Nivedita's Blogs

Time to pause, reflect and review again….collect all thoughts, take decisions!

My husband had to move to another city, as a job requirement. I had to take the critical decision of either moving with him or staying in my city with the children? On one hand, my children would need their father to be around, and on the other hand I could not unsettle my daughter and ruin her future prospects. I thought of exploring the options in the new city, but they were not satisfactory at all…

Lord was kind enough to provide me with the company of a tough and wise nanny. She made it possible for me to cater to the varied needs of both my children. And I decided to stay back here with my children! I was blessed with wonderful friends, whom I could reach out to even at 4 a.m., be it about my son’s fever or my daughter’s health issues. I consulted with a homeopathic doctor who assured me to help my daughter with some of her ailments. Allopathic medications were brought to a minimum, as her panic attacks reduced in intensity and frequency! I began counting these peaceful days with gratitude….being thankful for each day that went well!
Kal kya hoga….kisko pata…abhi zindagi ka le lo mazaa!!!????

I always felt, that the more exposure a child gets, more challenges she faces and more learning takes place! In school she had already learnt to sit in a group and watch programmes in the assembly quietly. I started taking her to the movie hall. This had a few additional challenges….a lot of people in a new environment, the darkness, the loud audio and the movie would sometimes be difficult to follow or boring. Hence, we had to do a lot of planning before going for a movie and be ready with strategies during the movie!

Short holidays, picnics, visiting relatives in different cities were huge learning opportunities for my daughter as well as refreshing for my son and myself. These also helped the four of us to understand each other’s needs better, in different situations! Waiting patiently at the luggage check in, keeping calm in the security check queue, staying occupied during the flight were major skills which improved with practice. Learning to use washrooms in different houses and hotels was very challenging due to her sensory issues and unknown fears!
Each day brings with it many opportunities for each one of us to learn more….

I was chosen and accepted to join my daughter’s school as an educator, the same year my son entered the school! This was a fantastic privilege and a blessing indeed! It was also a huge responsibility to be enrolled in a big organisation and be able to deliver as per its expectations! Most importantly ‘self doubt’…will I be able to do justice to my role? Will I be able to balance my duties towards my own children and my students in school?
I took the decision to move forward and challenge myself further.

You can only grow if you are willing to feel awkward and uncomfortable when you try something new- Brian Tracy

Short term goals, followed by big dreams….having faith

I spent every day with the morning prayer, “Lord, please help my daughter to stay calm without a panic attack today.” If it was a good day, I would feel so relieved; if not… I would go to sleep hoping for a happy tomorrow! One night, when I sat looking at the stars and talking to my special educator friend, she said that although she was not a mother yet, she could feel my pain! She also said that one day she wished to be a mother like me! This lifted my spirits instantly….

In the beginning of 2008, I started volunteering to work with children having varying needs in the junior section of my daughter’s school. This gave me good exposure and understanding in addition to immense amount of satisfaction. Getting into a routine of work outside home, with both children in their schools was keeping me fruitfully occupied.

My daughter was now in the hands of an extremely patient, experienced and compassionate educator who remained a mother figure for her for the next 3 years. She had a few long meetings with me, discussing the strategies to calm my daughter, when agitated and the possible triggers. Every educator teaching her a different subject connected with me and we started working together. Medicines to control her anxiety were weaned off gradually and she started becoming calmer. God’s love is so wonderful!

I remember the day when my daughter’s history teacher called me to share that she had answered 2 questions correctly in her class. She was showing interest in learning geographical facts as well! Her lessons were being adapted in terms of volume and with less complex facts. Since reading, spelling and memory were her strengths, she started learning fast and recalling better! Grammar concepts which followed a pattern were easy for her to pick up. Computer classes were honing her strengths as well! She started typing well, learnt formatting and PowerPoint! For Mathematics we had already switched over to functional curriculum.

My daughter started appearing for cycle tests held on every Wednesday and started scoring good marks! After 4 years of rollercoaster journey in middle school, she was learning well and performing quite well too! I looked forward to PTMs to discuss and understand the various perspectives and collectively plan to help her progress even more.

