A different parenting journey: Ongoing difficulties and developing resilience

Nothing prepares you for how much change is brought by becoming a parent. Once you have a child, you put someone else’s physical and emotional needs first. Having a child with additional needs however, completely shifted the paradigm we expected and brought a momentous change with many challenges still newly surfacing in our daily lives.

Despite this, it was in embracing the challenges and constantly striving forwards towards the mindset of realising we had a blessing in our family. Our third child created a wholly special, distinct experience which has forever enhanced our lives, opened our eyes and allowed us to love with all our heart, and the family and friends surrounding us.

Pregnancy & Diagnosis

In 2010 I was a Civil Servant, married, living with my two children and their grandparents. When I received the results that I was pregnant, my response was filled with disbelief: “Really? Are you sure I am pregnant?!”

During my pregnancy, I attended routine pregnancy checks. My husband and I decided not to have any additional screening tests, as we have always believed each child is a gift of life and we accept whatever God graces us.

In February 2011, our baby boy arrived ten days early. Our eldest child decided to name her new baby brother over the “phone”. The naming ceremony, the first ceremonial act a Sikh has, was done over the phone as I was still in hospital with our new-born. She named him ‘Gian’ - meaning divine knowledge/wisdom. The day before we named Gian Singh, we were given a diagnosis that he had Down Syndrome. I carried on nurturing my baby boy and gave little attention to his diagnosis.

We shared our news with family and friends via one broadcast text to all about our new-born and how we wanted them all to be part of Gian Singh’s journey too.

I always use positive phrases ‘Congratulations’, ‘Wonderful’, ‘Joy’, ‘Happy’, ‘Delighted’, ‘Lovely’ when someone shares their good news of an addition to their family, as there would be no reason not to. However, the initial reaction we received from certain family and friends inferred a more sympathetic, apologetic tone as they understood this to be bad news. Several replies included:

‘So sorry!’

‘Did you not get tested?’

‘Did you know?’

As Sikhs, my husband and I see all life as having value and that God resides within us all. We had no screening tests with our eldest two children. If we knew that there was a high chance of any genetical condition for our baby, we still would have continued with the pregnancy, as we believe only God gives and takes life – he is the creator of all and destroyer of all and is ever-present within us all. Everything is Guru Ji’s Hukam – The will of the Almighty Lord. It is a tough path to adhere to, but it is all part of God’s plan and it is up to us to take everything as “mittha” (sweet) by starting with compassion.

Alternative Futures

On day seven, we came home with Gian and it was then when it hit me that my little baby boy had Down syndrome.

I began to imagine two different futures for our new life. One being a positive future including goals, dreams, and what Gian might accomplish in the future. Then the other of me dwelling on an undesirable future and speculating on problems that may possibly appear in the future. My emotions were being pulled in opposite directions.

I was overwhelmed by these emotions and I began to spiral down into depression which went on for a few weeks. I vitally needed those weeks to re-frame, adjust and focus on the realities present. I was grateful for all the people supporting myself and Gian and came to the realisation there are going to be good and the bad days. This was no different to life before this and all you can do is stay in ‘Chardi Kala’ (high spirits). I stopped the chatter of mind and began to enjoy giving Gian my full attention again, rediscovering my maternal instincts and appreciating the love surrounded by my household adoring our lovely new-born. Despite the vast prodigious emotions, I practiced one step at a time and embraced each moment with Gian with understanding and love.

Raising Awareness

Gian’s birth added a new dimension to our lives. We had to learn about the world of parenting a child with Down syndrome, whilst learning that there is a lack of awareness and understanding when it comes to learning disabilities within the Asian community.

Within the Sikh community, we have had to deal with misconceptions and negative attitudes in relation to Gian’s developmental delay and learning difficulties. However, this did not deter us from seeing the potential in our child and to dispel some of the myths and negative attitudes in our community. There are a plethora of examples to share but we had one instance when Gian was aged one and the Granthi (head priest) at the Gurdwara, Sikh place of worship, said to me that I had not taught my child how to keep his tongue in his mouth. I explained to him why Gians tongue has a tendency to stick out and that this goes away during infancy as Gian’s tongue control improves. It was my role to educate the Granthi so that he understood and hope that he would not to be judgmental in the future.

Myself and my husband were involved in creating a piece for BBC Look North who focused on Gian’s individual story and the societal stigmas that can surround attitudes towards disability and we also took this as an opportunity to dispel any myths alongside that. For the most part, we were lucky as we had a good network within our local Gurdwara and Gian Singh became positively known by all, by attending Gurdwara every week, going into a spiritual trance whenever he is there. We also raised awareness with the motive of helping other Asian families to not feel rejected by their communities and expressed the need for dialogue, and outlined that there should be no blame or stigma attached to their child who has learning or physical disabilities.

Building a new Identity

After Gian’s first birthday, I was still on a career break for a further four years. I wanted to make a decision about when or whether I wanted to return to my civil service career – it was a huge question mark. I began to befriend new mothers with children that had Special Educational Needs or Down syndrome and some who were a little further on in their journey than us. I began to find and connect with people on social media who inspired me and had similar journeys.

