Surya Hosein: Do not give up

BAVINA SOOKDEO

“Try to do everything, do not give up!” This is the message that Surya Hosein sent out to people with Down syndrome. Hosein, 31, was born with Down syndrome, something which came as a shock to his parents. Despite the many difficulties that people with Down syndrome face to be fully integrated into society, Hosein’s integration thus far, is quite admirable. Today, he interns at IMAX where he finds new friends and meets people who inspire him to learn new skills and understand the working world.

Hosein’s parents, Steve and Shelley shared their fears and explained the challenges and triumphs of having a child with Down syndrome. The journey is no easy one.

When Surya was born, he looked very Chinese but it came as no surprise since his mother is of Chinese descent. He had to stay in hospital for nine days due to jaundice.

“When he was discharged from the hospital, a dear friend who is a paediatrician, told us that she wanted him to be tested for Down syndrome, due to his floppy body and a few other signs, only she recognised," said Shelley. “What a huge shock that was!”

She and her husband never knew much about it except from seeing a couple people with Down syndrome sitting by windows, mostly hidden away from the rest of the society.

Another challenge came when breaking the news to Surya’s siblings. “We also had the horror of explaining to our other three children, who had just lost their youngest brother, that this new brother is very different.” Thankfully, Surya had no heart problems, which is a regular occurrence in children with Down syndrome.

“The library had one book that explained about Down syndrome and didn’t give much encouragement for the future. We were desperately asking around for information regarding helping this baby to develop the basic abilities,” Shelley explained. Their fears were many. “Will he ever be potty trained? Could he go to school? Which school is capable of teaching him? Who will care for him when we pass on?”

It was then Shelley thought of the late Helen Humphrey’s granddaughter, Rebecca, and the fact that Helen could give them more information. “Our visit to their home and meeting Rebecca, gave us much hope that maybe Surya could live a good life with much assistance, but note well, he could never be totally independent, he would always need someone to guide and protect him in many ways, as these children are very trusting, hold no prejudices and are very loving, the latter being their most important and outstanding feature. We just hoped that somehow we could get him to at least take care of his most basic needs, so his caregiver will not be burdened.”

The main challenge Surya’s parents faced was a lack of information and evidence of success stories.

“Lady Hochoy Home was very helpful. There, I met a physiotherapist who made me understand the value of exercise and massage and the term “forced parenting ...whereas the normal child will roll over spontaneously and start to walk at a certain age, we had to teach him how to roll and make sure he was often encouraged to stand, while moving his feet in a walking motion and so on,” Shelley explained.

To encourage speech, they didn’t give Hosein things without his effort at making an appropriate sound for the item.

“These practices were made a little easier, as he had older siblings who assisted and many family members while visiting, learnt to massage and encourage him at every step of his growth. It really does take a village to raise a child.”

Surya has three brothers and one sister who have always been there for him, challenging him and supporting him as much as they can.

Having a child with Down syndrome has reinforced the parents’ belief that all things are possible in life with lots of love, patience and compassion.

“We were very fortunate to find a few educators with those qualities who were able to get Surya to learn to read the basics and do simple addition, but without constant practice he quickly forgets his maths skills.”

There were no special schools with teaching aids, etcetera, so Surya attended a regular nursery school run by Cheryl Samuel. He then attended a school that a few parents and teachers started at the National Association for Down Syndrome compound, accommodated by Lydia Pierre, who was in charge at the time. Shelley said Pierre was very supportive as her son with Down syndrome was progressing very well. “He was an inspiration to us all he could ride a bike and that gave me hope.”

As Surya became a teenager, his parents decided to move him to Goodwill Industries where he was exposed to different trade skills. With the deep love and firm discipline of Barbara Alleyne and her staff, Surya learnt a lot about basic living skills including some cooking skills.

“We are still cautious with his use of a bread knife.” Shelley noted that "schooling costs were not much different from other private schools and certainly not as expensive as the fees of private schools today.”

It was just about ten years ago Steve and Shelley heard of the Down Syndrome Family Network, founded by Glen Niles and Lisa Ghany. Since joining and participating in the workshops, Buddy walks and conventions, Surya got an opportunity to develop his confidence and social skills even more.

“People with Down syndrome are naturally very friendly. As a teenager, Surya was introduced to taekwondo by a cousin and realising that the other regular sports like football/hockey, etcetera, were not an option for him, we asked the taekwondo sensei Cheryl Sankar if she could handle teaching Surya and if her other students would accommodate him without ridicule. These were our main concerns. Fortunately, she had experience with a young man with Down syndrome before so we were so happy and Surya’s self-esteem started to climb” beamed his mother. Surya has obtained his first degree black belt (although it took him about ten years but he did it!).

His smiling mother explained, “The term ‘special-needs’ children is so true of children with Down syndrome in so many ways, but his speciality is in being very loving, impartial, kind and quickly forgiving. Physically, he is very strong and has become a great asset to us as we age!”

So what would Surya’s parents like to see happen for children with Down syndrome in this country?

Shelley said, “In recent years many children with Down syndrome have been accepted into “regular” schools at the Montessori and primary levels...alas!...but we would love to see special-education teachers trained and placed in schools so that our children can have the opportunity to reach their fullest potential intellectually in the regular schools. The private schools that may accept students with special needs are very expensive and are not always well equipped with teaching aids.”

Shelley stressed, “Our society needs to become more inclusive of people with special needs because so many of them just need an opportunity. They need to be treated like any other citizen of TT.”

Surya’s father added that a ministry is needed just to deal with people with all kinds of disabilities.

“Parents with children with Down syndrome must join the Down Syndrome Family Network so we can lobby for greater awareness of the meaning of Down syndrome, awareness of the capabilities of these people who have the desires and dreams like other regular people...driving a car, getting married...maybe there could be assisted living for the Down syndrome community as happens in Holland,” Steve said.

“At this point in time, it is difficult to even imagine Surya in a serious relationship, although there is a young woman with Down syndrome he has known from primary school and they consider each other ‘boyfriend and girlfriend,’ but they hardly see each other in person and I'm not sure if we, the parents, could manage such a relationship,” said Surya’s father who added, “we need more information on these topics.”

Surya’s parents thanked IMAX for the opportunity her son was given to join their family. “There, he is included in all their activities and fully supported on Down syndrome Day when the entire staff ‘rocks their socks.’ They also thanked the Down Syndrome Family Network. Surya will be modelling at the Network’s fashion show – Fashion for us.

Asked what he does at IMAX, Surya explained that he helps in the ushers area, tearing tickets, giving out 3D glasses and sometimes taking food orders to the Gemstone Cinema upstairs.

He has travelled a couple times to visit family and to represent TT in taekwondo games with other special-needs athletes. He loved the experience but didn't win any medals. In the Special Olympics, however, over the years, he has quite a collection of medals for swimming and bocce. His main hobby is listening to soca music. He is a great fan of Machel and Kes and keeps his parents updated with the new songs from all the other artistes as they are posted on YouTube.

Surya is fond of the movie, Bazodee, because Machel Montano is the star and he deems himself Machel’s number one fan although he often says it in reverse. His favourite food is pelau (which his father is teaching him to cook) and curry.

Kudos to Surya Hosein on his accomplishments.