We had a tentative plan of training her in some vocation after she would complete middle school! But seeing her progress in academics, the team of special educators felt that she could be promoted to senior school and trained to appear for NIOS examination. This was an amazing news and a big surprise for us…. to dream BIG.

‘Not all storms come to disrupt your life, some come to clear your path.’

What NEEDS to be done HAS to be done…

In middle school, my daughter got a very warm welcome and all the educators reached out to understand her varied levels of learning. By 2007, when she became comfortable in her new environment with a new set of experienced educators, her health issues started hampering her learning. Every educator made the effort to understand her discomfort in a particular situation and tried her best to settle the problem.

Treatment for PCOD started for my 13-year-old girl with Autism. She started complaining of headaches and she began showing signs of anxiety and aggression. This was tough especially because neither she nor us could figure out the cause of her discomfort and pain… was it a side effect of medication or was it because of mood swings due to adolescent issues? We consulted the neurologist who suggested an MRI to rule out any complication in the brain.

Getting her pricked for a blood test was very challenging and the MRI seemed very scary. We had to sedate her with a lot of difficulty. Before sedation, I explained to her that this was being done to cure her ‘head pain’….but her expression told me that she still wanted to understand WHY. The whole process drained me out and after returning home, my son asked if his sister was okay now! He was probably curious to know if we had found a complete cure for her!

The MRI report was clear and the neurologist advised me to consult a psychiatrist, who prescribed some mild medication to make her calmer and more relaxed. Her endocrinologist suggested that we discontinue her treatment, instead switch to lifestyle modification. This primarily included intensive exercise, a modified diet and short walks after every meal.
I had no choice but to trust our doctors, their diagnosis, advice and to be patient. I was sure that running away or looking for a second opinion at this stage would be more confusing and stressful. So I would make a list of all my doubts and queries before every appointment with any doctor and request her/him to explain to me the role of the medicine. Reading about side effects of medicines on the internet can be traumatizing….we are not doctors, we do not know what to pick and what not!

My little son was doing reasonably well in his school and I was determined to celebrate his milestones to the fullest. To be able to do that, I practised to detach myself from my daughter while spending time with my son! So, if my daughter had a bad day in school, after wiping off my tears I learnt to wear lipstick and take my son to a birthday party.

I started experiencing “Kabhi khushi kabhi gham” on a daily basis!

Finding joy in everything!

Daughter now eleven, watched this newborn closely and took interest in observing the activities around him. We tried to involve her in whatever way possible and realised that she was understanding and developing feelings like concern and care. She learnt to keep the door shut when the baby slept and held him very carefully on her lap not letting him slip. She liked  playing with his little toes and fingers and was highly focused while watching his diaper being changed!

Another educator, efficient and energetic brought my daughter many steps forward in terms of answering multi-choice questions, writing, drawing and doing small tasks independently. I was unable to attend her last Annual Day function in junior school, due to engagement with my son. My emotions knew no bounds seeing her standing so patiently on stage and singing with actions like all the others, as I watched her video later. She made her teachers and her school so proud! Now she got promoted to middle school in April 2006.

My daughter had been gaining weight steadily in the last 2 years. We thought it was for comfort eating, leniency on our side and lack of adequate exercise. Still we got a few tests done to rule out any physiological issue. It turned out that she is suffering from insulin resistance (i.e. pancreas was producing excessive insulin), which results in PCOD, hair loss and obesity. This needed to be treated and we started visit to the endocrinologist. This time also happened to be the critical phase of adolescence.

My son’s milestones were well in place…we thanked God a 100 times when we heard our son speak, talk and sing effortlessly! Still there was fear at the back of the mind, hope his learning and social skills will be at par with the rest. This would be ruled out once he goes to school and interacts with other children. It was time for us to admit him to a play school and I was full with gratitude for getting another chance to bring up a child…trying to give my best! He settled down in pre-nursery and began to open up to his peers.
On their Annual Day, it was the same feeling of excitement to see my son on stage…yet very different! I did not want my son to stand out….I wanted him to be like others…
At the end of the show, tears rolled down my cheeks, a parent sitting next to me asked, “Is it your 1st child on stage…this had happened to me too!” I don’t remember my answer!

