Living with a Child who has Down’s Syndrome in the British Sikh Community.

Disclaimer: This article contains information about our Son (Sehaj Singh) and our lifestyle as a family. This is my own personal view which I have formed from my own experience as a parent and as an advocate of Downs Syndrome.

– Written by Dr Kamaljit Kaur –

This article is about our son, Sehaj Singh who has Down’s Syndrome. This article is about our journey thus far, of living with a child who has a disability in the British Sikh Community. Hukam, is what it all boils down to at the end of the day. Whatever happens to us, ‘good’ or ‘bad’, it is our pre-ordained destiny. How we deal with it is what determines our true happiness. Fast forward to today, March 2020, and life is beautiful. However cliché that that may sound, life truly is. We have found ‘acceptance’ to play a big role in making our life so beautiful, acceptance and our faith in our Guru Ji. “Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And, if you’re lucky, they might be the teacher who turns you into the person you’re supposed to be”.

The day Sehaj Singh was born will be forever etched in my heart, soul and mind for quite possibly different reasons to other first-time mothers. It was the day we were told we had a beautiful baby boy, who also had Downs Syndrome. Sehaj Singh entered our lives on 3rd December 2014 late afternoon. The midwife placed him on me and the first thing I noticed about my gorgeous new-born was his eyes. The midwives then whisked him away for weighing. When I asked to hold my new-born again, I was requested to wait as they had a suspicion, he had Trisomy 21 (also known as Downs Syndrome). My husband and I just looked at each other, call it our lack of awareness or even our ignorance, we did not even know what Trisomy 21 was, and so our journey into Downs Syndrome had begun.

Hearing that our son had a disability was extremely hard, my own initial feelings of despair, heartache, pain and pure anguish are still hard to forget. It wasn’t Sehaj Singh’s fault, it wasn’t our fault, it wasn’t anyone’s fault. This was Hukam and it was our duty to abide by His wish. In retrospect, and 5 years on, I sometimes ask these questions; why did having a condition have to be negatively classed as a ‘fault’? What was I scared of? Why was I even scared? Why was I fearful of our future? Why? Is it because our society has a misconstrued and preconceived notion of ‘perfection’? Sehaj Singh is perfect to me as he is exactly how our Guru Ji wanted him to be, and He can do no wrong. It was I that was imperfect and lacking and Sehaj Singh was sent here to carve me into being the perfect mother for him. It isn’t all a bed of roses mind, but what in life actually is?

My husband works away a few days a week, and this involves a lot of driving, consequently the bulk of Sehaj Singh’s daily routine and appointments fall onto me and there are quite a few! Sehaj Singh has regular Speech and Language Therapy, Occupational Therapy, as well as ongoing check-ups with the Paediatrician, Dietician and Nutritionist. Sehaj Singh has been discharged from Physiotherapy as he has been walking since he was 2 years and 8 months, however he is still a bit unsteady on his feet but with Guru Ji’s Kirpa, Sehaj Singh is making great and steady progress. School appointments with Sehaj Singh’s teacher include meeting with his Teaching Assistants, the School Integrated Disability Services (IDS) and the School Special Educational Needs & Disabilities Coordinator (SENDCo). The meetings are needed to keep on top of any changes in intervention plans, reassess learning objectives, behavioural concerns, ways forward and not to forget to actually celebrate the wins!

Sehaj Singh becomes extremely unsettled if he hears sudden sounds/noises, and also high-pitched sounds/noises. Some examples are babies high pitched crying, shrill screams, clanking of cutlery, interference signals of the TV. This causes him to get extremely distressed and Sehaj Singh will cover his ears as it would prove to be a sensory overload for him. Sehaj Singh will cry, and even lash out at anyone trying to console him, however the Occupational Therapist in Sensory Integration has helped reduce such episodes with providing intervention strategies which are practiced at school and home regularly. Ear defenders can sometimes be used in order to reduce noises, however Sehaj Singhs finds them to be irritable and uncomfortable so he does not wear them for long periods. Conversely, Sehaj Singh absolutely loves listening to Kirtan really loudly, and this does not bother him in the slightest. Sehaj Singh loves playing on his tabla, and the harmonium. He listens to Gurbani from Harmandir Sahib Ji every morning and evening and loves to ‘sing-along’ and ‘play-a-long’. Our Guru Ji has helped Sehaj Singh’s development tenfold and their benevolence holds no bounds, it is our mind that needs re-conditioning to what our community has primarily pre-conditioned it to.

