskander

Juggling is an art…we all master it!

My daughter’s examinations, her daily school schedule, other commitments made it very difficult to devote adequate time to son, when he was 9-10 years old. I did what was necessary for his health, education and entertainment, found what is called ‘quality time’. But I realized that he craved for more time with me. The time that I gave him was mostly when convenient to me and not necessarily when HE WANTED IT.

Apart from monitoring his studies, homework, co-curricular activities, I had begun teaching him skills to be independent. By 4th grade he started showing good progress in all spheres and was responsibly involved in school activities. I felt blessed and thankful to his teachers in school.

“Mamma why can’t you spend more time with me?” “You are always teaching her….”
This was true and his feelings were justified as well!
I tried to explain: if one of my two legs is broken I need to take care of the broken leg more to be able to walk well….also the broken leg pains and seeks attention!
But does that mean that I am not grateful to God for the leg which is so efficient and strong? Am I not taking good care of the leg which is working hard and taking some load off the broken leg? What will happen if I dont pay constant attention to the broken leg? Will I be able to walk? Can I ever separate the broken leg from my body? Is it not coping, learning and trying to be as capable as my other good leg?

To my surprise he understood well and agreed with me, too! But it took time and different situations encouraged him to understand his sister’s needs and difficulties! It took time for him to acknowledge the fact that no matter how much we try “she will never be normal” like rest of us! But we need to keep trying for small achievements which in turn give big satisfaction.

A friend pointed out, “Are you not snatching away your son’s childhood? Are you not expecting a lot more from a little boy?”
Probably “yes”
My son grew up faster…he learnt to cope better, he observed imperfection and disappointment on regular basis….he chose to smile and laugh to cheer up his family! By God’s grace, he will grow up to be a sensible and sensitive person, hopefully!

His father took him to movies of his choice, sat and watched his television serials and accompanied him to Karate and chess tournaments. The boys shared silly jokes and found new interests together….
I assured my son that after his sister’s last examination, I would be able to spend much more time with him! And that was a PROMISE!

“Balance is not better time management, but better boundary management. Balance means making choices and enjoying those choices.”

– Betsy Jacobson, Business Consultant

Having faith…..YOU are not alone….

In May 2014, we started preparing for the 3rd paper of Senior Secondary Examination, Home Science to be held in October. My daugher  enjoyed learning this subject and was able to relate to almost all the topics in the syllabus quite well. There were around 25 chapters and we learnt in detail, revised orally and solved test papers with attention to various skills. In school, she fared well in the tests and terminal examination. Around two weeks before the examination, she knew where in her register, we could find the answer to a question…this was quite impressive!

My daughter was going to be accompanied by her reader, smart and sweet, calm and brave who was with her for the 4th time now. We went to her home, for a couple of mock tests, so that we could find solution to any hindrance possible during the examination. We wanted her to do very well! This time our examination centre was in Noida’s NIOS centre itself. My friend’s mother in Noida was so kind to make arrangements for my daughter to come to her home and relax before the examination. We are blessed.

Our reader assured me that all will be good, as they stood in the long queue to enter the examination hall and I had many worries. My husband and myself waited for 2 hours under the tree patiently for them to return. The paper was tough with indirect questions; the reader tried her best to simplify them and my daughter did her best to answer well! We returned home satisfied with all our efforts….I thanked the reader for being so brave and positive!

Results were declared…she did not clear the paper!
The reader insisted that the paper did not go bad enough to fail. It was just not upto the expectation, considering my daughter’s preparation and ability to recall. My friend suggested that we apply to NIOS, for a request to see the answer sheet. That would be a long difficult procedure but on the other hand repeating the tedious journey of preparation and re-examination seemed very tiring too! I was confused and disappointed but my friend was confident…she had faith in my daughter’s ability and also in the reader’s feedback.
She reached out and held my hand!

After 3/4 visits to Noida office, we finally managed to take a look at the answer sheet! My friend was right…I was amazed…
My daughter’s answers matched with the questions of Set A, whereas she was marked wrong for 50% of the questions. So it was obvious, that the examiner would have matched her answers with question paper ‘Set B’ or ‘Set C’! We had to make many more visits all the way to NIOS office to escalate the matter to senior officials, along with a series of formalities…until they were convinced to make the correction.
It was a huge achievement for my friend who so selflessly fought this battle with me…for me….for my daughter!