A loving child otherwise, my little son was hesitant at times to approach his sister, probably confused or scared of her ways which were different than others! It was too early for me to explain to him….all he needed to know was that HIS SISTER IS LOVED IMMENSELY!

Praying in any form is powerful…

Every mother asks for her child’s safety, good health and happiness in her prayers. Whenever I spoke to God, I asked him to cure my daughter inspite of knowing that Autism cannot be cured. Now I had one more request, “Lord kindly gift me a healthy child”. My mother made her own demands from Lord and my gynaecologist prayed for me too. My friends wanted to help me in whatever ways they could, teachers in school promised to take responsibility of my daughter in the best way they could. I felt totally blessed.

I was advised complete bed rest with a strict diet due to the possibility of some complications. My daughter displayed anxiety in a couple of situations which could be due to less active involvement from my side. My family contributed to the best of its capacity to fill the gap. I tried looking at this as an opportunity for her to learn to function without me for times to come.

It was Sports Day and I was super excited to see my daughter’s progress over these years. My doctor granted me permission to attend it, with a long list of precautions. It was a fantastic performance by her; she ran on time, on her track and did the activity planned, with just verbal prompts. I did cheer and scream, wanted to run and hug her….I thanked Lord! I wondered if parents of children who could do all of these without help and extra effort, knew how lucky and blessed they are!!!

And then came an emergency, my neighbour friend accompanied me to the nursing home, my doctors rushed to see me, did the needful and shifted me to the ICU of a big hospital. I remember holding my doctor’s hands and begging, “I want the baby…I want to be alive for my daughter too…” She said shakily “It will be a miracle if the baby survives!”
I left everything in the hands of the Almighty!
My cousin came with me in the ambulance. She kept praying and assuring me until we reached the ICU. Husband was out of town, nervous and desperate to get a flight back home! Later in the evening I received a call from the teachers of school in which they said that they will take complete care of my daughter and that I did not need to worry at all. This assurance was magical and gradually we could overcome the crisis!

The next one month was crucial and full of restrictions. My daughter got used to my limitations and learnt to accept them. She probably wanted to know more about why I was ill, how long would I be ill and whether I would become active again like before.

Finally our little boy made his grand entry! My gynaecologist said, “I was ready to handle 100 problems, and you gave me none!” The team of doctors were much relieved and everyone rejoiced! The reception of our nursing home could not accommodate the large number of visitors, who had come for our support.

Gratitude for the present moment and the fullness of life now is the true prosperity.” – Eckhart Tolle

Big Question….What happens after us?

We were either running away from this question or had no time to think about it!
How will she live…where… with whom…when we are not around?
Suggestions started pouring in! At present, our daughter was quite settled in school and we had faith that she will be coping and learning better with time.

The most sensible thought seemed to be ‘what if she had a sibling?’ Parents senior to us who had two children felt that another child brought normalcy to the family. This normalcy brought in energy to fight better as the struggle of bringing up a special child was here to stay in different forms…..
We parents need happiness, fun and a life just not around the special child but otherwise. Looking at the world with perspective of having another child brings in more positivity and joy, this equips us further….

For the next 2-3 years, life was steady with my daughter getting regular inputs in school and at home. She was progressing well in academics and cocurricular activities but slower in terms of language development. We started teaching her how to express various emotions in different ways. In annual functions she began to perform well with her loving buddies who gave her physical and verbal prompts on stage. From school she participated in spelling contests which were organized for specially abled children from different organizations. She bagged the first prize for three consecutive years! Thus, the school did its best to channelise her talents.

We planned a holiday to Chennai and met a very senior Autism specialist to reassure ourselves if we are on right track and if we could do something more/different for our daughter! She asked us to expose her to a variety of situations to learn the social skills better and we were already doing it! Ma’am suggested that we break a task and an instruction into simpler steps for better processing and implementation. To my surprise, I was already doing that as a result of the learning through my experience of teaching her different skills!

One fine afternoon we were pleasantly surprised to learn that God has finally decided to bless Medha with a sister or a brother! It was initially quite overwhelming and it took us a while to actually believe it. Keeping my daughter’s activities, therapies and well being in mind, we had to now focus on this new project. We had read that there was a possibility of having another sibling born in Autism spectrum….this was very scary. It started causing stress in me, which was not good for my mental health. I read an article in Reader’s Digest “To keep yourself sorted, note down what is in your hands and what is not!”