There is a lot of work involved, be it paperwork, appointments, meetings and therapies, and I definitely don’t want to scare anyone, but I am just highlighting our reality. With Guru Ji’s Kirpa and Himmat this is all second nature to me now. This is my ‘normal’. I am just doing whatever I need to do in order to make Sehaj Singh’s journey in this life smooth, just like any other mother would do for her own child(ren). My husband currently works full time whilst I have taken a step back from work to fully concentrate on Sehaj Singh and all that is involved in his upbringing. This was a personal decision and may not be applicable to everyone, however it works for us. I am often asked what I do all day. The above is nothing short of a full time job but as far as our community is concerned, I am ‘just sitting at home’.

As mentioned, there is a lot of work involved but there are also a lot of positives too. Sehaj Singh loves socialising, he loves meeting new people and is extremely generous in showering everyone he meets with big hugs. He loves his musical instruments, he loves listening to Kirtan and singing. Sometimes I catch him playing on the ‘tabla’ loudly exclaiming ‘Wa-Goo’. For me to hear Sehaj Singh singing in our Guru Ji’s praises is nothing short of amazing and so heart-warming. Sehaj Singh says a few words, he is also learning to sign to help bring on his talking. He loves painting, drawing, watching Mr Tumble. He loves running havoc and fast rides! Most recently, Sehaj Singh has started horse riding aka hippo-therapy. ‘Hippo therapy is an effective tool for children with Down Syndrome because it provides sensory stimulation to the muscles and joints, improves balance, body awareness, and postural control’. This is fantastic for children with low muscle tone as it is a means of improving coordination, balance and strength. Sounds pretty ‘normal’ right? That’s because it all is. Children with Down’s Syndrome do things, although at a slower pace than a typically developing child, but they do. It is our duty as parents to facilitate and nurture our children, regardless of disabilities. We need to have faith in them, we need to imbed into our children that they can do anything that they put their mind to, our job is to assist not resist

Naturally, our families were initially shocked with the diagnosis but that did not waver their unconditional support for us and our new born. Their support is what helped us to come to terms with the Sehaj Singh’s condition in the initial months. Regrettably, I cannot say the same for certain members of our community. We take Sehaj Singh to the gurudwara and we get stares, tuts, shaking heads, and I cannot even tell you how many times I have heard the words ‘bechari’, ‘bechara’, ‘koi na’, and that this is my ‘sewa’. First of all, I am a mother to Sehaj Singh, condition aside, being a mother is my sewa. I do not have a bigger sewa than a mother that has a typically developing child, please do not give me such an accolade.  We must not take away from other mothers who are also doing an amazing job with their child(ren). I have been given sympathetic ‘pats on my back’ to have faith and to continue and that ‘everything will be ok’. I am probably appearing rather cynical and unappreciative of such gestures but please believe me when I say everything truly is ok, my faith has never wavered throughout this. Yes, we went through a time of questioning ‘why us’, but that was short lived. We do not want sympathy, the world needs more empathy, love and compassion and most importantly, acceptance.

We live in a predominantly non-Asian area, and no one here has ever given me any pats on my back, tuts, stares. If anything, they all look at Sehaj Singh, kneel down, make eye contact and say hello to him which he lovingly reciprocates with a hug! Sehaj Singh has a lovely group of friends at his school and his peers are so loving and caring towards him. Sehaj Singh and I went to the Gurdwara and I was asked ‘teek ney ah’ (isn’t he well) by a ‘siani bibi’ (clever girl) as she stared at Sehaj. She could have innocently asked as maybe she felt so as Sehaj Singh walks differently, is pretty much non-verbal, or wasn’t following instructions diligently? God knows. She told me her husbands, brother’s daughter was also ‘like this’. She told me to take Sehaj Singh to India, and get his brain operated on and he will be ‘normal’ again. Now, please tell me what do I say to this? Down Syndrome is NOT an illness, it is a chromosomal/genetic abnormality which occurs at conception, it is a condition. Some people choose to be ignorant as it’s easier than showing empathy and actually changing their current mind-set. Let’s try and be more understanding and have some compassion. It is what our religion is all about. Actually, it’s what being a human is all about