“Perseverance is not a long race; it is many short races one after the other.” Walter Elliot

Observation…..Self-correction…..Review

A few relatives mentioned that I don’t pick up the phone even after my working hours. A friend said “Tu kya ghar mein bhi time table follow karti hai?”
When you have to fight the battle everyday, it only makes sense to embrace the battlefield and fight with a smile. We are associated with Autism for the last 25 years, we now have a fair idea of what works well and what works best for the family, on a daily basis. Following a ROUTINE, with short breaks, helps us to keep busy fruitfully. When I am committed to my family, to my job and to myself, I need to do a lot of stuff keeping everyone’s interest in mind. My daughter’s needs are top on the list and cannot be compromised on. Hence I plan each day of mine in a way that I can cater to needs of all kinds. A few things have to happen everyday to keep my daughter happily engaged, fit and healthy. But again, planning and following a routine always…prevented me from being flexible or from taking an impromptu decision….this is also important and something I am working on!

Through the years, I have come across situations where, to meet a deadline I needed to work too hard. For instance, just before leaving for school, if my daughter feels uncomfortable or wants me around, being unable to express, I try to settle her and at the same time try to reach school on time. This has happened for years on a regular basis, hence I did not feel the need to share, explain or justify to others.These kinds of experiences taught me to be empathetic and give benefit of doubt to others….God knows what kind of battle the other person is fighting! I feel blessed to have realized that!
On a lighter note, when my friend asked me, “How could she speak to you like this…?” The first thought that comes to me is, “…she must be not in the right state of mind….”

There is a great pleasure in giving and doing! If a parent has worked hard for months together to teach a skill or concept to the child, she learns to overcome disappointment on daily basis. He/she learns to work harder with new hope and enthusiasm even without getting an immediate result. This teaches the person ‘resilience’ and not to depend on rewards from others, in the bigger picture. This is what I feel is an important learning….to stay happy and contented.
In initial years of struggle I would expect others to do this or do that and thus add to my stress! Gradually I figured out that it is sensible to expect only from ME, what others do is then a BONUS! And I have collected a lot of bonus….from so many people in so many situations!

As I focused on one day at a time, in terms of efforts and gratitude, small achievements mattered a lot. On the other hand, small disappointments also mattered a lot! This was an important observation…I made over many years!
Was it because I wanted concession in other challenges of life or was it the case of that last straw which I am unable to carry?
My daughter’s challenges are here to stay….road will be tough and rough, we are now equipped to walk on it, we know how to get up after a fall and walk again. Other obstacles will continue to come as well and I will have to look at each one objectively…without analyzing and questioning!.

Take time to deliberate, but when the time for action has arrived, stop thinking and go in.”
– Napoleon Bonaparte

Face it, take it easy, there is always a way out!

“Mamma, is my sister special needs? What is the cure?”
I had this fear at the back of my mind, what will be my answer when my son asks this question one day? I remember how I felt while answering him, but I do not remember what I said to assure him. I somehow felt confident that with time he will gather knowledge and wisdom….he will grow up to be a sensible brother. He began noticing his sister closely, trying to understand the areas which made her different or less than rest of us. He had quite a few questions which I knew would be taken care of, with time.
A happy child generally, at eight years of age he seemed to understand and think with maturity. I started expecting him to not be disappointed while I gave more time to my daughter. I knew that this was incorrect so tried my level best to strike a balance between both, setting priorities.

We started preparing for 2 subjects, English and Mass Communication to be held in April 2014 as the first part of Higher Secondary Examination. We were now confident of English grammar and comprehension after intense practice. The examination centre allotted this year was in a government school in Pataudi village, which took us around 2 hours to reach. Hence, I ran to the Noida office with a request to reconsider and change the examination centre to a nearer location. On the day of the examination, we got stuck at the railway crossing due to some unforeseen obstacle. We all walked for almost a kilometer in the immense heat to reach the examination centre. We HAD to kept CALM.
The benches were narrow and cracked, the fans moved at a low speed, it was suffocating…how would she manage with all her sensory issues? I tried my best and succeeded in staying relaxed until her paper was complete.
This time, my daughter was accompanied by an intelligent and sensitive girl as the reader, who assured me that everything would be fine!
She cleared both the papers and scored decent marks.

