Down Syndrome Diaries | Down Syndrome in the Asian Community

Another one of my biggest fears is how Saajan will be accepted in the wider Asian community – will he be able to go to the Gurdwara as openly and freely without glances and stares? Would he even grasp the concept of our religion? Will I be able to keep his hair like Arjun? Speaking to Sarbjit and seeing Gian develop through Instagram as he’s further on his journey, gives me a lot of hope for our future!

My wish is to educate the Asian community especially on what Down Syndrome and other additional needs actually are – there’s quite a black and white perception of special needs within the Asian community due to a lack of knowledge. I pray we are able to move forward as a community and we are able to educate each other through sharing knowledge and information and by being more open.

 

Below, Sarbjit shares her story of an unexpected diagnosis, the stigma attached to learning difficulties within our community and how the diagnosis was received.

7 years ago, our family began a new journey. It has been an emotional, joyous, demanding and rewarding one so far. My husband and I had already been blessed with two children who were 10 & 12 years older than their baby brother Gian.

Gian’s birth added a new dimension to our lives. We had to learn about the world of parenting a child with Down Syndrome.

Prior to Gian’s birth I had no complications, scan’s were normal and I didn’t take any screening tests for our baby. Our belief is that a child is a gift and we would not have wanted any tests even though I was over 35.

Gian’s dad held him just after his birth and kept saying to the midwife “his back seems weak, he feels really fragile”.

I kept replying “it’s because his tiny and only weighs 4lb and we were expecting a big baby”. He will get stronger after he starts feeding”.

No one in the room had said that Gian may have low muscle tone or may have a genetic disorder. We were both very happy and may be they didn’t want to say anything until the Dr saw me in the morning. I would have liked a little more reassurance from the midwife that we will check this out for you in a while. The Drs/consultants went all quiet and the joyous moment for us dampened slightly by their moods. Not knowing why…

I had the feeling when I finally got a moment alone that Gian may have Down Syndrome.

I asked the sisters on the transitional ward if they knew that my baby might have Down Syndrome and they said yes we had an idea as soon as Gian came over to the ward. They gave me the right response. The staff were exceptionally helpful and supportive.

The Dr’s came to see me in the morning and they didn’t hand me anything to read (which was great) just spoke to me about the characteristics that may suggest that Gian has DS. They decided to send Gian’s blood tests to confirm whether Gian had Down Syndrome. The results arrived 4 days later.

In that time Gian had very low blood platelet levels and jaundice too. We were not allowed to leave the hospital until his platelet levels increased. He didn’t have any other health issues at the time. Gian had to keep having blood taken from the heel and I was then told the sample provided wasn’t sufficient and we need yet another sample. It was a little distressing and sometimes the Dr’s (junior) didn’t seem confident and would also make a mess.

Gian wasn’t feeding well and I had to express and we fed Gian through a little plastic open beaker. It was fantastic to see him sipping away but his sucking was weak and the milk would dribble out from the sides of his mouth.

However, the hospital electrical pumps were a life saver and tempted for me to invest in one too. There was no advice given at the time from staff on different bottles or nipples that might help Gian’s feeding at home.

On Day 5. We were taken into the Sisters office with two Dr’s that had been seeing Gian over the last 4 days. It was confirmed that Gian had DS. The staff looked a little sad as my husband was very upset. But I was so positive and ready for the beautiful journey I was about to take. We were given a letter from Sister to open at home. It was the poem about going to Italy and ending up in Holland. We met the paediatrician on Day 6 and she was very informative and told us how things will be over the next few months. But she said Gian is your son first. Go home and enjoy your baby.

My experience in hospital was very positive.

How we both told our close family and friends:

We sent one text message. Same time. The same message.

Yes we got some sorry’s and questions to whether we took any test before ours son was born.

I am fortunate that I was able to tell my in-laws, parents, brothers and sisters in a clear and calm way and communicate how I was feeling and how I would like them all to be involved in Gains’ journey too. I wanted them all to see and feel my passion for Gian to grow and develop in his own unique stages in life.

When I came home on day 7 is when it had hit me that my little baby boy I have bought home has a DS. I looked in to the mirror as I placed him into his cot and said “Why me?”. I didn’t cry but I did everything I could to support my little boy and get all the things that he would need to help with his feeding. Gian had no complex issues with his health.

Within the Asian community there are families with children that have learning disabilities and they have not supported each other. There are negative attitude towards children with a learning disability. There is a lack of awareness and understanding with regards to learning disabilities within the Asian community and it is the child that may fall behind because of the lack of early intensive interaction and intervention.

Within the Sikh community we have had to deal with misconceptions and negative attitudes in relation to Gains’ disability. However this has not deterred us from seeing the potential in our child and also tackle and dispel some of the attitudes in the community.

Gian is very welcomed at the Gurdwara and is missed by the Sikh community if he does not turn up on Sunday. He has integrated well and learned the routine and enjoys attending his place of worship.

Gians hopes for his future that he is content, health and to be reach his full potential and to be accepted in the wider society for who is and not what society wants him to be.

Gian is the best thing that has happened for our family.

Love Sarbjit & Gian xx

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.