I listened to my instincts and decided to resign from the Civil Service and have a career change, which allowed me to focus on my time with Gian. I had to prioritise and think about what really enhanced my life, as we had to tighten the financial budgets, which was hard on my self-esteem. I had a new focus to educate and raise awareness of Down syndrome and learning difficulties. I knew that Gian’s developmental journey was going to be different to my other two children, so I introduced interventions earlier to help him with his progress. I became his speech and language therapist, play therapist, educator and advocate.

Support Groups

Gian had different challenges and I was occupied in learning and organising myself to help Gian. I remember making that first phone call to ask for help. I cried after I put the phone down. I thought that I would not have a breaking point and that I am good at solving problems. Even I needed advice, ideas and an insight and opinions of other people. The people I surrounded myself with made me stronger. I made friends and they explored my problems with me and understood our journey. I know today I am doing the same for others too.

I became a trustee for Leeds Mencap and organised a fundraising event to raise awareness of local Down syndrome charities for the Asian community. The event was called ‘Slice of India’, an Asian Arts themed tea party, with Indian classical music and dance. We had 220 guests and raised £4000. The highlight of the event was a specific joint dance project I created, which was a collaboration with Kathak dancers from South Asian Arts UK (Saa-uk) and Leeds Mencap Dance group called Me2.

I continued my career as a support worker for Sunshine & Smiles – Leeds Down syndrome network and worked with many new families. Alongside my role as support worker, I continued to share my personal stories with Asian bloggers and Asian newspapers. I also trained medical staff in hospitals and delivered sessions about sharing the news of a diagnosis and providing a perspective from the Asian community.

I started an Instagram page to share our parenting journey and Gians development. Families began to get in touch and share their stories and feelings. Some of the conversations started with a question such as “Hi. My X has Down syndrome. I just wanted to know how it was when you took your son to a family wedding or his first Gurdwara trip?”

Gian taught me a lot about pacing myself and breaking things into small steps. I tell families that each child is unique and as parents, we should focus on their different needs instead of making comparisons between children’s varying abilities. I support several Asian families across UK living with a child with Down syndrome or Autism and provide advice about schools, transitions, resources, family struggles, behavioural challenges, milestones and much more.

Dual Diagnosis – Autism & Down syndrome

At the age of six, Gian was diagnosed with Autism and his Autism became his primary need. Learning can sometimes be a hardship for Gian, therefore we implemented different styles of teaching, resources, additional equipment and adaptations which were needed to help Gian to reach his full potential. We include him in everything we do as a family. We adapt so that he can enjoy life. Our life revolves around Gian and we are all the happier for it. He has taught me a lot about Special Educational Needs (SEN) and that is why I found a new direction in life. I am now following my interest in SEN and communication and setting up my own consultancy.

Rise to the challenge

Life will not stop throwing challenges at us. Worrying about the future takes us away from experiencing the here and now. We find the strength to meet these challenges, we adapt, and we accept it.

During COVID19 lockdown it has been challenging for Gian to adjust to a new routine. He likes going to school and learning with his 1:1 and peers. Home learning is continuous in our household as we all support Gian's learning difficulties. My husband and I have been working from home and giving Gian 1:1 support during the day. Gian will only engage in play or an activity through instruction or support. He does not mess up the house with toys and keep himself busy in play. We actually would both love him to do that. It takes a lot of patience, compassion and understanding to make Gian's learning effective and easier for him. There are a lot of families on a similar journey and we are all doing our best with what resources we have.

Gratitude

Gian gives us so much joy. He is doing really well at a mainstream school. He is the local hero at school and all his peers, teachers and parents all support, engage and treat him with kindness. He loves to sing and has an amazing voice. Gian has taught the whole family so much. He has bought me closer to Vaheguru (God), made me evolve into a more caring, and loving person. He has given us so much and he is only nine. Gian sits on stage every Sunday at the Gurdwara for 90 minutes during the Asa Di Vaar (Sikh prayer).

We are all special. We are all different.

I hope that this sharing gives you an insight to some of the challenges as an Asian woman with a child with learning difficulties. I will continue to raise awareness, give a balanced perspective and dispel all negative preconceptions about Down Syndrome and Autism.

Sarbjit is an advocate for the often-overlooked parts of our community.

Sikh Elders Service – Community Support Worker

She provides 1:1 to support to Sikh Elders. They organise and facilitate group activities, peer mentoring workshops for the Sikh Elders around the support their mental health and well-being.

Communications & Engagement Lead – Sikh Alliance Yorkshire

The organisation run themed events and facilitate positive conversations to increase community cohesion and to bridge communities who feel isolated.

Kaur Communications: Communication Consultant

Sarbjit is an SEN Parent Coach/Mentor working with families in UK and abroad sharing language development and communication strategies. She also produces digital information in Punjabi for the Punjabi speaking community.

Instagram: @sarb_gian Twitter: @SrbjtKr