In May 2013 we had taken the challenge of travelling with a group of 30 people to see Europe. I was warned about the various challenges we were likely to face long, connecting flights at night, several breaks in the journey to different cities, early dinners, crowded places and so on. We made a note of all this and planned elaborately with minute details, preparing my daughter for possible changes as well. We ‘Senguptas’ turned out be one of the families always on time. Others in the group sensed that my daughter was different an they became sensitive and cooperative.

In May 2014, four of us went on holiday to Srinagar. I noticed that my daughter’s ability to explore, adjust and to connect with the environment had remarkably improved. We chose to visit tourist spots which would not be too challenging and those which could not be missed as well. At the entrance of Mughal Gardens, we mother and daughter waited as the father and son had went to buy tickets. A young girl shouted at a group of children and pointed at my daughter….they all laughed and laughed! I too looked at my daughter…. she was smiling with no clue, why everyone was laughing at her! I walked up to the young girl and told her “Beta kisi ke upar hanste nahi…” As I remember this incident, I get a lump in my throat.

My daughter has been laughed at, innumerable times in different situations….but this incident still hurts. I realised then, maybe she is blessed with Autism and hence, she was saved from the pain I felt by people’s ignorance!

Zindagi, kaisi yeh paheli hai re….kabhi yeh hasaye…kabhi yeh rulaye!!!

Exposure…….learning……satisfaction……gratitude

When the results were declared in May 2012, we were pleasantly surprised to see that that my daughter had cleared all three subjects with fairly good marks! Her educators cheered and rejoiced seeing her on stage, receiving progress awards for this joint achievement. I explained to my daughter what all she had done very well and why everyone was congratulating her. She was able to relate to the happiness and smiles in all our faces, as a result of her good work! We started preparing for the 2nd round of examination for 2 subjects Business Studies and Bakery, to be held in April 2013.

My son’s talents began unfolding and he showed interest in vocal music, dance and drama. He participated and performed beautifully on stage in school programmes as well as during Durgapuja celebrations. Seeing him so confident on stage whether singing or delivering his dialogues, it would be difficult to control my emotions sitting as a spectator. His sister learnt to sit in a huge crowd, wait for his performance and could easily connect with him when on stage. These were the real moments of pride for us parents and I thanked the Almighty wholeheartedly.

For the first time, we sent our daughter on an out-station trip with our caretaker. She had difficulty in using washrooms outside home due to her sensory issues. A lot of assurance and a bit of extra cleaning helped her to adjust to the new washrooms and bathrooms. Lord has been so kind to bless her with peers who engaged her and accompanied her in the different activities during the school outings. I often wondered if my daughter benefitted from these interactions, what did the others learn from my daughter? The answer is ‘kindness’, ‘acceptance’ and ‘sensitivity’.

Business Studies was a tough subject for her to comprehend but she managed to learn the matter so well! This girl could memorize and recall upto 20 points in detail, to answer a given question! We restructured the questions in various forms and she learnt to associate the answer to the question. She still needed prompts to differentiate between an objective and a subjective type of question. Bakery was an easy subject with interesting topics along with practical work.
This year we were more confident with our preparation. An young sensitive educator who had been associated with special children, agreed to be my daughter’s interpreter. After the examination, the educator could not control her excitement in expressing how well my daughter answered….it seemed that she knew all the questions! It was a task for her to slow down the pace of writing the answers!
That year, she topped in her class for her performance in Business Studies. It gave overwhelming happiness to hear her name for the highest score, when she received the award on stage.

I said a silent prayer of gratitude to God for giving me the wisdom to make the right choice….to encourage her to study. Now, she had proudly cleared her Secondary School Examination!

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” – Helen Keller

Some valuable learnings during the journey….

Initially while fighting the daily battles, I did not feel like discussing about my daughter or her challenges with everyone. I knew if I complained and cribbed, people will not enjoy my company. I even felt very often, when you share a concern people jump to suggestions or advice which may not be encouraging or appropriate for you. They do that only with good intentions as they want to help you! Again at times, when you want to talk about a problem, the listener immediately compares it with her own problem, probably to make you feel ‘you are not alone’! As a result you may stay quiet and not share further! Thus I learnt to share my concerns with people who were ‘Good Listeners’….with no hard feelings for those who were not!