Another time, we took Sehaj Singh to the Gurdwara and there was Kirtan going on. He got so engrossed in the Kirtan, and due to Sehaj Singh having difficulty in regulating his behaviour, he started flapping and shaking his head back and forth. This behaviour is synonymous with Down ’s syndrome and Sensory Processing Disorder. Sehaj Singh was also making sounds as to show his appreciation of the Kirtan as he loves listening to it at home too. A Sevadaar approached me, and we were asked to move to the back of the hall as we were stopping others from enjoying the Kirtan, as they were doing so in silence. We had to move a very distressed Sehaj Singh outside of the Darbar Hall as he didn’t know what he had done wrong, he had no understanding of it. As far as he was concerned, we were stopping him from enjoying Kirtan. What do I do? I understand there are rules and regulations which we must follow in a Gurdwara, but do I stop taking him to the only place where we truly get peace? If we can’t go to a Gurudwara, then where does that leave us? Luckily that has only happened a couple of times but it has still happened.

I am constantly asked if Sehaj Singh goes to ‘normal’ school. May I ask, what is normal? There is something called a mainstream setting and a Special Educational Needs (SEN) setting and Sehaj Singh currently goes to a mainstream setting. We are aware that a SEN setting may be required for Sehaj Singh in the future, however we will deal with that if and when the time comes. Sehaj Singh is flourishing in his current school and that is because he has a strong Education, Health and Care Plan (EHCP), which we have worked extremely hard for. It outlines any special educational needs a child has and the provision(s) a local authority must put into place to help them. It is a tough document to write, as you literally have to write everything your child cannot do, and what help they require. One particular battle we had was for Occupational Therapy for Sensory Integration (OT SI). There was a 2.5 year waiting list however we couldn’t afford to wait for so long as that would have an effect on Sehaj Singh’s learning and development. We managed to find an independent company to get an OT SI assessment, have the report written, and authorised by the local authority within 3 days. Now Sehaj Singh has fantastic OT support in his mainstream setting by the LA.

We are incredibly grateful to Guru Ji that we can obtain such things, there are some families that struggle with the LA, and some that do slip through the net. You literally have to be on top of everything. For us this was a huge achievement and a massive weight off our shoulders and then to be hit with the ‘normal school’ question is soul destroying albeit extremely trivial in the bigger scheme of things. Some of the questions that I have been asked include…. Does he talk? What is he saying? Take him to the Doctors as he doesn’t talk. Why does he walk like that? Does he not understand me? What’s wrong with him? Is he sick? What does he do at school all day? I bet he just plays all day? Just some of the questions which I have come across from some naive people. There is nothing wrong with Sehaj Singh. Sehaj Singh is not ill. Sehaj Singh has a structured timetable at school that has been tailored especially for him in order to support him in his learning and development.It has some element of play involved, as well as work on tactile play, fine and gross motor activities, occupational therapy, speech therapy and sensory circuits.

Sehaj Singh has an extremely packed day! But I ask you, when you know there are obvious physical differences, do we need to ask questions in an insensitive manner? I am all ready and willing to answer any questions about Sehaj Singh and his condition, as long as they are asked with a genuine heart and willingness to learn, and the need to want to educate yourself and others around you.

I am fully aware of how negative the above experiences sound, but they have been our reality. I just wish, and live in the hope, that we can change our community’s view of children with disabilities and/or developmental delays. A disability is nothing to be sorry about, there is no need to give sympathetic glances our way, if you have a question, simply ask us. Please don’t make assumptions about how you think our life may be with a child who has Down’s Syndrome. It really isn’t as bad as you may think, actually, it isn’t bad at all! Sehaj Singh is our beautiful blessing in disguise and I wish you all could get to know him before you make any assumptions.  Sehaj Singh is exactly how he should be, he was sent to us in his most perfect form, it is our communities warped view of ‘perfection’ that may stop people from initially seeing that.

