WHAT TO EXPECT FROM YOUR CHILD WITH DS?

Why 'Raising the bar'?

While going through Down Syndrome awareness program for doctors I prepared many posters and one was 'Raise the bar'. 

We all have an ancient habit of drawing lines. If not actual then imaginary. Lines that limit our towns,districts,states,nations... lines that separate one person from another...lines that decide one's limits! All these lines are not actual but are inside us & so vary according to the consciousness within. We are not aware of the power within. We are not aware of the endless potentials lying within. Because of being ignorant of self, we put a bar & decide a limit on our own. We not only stop by limiting our own selves but continue doing the same with others especially our children.

Palak, my daughter, has always proved us wrong. She got an inclusive environment since birth & could use her potentials to her fullest when given a chance. Since last 2/3 years, we are constantly asking ourselves "Did we truly give her all possible chances throughout her life?" "Was it all that we could have offered?" 

Honestly, the answer is 'NO'. 

During her school days, she used to participate in most of the extra-curricular activities. She must be 12 when she registered her name for elocution competition. I called her class teacher & managed to remove her name tactfully. I was guided by the 'BAR' lying within. It took 6 years when I realized how bad was my consciousness & how limiting were my belief systems. Palak was 18 when I had to address a parent meeting. Palak & her dad were to go for a movie after dropping me at the venue. Few parents insisted to meet Palak so the organizers called Palak on stage. One of the organizers asked Palak a question. She went to her, took the mike & spoke for about 8-10 minutes. She spontaneously spoke about her journey till date. Each & every word of her speech was clear, meaningful & motivational. I felt guilty for not allowing her to participate in elocution competition. I felt very small then. My inner frames were limiting her. After that, I have made a point to open my sessions with her speech.

We were to do parasailing during one of our vacations. All four of us were standing in a queue. We saw 4-5 people ahead of us got hurt badly while taking the flight. Three of us started whispering & that was about dropping the idea considering Palak. Palak came to us & said,"Those who got hurt did not follow the instructions. Don't worry I would follow the instructions exactly & would fly safely." She actually did & that too much better than many of us. 

During same holidays she did undersea walk for 45 minutes.

Thereafter we stopped putting  'bar' while on vacation. But as we all are very strong in limiting ourselves & our children, we never thought of removing the 'bar'.

Palak passed her 10th with flying colors & by then several times she proved us wrong for underestimating her potentials. We selected Arts for her ( I am not sure whether we underestimated her one more time by not selecting Science/commerce). Taking admission in 11th was just like taking a chance. Logic, Psychology & Philosophy were her major subjects. As quoted, persons with Down Syndrome cannot go well with logical thinking & philosophy. We expected failures & we had a plan to discontinue after two trials. To our surprise she could understand her subject & was doing exceptionally well in internal examinations without a writer. Two months prior to her 12th board exams a new principal was recruited. Unaware of the procedure, the new principal did not demand a separate block & a writer for Palak. She did not get writer. She managed to complete her exams & got 49% in 12th.

My son was to go abroad for his further studies & we had no concrete plans for Palak after 12th. Palak had a tight & happening schedule till date so it would have been depressing for her to stay alone at home without much to do. My husband asked her to accompany us & help the hospital staff in whatever way she could. The moment she entered the hospital, she started behaving as a staff. She called us 'Madam' & 'Sir'. Palak started learning very fast. We decided to train her for hospital management & she did that for a year. Since past 4.5 years she is an official employee of our hospital.

We thought we did the maximum we could..!!! An invisible bar was limiting us....!! We were under a fad of offering her the best & maximum. We were wrong again!

We realized that we have done nothing but underestimating her every now & often. 

The 'BAR' was always there...!! May be at times we felt happy just by raising the bar a bit but could not think of removing it completely.

On disability day celebration this year, I got a call from one NGO at around 2:15 pm. They said that they were to felicitate Palak & I had to reach to the venue with Palak at 4:00 pm. Since it was a short notice & I was preoccupied I agreed readily without giving it a thought. Palak gladly did whatever they asked. She even gave a speech without any prior preparations. Then she was felicitated by a bouquet & shawl. The reason mentioned was the cycling she did in Italy. She immediately said," All five of us did the same. My bro, my SIL(sister-in-law), my mom & my dad. What is so special that you are felicitating me?" This was an eye opening incidence for us. Why we keep on talking about everything she does. By doing so we are continuously reminding her of being different.

There happened many small incidences but three major happenings forced us to introspect & take action.