Whenever I sat down to teach my daughter, be it skills or academics, I noticed that I needed to give 100% focus and concentration. When we are sincerely involved with the child the outcome is very satisfactory. I made it a point not to take any calls while was busy with her which could be chanting or doing art work or reading a story to her. Later when I got the role of an educator in school, it came naturally to me to work with a child just the way I would want an educator to work with my daughter!

While working with a special child we need to focus on one step at a time and not look at the whole picture. Progress is slow in certain areas and at times the child tends to have regression as well. Thus the teaching process can be hectic and  draining. We may need to do some drills on daily basis for the child to make that minimum progress. Also we may need to use alternative strategies to teach just a single concept. In the process, the caretaker develops loads of patience with resilience which is a necessity while working with a special child.

As my daughter learnt to express her needs and discomforts, she also understood the meaning of ‘expectation’. For good behaviour in school or a good exercising session at home, she always got a small reward. This taught her the meaning of ‘expectation’, which has always been decided by discussion and negotiation. We always have been trying to keep our promises. If ever we couldn’t keep a promise, we have always explained to her the reason behind it. We never  forget about the promise made to her, because we know that small rewards bring her a lot of happiness. She may not be able to express her disappointment in words, but her eyes speak volumes!

‘Trusting others’ who take care of the child in absence of parents, is a huge challenge every protective mother of a special child has to face.
Whether she is spoken to rudely or ignored repeatedly and not given assistance when needed….are the worries which may occur in the mother’s mind. Children like my daughter are often not able to come back to parents and share these incidents. I too went through these doubts initially and later occasionally. Close and distant monitoring as per need, connecting with the child, discussing the day gone and overall faith in Almighty….are the solutions I found!

Sometimes the best thing you can do is not think, not wonder, not imagine, not obsess. Just breath, and have faith that everything will work out for the best.” Anonymous

New project…new campus….new challenges…apprehension….satisfaction

Taking a board exam for the year 2011-12, for my daughter with the condition she has, seemed to be difficult. The questions on my mind were:
1. Will she be able to comprehend, learn and recall everything she is taught?
2. Can she cover the entire syllabus? And then solve test papers too?
3. Is it possible for her to sit through the long examination hours?
4. In a new examination centre, will she be able to adjust well?
5. Will she be able to manage her moods in the examination hall? What if she doesn’t know an answer?
6. Her handwriting is immature and when she writes fast, it may not be legible!

She had to shift to a new campus for the next four years of NIOS. This meant that she would have a new environment, new educators and a new curriculum. I connected with the teachers almost on daily basis for me to understand the lessons taught and for them to understand my daughter. We chose 5 subjects: English, Home Science, Data Entry, Business Studies and Bakery. The board offered the flexibility of taking examination of 1 to 3 subjects at a time and clear all, over a span of 5 years. But we wanted to clear all 5 subjects within 2 years. NIOS had provisions for appointing a scribe/amanuensis (reader) to assist a special child, while writing an examination. To avail this facility we needed to get a medical certificate from a government hospital stating her condition and need for provision. Then along with other necessary documents, we needed to go to NIOS head office and collect the permission letter for the same.

On one side as we made preparations for the examination to be held in April 2012, we also needed to work hard on her skills. In the August mid-term examination, the educators observed the areas in which she would need support. Then, after getting a detailed feedback I created a set of guidelines for her writer during the examination. We discovered that:
1. When my daughter started dictating the answer, she went so fast that the writer could not keep up to the pace. When asked to repeat, she lost the flow of her thoughts.This could cause frustration in her and hence, we needed to brainstorm.
2. If a question was asked in an indirect manner, she got confused. She needed to understand different versions of the same question.
3. If she would get stuck at times. For example, if she did not know the answer for the third question, she would not proceed to the fourth one before completing question 3.
4. She did not understand that for a 2 marker we need to write a short answer and for a 5 marker we need to write all 5 points.

We started preparing ourselves at home and at school. We changed the role of the support person, from ‘writer’ to ‘reader’. She would need to encourage my daughter to read the question, understand it, see the marks alloted and write accordingly. A friend of my daughter showed eagerness in being her interpreter (reader) and I began training her on how to get the best out of her friend, while writing the paper. We checked out the examination centre in advance which was thankfully a place with sensitive people.