Que sera sera…whatever will be will be…

Time to pause, take a long breath and look around….

My daughter started settling down in her school, and her working hours stabilized. This gave me almost four hours to myself. Slowly I started learning to divert my mind away from the constant worry of hoping that she is fine, not troubled and not troubling others. I would go to the gym and clean the house during this free time. But I felt that I was not utilising this precious time usefully enough. Hence, I approached a nursery school in the neighborhood to do some voluntary work. I chose to work with children, whom the teachers found difficult to understand or work with in the classroom.

I joined the Parent Support Group of my daughter’s school and got the opportunity to interact with senior and experienced parents along with heads of the school. Some of the main agendas of this group were:
1. Addressing the issues faced by parents of the children in the the learning centre.
2. Discovering avenues to train these children and hone their different skills when they graduate, organising workshops for all parents for awareness.
3. Creating a bank of good and sensitive specialists.
Being an active member of this group was very encouraging because:
1. I am not alone. We developed a bond.
2. I could access knowledge of a broader spectrum. Children came with different challenges.
3. Sharing our experiences threw light on the mistakes and wrong approach towards things.
4. We learnt more using research which was already done on a particular area.

When my child was in school she was getting exposed to different kinds of stimulations but her ability to express her feelings and discomforts was getting better. Hence, bouts of crying happened which were being handled and taken care of by the educators. Messages were conveyed to me on regular basis regarding situations which would be unsettling her in my absence. Teachers and we parents were partners in true sense, wherein we discussed strategies which worked and which did not.

My daughter’s 1st annual day! She and her friends were dressed up as clowns in bright yellow and they had to stand in line and do some steps on stage. We stood proudly with our cameras ready with all the other parents and we were thrilled to see our doll looking so cute like all the others. No one would have known that she was DIFFERENT if she did not start marching around looking at the crowd and probably trying to find us! My heart sank…maybe she forgot what to do… maybe she did not realise that she HAD to perform! Her class teacher read my face and said with a smile, “she was so settled ….she looked so sweet…” I went home remembering only the encouraging and loving words from her teacher!

On Sports Day our small children had fun races. By now a little more aware, my daughter ran nicely with her buddies holding a toy boat. It was such an achievement for the teachers! I felt so proud of them, their efforts and their belief. It was now the grandparents’ turn to participate. My mother, so proud of her only granddaughter’s performance, walked very fast …. she had totally forgotten about her pace maker and health issues!

That day all I remembered was the song we sang so often in school, “Count your blessings…name them one by one…”

Continue reading “Chapter 9”

Excitement…apprehension….Gratitude ….for the new journey!

All set to enter the big and beautiful school! Uniform ready with a new school bag, bottle and tiffin box…all nicely labelled. A few days prior to the first day in school, I met up with the educators of school to give them an idea of the present level of functioning at home. They were already made aware of the latest reports and recommendations from clinics. I visited the temple the previous evening to thank God for the admission and prayed for good luck. A part of me felt sad for all those who were not lucky enough to get the right place for their child…. and we were one of them just a month back!

We received a very warm welcome at the reception of the school by two educators and the principal. After a short interaction, my daughter went to her class with the teachers and I was requested to wait for some time. The plan was to increase her time of stay in school (without me) gradually from one hour to four hours. After a few days of observation and interaction, the educators and I met to review her progress and plan ahead. I soon realised that the team was open to listen and they were compassionate and very patient.

God was kind to place my daughter in the hands of a class teacher who was sincere and very sensitive. She was keen to know and understand my daughter with plenty of patience and love. After a month, she had a plan in place for work in school and at home. She did not realise what that meant to me. Finally, someone was understanding my child, believing in her capabilities and taking responsibility. This  was a big relief after so many days and months and years.

Since my daughter’s reading ability was superior and she was gifted in terms of her spelling skills, her teachers had a “wow” feeling towards her. This gift of hers helped her to read sentences big and small, simple and complex. But her comprehension was at a much lower level. Hence, her strength of reading was being used to teach her language and comprehension both at school and at home. In school, academics was taken care of individually and also in small group set-ups.