The first one when we met Sowmya. During the Bangalore meet in May 2017, the Yoga trainer Sowmya insisted me to meet her with Palak during her stay at Mumbai in June 2017. When we reached Mumbai, Sowmya was busy taking the class for teachers. She asked someone & called Palak inside. I was a bit worried about the language & the interaction that was going to take place between the two of them. To our surprise Palak answered whatever Sowmya asked & Sowmya got so much delighted that she stood up from her Asana(seat) & made Palak sit on her Asana. Palak took the remaining portion of the class.

Sowmya insisted Palak to join teachers' training programme & we have started since January 2018. Mrs Saranga & Mr Bimanji, our Yoga teachers are diligently committed & taking care of Palak's training. We have joined the course affiliated with VYASA, Bangalore.

After completing the basic course she can be trained as a Yoga teacher for special need persons.We would have never thought of going in this direction until her talents being recognized by Sowmya. This is how the 'Bar' works. We condition our minds & so can see only a small portion of possibilities. 

Me & my husband are fond of cycling & wanted to go for a cycling trip to any of the European countries. We thought of dropping Palak to my son's place & do a cycling trip. While talking to my son & DIL( daughter-in-law), it suddenly clicked that why not to start training sessions for Palak for long distance cycling. Again she surprised us by achieving the target within six months. She rode 40 kilometers at a stretch in Italy on 5th October 2017.

Since past 2 years she is not participating in our annual gathering of medical association. Last year we were busy with my son's marriage. I thought that might be the reason for her not participating. This year when she denied, I felt the need to know the reason. After the annual day I sat with her & asked her the reason. Her answer astonished us. She said,"I am fond of dancing & I remember all the steps taught to me but my body doesn't move with the same speed as my mind." O my God....! What a clarity...what an ability of reasoning....!

 I started searching for a dance master who can understand her need & teach her accordingly. The goal was not restricted to learn dancing, it was about overcoming the limitations. After searching for few days, we found a lady, extremely passionate about dancing. The lady, Mrs Shradhdha, already had clear concepts of inclusion & gladly wanted Palak to be her student. When she asked Palak her reason for joining the dance school, Palak said," I want my body to go hand in hand with my mind. Make my body bouncing." Shradhdha was amazed. Both of us joined the school & are going to Surat thrice a week. We are on the Folk-Fitness regime based on Indian folk dances. The concept of Folk-Fitness is unique. We are taught about India & our culture. We are taught about the type of regional dances & the reasons for peculiarity of each. Palak is in regular ladies batch learning everything with meaning.

We were grateful to almighty for showing us direction. We are grateful to Ms Sowmya, Mrs Saranga & Mrs Shradhdha but still the bar was there till 22nd of February 2018 in spite of Palak doing exceptionally well in Yoga & Dance school. What happened on 22nd of February?

I was under the impression that for better understanding of the theory part of both the courses, dance & yoga, I need to accompany Palak. Especially the theory part of Yoga involves too much of spiritual thinking. I used to prepare notes during our theory sessions of Yoga. Looking to the complexity of theory like 'the visible part of our existence & the invisible part, achieving the higher subtler layers of mind, ultimate goal is complete silence..etc.' I decided to form short, exam oriented answers for Palak & according to me she was supposed to prepare them 2-3 days before the exams. I had already believed that the complexity was beyond Palak's capacity to understand. I was under the influence of that invisible 'BAR'.

Then got the convocation date for my DIL's Master degree & we planned to visit her. We went to Germany.

On 22nd evening after having our dinner, my son & DIL asked Palak about what exactly she has been doing. She literally took a session on 'What is Yoga' for 2 hours & 15 minutes. My son has recorded full session. She started with starting prayer. Then she explained everything, what is mind, how it affects functioning of body, why Yoga, how Yoga helps an individual to lead a peaceful life, which is the visible part of our existence & which are the invisible aspects of our existence that too with Sanskrit verses in between. She ended with closing prayer. Honestly I had forgotten almost 30% of what she narrated in spite of preparing notes & look at me, I was to teach her! We all had tears in our eyes. My son & DIL bow down to her & said,"We are too small against you."

Palak compelled us to remove the bar. 

Why? Why we always talk about the 'Bar'? Why we don't just remove the bar & surrender ourselves to the infinite energy of the universe? Why not to expand & diffuse into the endless possibilities & opportunities?

Universe is eager to give in abundance..... 

Just waiting 

for us 

to remove the 'Bar'