She managed to write her English paper reasonably well and came out of the examination hall with a smile. She did quite well in her Home Science paper. In Data Entry, she completed her paper quickly, as she either knew the complete answer or did not know it. We all were happy and waited eagerly for the results!

We ALL had done our best…God would decide and do the rest….AS ALWAYS!

Starting each day with a new promise, making new mistakes, learning new skills!

In 2010, we were reasonably settled and learning well in our own domains. My son in elementary school, my daughter in middle school and myself a teacher in junior school…all in the same campus! Son was doing quite well with no concerns to worry about and daughter felt secured having me around in school. Her educator had assured me that I did not need to worry or enquire about her and rather focus on my own work and this was indeed a huge relief!

It was during this time, I realised that small things started affecting me! For instance, if I could not do a task upto my satisfaction I felt very disappointed. If my son had a fever, I would feel highly disturbed, if a colleague gave me some feedback, I felt quite unsettled. I had a very kind friend who was a counselor. She asked me to come and speak to her. On a weekly basis, I started visiting her and pouring out my thoughts! So many feelings came from deep within….my real fears which I have been running away from! I learnt to acknowledge them, face them, talk about them and see what could be done…this gave me great relief and made me feel lighter.

During these sessions, I learnt two things primarily: to take care of myself and to stay with my feelings. Doing something for myself everyday could be reading/cycling/ watching a programme/ chat with a friend/ buy a book/ and so on. By ‘getting in touch with my feelings’ I could trace the cause of a certain feeling and gradually learn to work on it. In this process, I began understanding my own self, my likes/dislikes, what affected me and what was good for me. I realized MY feelings were important and I needed to respect them instead of feeling guilty of being ‘so sensitive’.
Once a friend commented, “why do you need to go for counselling?” I remember saying “for maintenance….just like a car needs servicing”

I was more confident and contented at workplace and found the environment comfortable and encouraging. I had already made few good friends in these two years and started looking forward to coming to school! I realised that my relaxed temperament had a positive effect on both my children!

One day while returning from school our 6 year old son started sobbing and refused to share ‘why’! Later when we spoke, he shared that his friends had seen his sister in school and they made fun of her. I tried explaining to him that they were small children…but realised that even he was a small child! It must have been so painful  for him.
I hugged and kissed him, he ran to his sister …. hugged and kissed her!

Phulon ka taaron ka sabka kahna hai, ek hazaron mein meri bahana hai!

It is nice to know what others think….it is wise to do what you think!

Why do you want her to study? How will it help? She can learn household chores instead, which will be rather helpful! I didn’t know how to answer this.
There is nothing wrong with doing household chores, which may be correct from a certain perspective! But when you are struggling to accept that your child cannot lead a normal life, handling such comments is a big challenge. This was asked when my daughter was just 5 years old, 21 years back.

When my husband had to shift to a different city and my daughter was 11 years old, someone pointed out that I have tried and done enough for my daughter. She will not sit for an entrance exam or board exam, so why is her schooling so important? Hence, staying back in a different city for a special child’s education is a BAD idea!
Come to think of it, life would have been easier if I had the same perspective! But I chose the difficult path….or chose to create a new path!

My neighbour sent an invitation for her child’s birthday party with my 3 year old son’s name written on it. She called to invite personally and clearly told me to bring him without fail. While I was getting him ready, my daughter got excited and looked forward to get ready as well! I explained to her that it was a small children’s party and not suitable for big girls and boys. But when I reached the party, children of all sizes were there, even those as old as my daughter! My heart broke….
While leaving the party, I did mention to the host that my daughter would have been so happy to be a part of such a lovely party, her response was, “Oh! Do you take her to parties?” I smiled.

After my daughter’s panic attacks started settling down and the days began to seem peaceful, a friend of mine came up with an idea which I am sure, seemed most sensible to her. Keeping my daughter’s future in mind, she felt we could identify a residential institute and start sending her there on weekends. In this way, she could get used to that environment and we would have relaxed weekends without our daughter.
How would I leave her away from home? How could I relax at home sending her away? Could I have meals which were her favourite, without her during the weekends? How would I explain to her why I was sending her away?
I was happy to be her mother, I had no complaints!

Gradually I learnt to:
“RESPECT A THOUGHT WITHOUT AGREEING TO IT”