For co-curricular activities, my daughter went to the mainstream class with support. Music and drama would be overwhelming for her causing her to run around or make noise, thus disrupting the rest of the class. Nevertheless, the staff in school were also trying and doing their best, keeping in mind the best interest of all children.

This was the reality no matter how painful it may feel…
When you know that your child’s behavior can cause disturbance to others, you can blame nobody….not the teachers, not the children in class, not us parents and definitely not the child.

Diagnosis and label….importance of both!

We needed to get some assessments done for the new start in the new school. When my daughter was around three years old, we had got her MIR and CT scan done to see if physiologically she was ok. Psychological assessments done then at various institutes and clinics could not give us any concrete diagnosis. Either it was too early then to label or her case was a little unusual in those days. In 2000 January, she was seven years old now. It was comparatively easier to get an idea of her ‘can’ and ‘cannot’, provided they matched her interest and intelligence.

Going to Autism center, Vimhans, AIIMS, NIPCCD, and online researches gave us a fair idea that my daughter is in the spectrum of Autism. Her ability to read and spell at such a young age says that she is high functioning and has a lot of potential which needs to be chanelised. Now that we were lucky to have found the right learning environment for our child, we were hopeful and mentally stronger. School suggested that we work on certain areas  to enhance her skills which will improve her chances to adjust and learn better in the big school set up.

The need of attaching a LABEL to the child became a major concern in those days. It had its positive and negative connotations. When you define a child with the label, it attaches certain features to the child, even if they are not necessarily present. With the features come the do-s and don’t-s, which again may not necessarily work with the child. On the other hand, when you see symptoms of a disability present in a child, you can get an idea of how to begin work, and broadly what to expect from the child. This was my understanding after interacting with special educators and attending few workshops.

On one occasion before an assessment the psychologist said, autistic children donot get affected by presence or absence of people, they love to be on their own. As soon as I started with  my “But….” she gave me a firm look to leave the room quietly. I could hear loud cries and tantrums from outside and ran to peep from the glass door. My daughter was very unsettled, no toy or puzzle seemed to be of help. I was asked to come in and she immediately held my hand and pulled me to exit.  Later she did cooperate for the assessment but preconceived judgement had already damaged the situation.

By now my daughter could read and type sentences, she could spell very difficult and long words, without being taught. During assessments we came across monotonous drills like identifying a,  b,  c, d…which would naturally demotivate her. So anticipating this, I would promise her a reward in advance so that she cooperates during assessment.

I would often wonder, this child is born different with different abilities, she has to justify this…time and again to please us and others!!!

Good luck ….followed by a big surprise…and bigger celebration….

In my college I had studied Child Development and I was in touch with my professor. She offered me to come and take a look at the new nursery school that was coming up and it would be attached with the college.This was a wonderful opportunity as I was also asked to assist the child. Sensitized environment, with teachers being guided and monitored by our professors created more awareness and comfort for both of us. We all learnt together and my daughter started getting used to a school routine once again.

I developed an insight on how other children behaved in various situations and how different my daughter was. I noticed minutely how others learnt simple things effortlessly while my child could not even figure them out. Answering a direct question asked, needed verbal prompts and assurance. Teachers were trying to communicate with her and I tried to bridge the communication gap between them. Some children tried to reach out to her initially. However, by getting no positive response from her, they started to avoid her. This was but natural, no one was at fault…neither they nor my child.
Reality was very clear and visible which would hit me at times to ask WHY?

We received a call from a big, renowned school in Delhi which had a learning centre. Soon, after my daughter had stepped out of the big school more than a year back, we had applied here. I can still visualize this pretty little girl of mine wearing her best dress and walking away holding the hand of a friendly educator. The pleasant and assuring smile on the educator’s face when they returned holding hands, gave me hope. Our interaction with the heads of school went off very well. We shared our experiences, feelings and gratitude for being given the chance.

Very soon we were called from school and handed over the letter of ACCEPTANCE. The feeling was beyond expression! It felt like a dream too good to be true! We proud parents wanted to celebrate with our dear and close friends, the same evening. We all danced till midnight… everyone rejoiced with new hope!

Again we realized, a small achievement was actually a big one and we must celebrate anything big or small!