With Guru Ji’s Kirpa, I am mentally stronger, but it has not always been that way. The first few months were extremely difficult, especially when I had to listen to painful comments from others. Then literally one day it all changed, call it divine intervention or spiritual enlightenment, but it was almost a penny dropping moment. The bottom line was that Sehaj Singh was entrusted to us by our Guru Ji, so why were we making it about other people? Why were we letting other people’s comments affect us? At the end of the day Sehaj Singh was a new-born that needed love, care, patience, and nurturing, just as any other typically developing child, Sehaj Singh had needs that were no different to other new-born’s needs. Yes, as he grows, there are certain features and traits that will set him aside from other children, but that just adds to Sehaj Singh’s uniqueness and quirkiness. With continuous unwavering love, care, patience, and nurturing, Sehaj Singh will be exactly who he is meant to be, and I always pray to our Guru Ji that I can be the mother that Sehaj Singh needs me to be. We had, and have, a duty towards our Guru Ji to unquestionably abide by his Hukam, and that is quite simply to provide and give Sehaj Singh the best life that we possibly can, and that we will. Why wouldn’t we? Sehaj Singh is our child, whose needs are just a little different. It is not at all a matter of lowering our expectations, but just the simple fact of adjusting our parenting approach towards Sehaj Singh in a manner that suits him, that is all. 

Our faith is unwavering and unshakeable, and to see Sehaj Singh flourishing and happy brings so much peace to our heart, and it makes all the initial hardship completely worth it.  Yes, we still do have our worries, but what parent doesn’t? My daily humble Ardaas (Prayer) is that our Guru Ji continue to guide us and shower their beautiful blessings on one and all, in whatever way He deems best for us – without us questioning anything. I just hope and pray we are able to do this journey justice. We do still hear the odd comment, but thankfully they are few and far between and such comments are now like a water off of a duck’s back and we only have our faith to thank for that. Naam, Simran and Sewa can get anyone through anything. The Pangati that comes to mind is “Man Jeete Jag Jeet” (Conquer your own mind and conquer the world) (Guru Granth Sahib Ji, Guru Nanak Dev Ji, Ang 6).

My advice to other parents would be, once you feel ready, to get out there and talk. Talk to local support groups, join Facebook groups as there is a wealth of information on there from other parents who have already been through what you are possibly going through, find out what your ‘Local Authority Offer’, what your child has a right to and is entitled to, speak to your child’s SENDCo. Do not be scared to ask for help, for if you don’t ask you definitely won’t get. Also, please do not worry about tomorrow, tomorrow is not promised to anyone but today is. We are living in the here and now. I appreciate we do need to plan for our children, but if it causes you mental tension, it really is not worth it. Only deal with what you can, and build your confidence slowly. One step at a time. You are your child’s advocate and you need to do everything in your power to make sure your child has the tools he/she requires for their learning and development in school and most importantly, in life.

I cannot stress this enough, please take your time in everything. Take time out for you, in understanding your child’s diagnosis, in the acceptance process, in learning to love the precious soul that has been sent to you from our Guru Ji. Do not worry about what other people might think or say, as that is totally irrelevant, and your precious time should not be invested in such negativity. You need to be in perfectly good health to love, care for and nurture the child that you have been entrusted with. At the end of the day, it isn’t about you and people, it is about you, your child and your Guru Ji.

A Message To My Sehaj Singh:

I have absolutely no idea where the past 5 years have gone but I can admittedly say it has certainly been an eventful journey thus far, full of ups and downs, laughter and tears, happiness and memories made.

You are exactly how Guru Ji wanted and want you to be and we dare not ask for anything else for He knows what is best for you and us, no matter what anyone thinks or says. You are deserving of everything that this world has to offer my sweet boy. Sehaj Singh, I pray for you to lead a life full of acceptance, happiness, contentment and most importantly, a flourishing life that allows you to reach your potential and for that we must never ever forget our Guru Ji, for only They can guide us in guiding you. The world is yours and everything in it!

If you would like to know more about Downs Syndrome you can click here or if you would like to contact me you can find me on Instagram.