Where Are Our Disabled Sikh Children?

[Guest autismmum]

We feel alot more support and acceptance is required and sevadars need to more true to the principles of Sikhi when we visit the Gurdwara. My beautiful, brave, courageous son has severe learning difficulties and autism. He is 7 years old and is non-verbal and with Waheguru's kirpa we have blessed with remarkable progress in his development. I have been told to 'develope a thick skin' and be more in my Sikhi when I ask for support - these alongside with the disgusting looks we get are very unhelpful. My son has expressed an interest in his Sikhi (enjoys watching images of our beloved Guru Ji's and listens to short bursts of Japji Sahib on his Ipad). I know my son's behaviour can become challenging and look odd but I passionately beleive he is also entitled to his right to spiritual development. The more he visits the Gurdwara these behaviours will decrease.

I would like to hear from other parents with disabled children/adults - you have my best wishes.

[puneetkaur]

We feel alot more support and acceptance is required and sevadars need to more true to the principles of Sikhi when we visit the Gurdwara. My beautiful, brave, courageous son has severe learning difficulties and autism. He is 7 years old and is non-verbal and with Waheguru's kirpa we have blessed with remarkable progress in his development. I have been told to 'develope a thick skin' and be more in my Sikhi when I ask for support - these alongside with the disgusting looks we get are very unhelpful. My son has expressed an interest in his Sikhi (enjoys watching images of our beloved Guru Ji's and listens to short bursts of Japji Sahib on his Ipad). I know my son's behaviour can become challenging and look odd but I passionately beleive he is also entitled to his right to spiritual development. The more he visits the Gurdwara these behaviours will decrease.

I would like to hear from other parents with disabled children/adults - you have my best wishes.

I love your attitude, the affection and the faith that you show in your child.. Its great to know that he is progressing good with Maharaj's blessings.. Parent's attitude, understanding of their child's needs, love, support also help children with disabilities to a large extent.. Acceptance from people outiside the home, at Gurudwara is very important and he is very much entitled to respect just as any son/daughter are.. Other members may be able to help you more.. I do wish you all the very best as you see you son progressing amazingly well with Maharaj's Aasraa!

Thanks for sharing..

Bhull chuk mauf karna ji.. :waheguru:

[VanHelsingh]

The Gurudwara I go to has a fair number of children with Down's Syndrome who attend on a weekly basis. Obviously they come with their parents and I think it's wonderful because it's very easy for our people to keep these kids "hidden away" from the world. It's a positive reflection on the parent's faith that they aren't blaming Waheguru for their - admittedly - difficult circumstances, as I've also heard of many Sikhs with disabled children who shun the Gurudwara as they feel God has let them down.

But I don't judge these folk. Only they must know the daily struggles they face in raising children with disabilities. One can only hope those who have lost heart, find their way to His feet once again.

[Guest autismmum]

I welcome the above support. My thoughts are with all those families who require our kindness and acceptance. I think the frustrating thing for me is that I beleive that you (my sons' brothers and sisters) would like to do more for the most vulnerable in our community. We have to make some postive changes, and provide better support especially for the elderly as well. Maybe a volunteer pool of helpers at each Gurdwara (no politics or discrimination)offering invidualised support for them. Life as parent of a severely disabled child is difficult and I know I learn so much from my son, with Waheguru's blessing we all can some changes.

[Paneer Monster]

We feel alot more support and acceptance is required and sevadars need to more true to the principles of Sikhi when we visit the Gurdwara. My beautiful, brave, courageous son has severe learning difficulties and autism. He is 7 years old and is non-verbal and with Waheguru's kirpa we have blessed with remarkable progress in his development. I have been told to 'develope a thick skin' and be more in my Sikhi when I ask for support - these alongside with the disgusting looks we get are very unhelpful. My son has expressed an interest in his Sikhi (enjoys watching images of our beloved Guru Ji's and listens to short bursts of Japji Sahib on his Ipad). I know my son's behaviour can become challenging and look odd but I passionately beleive he is also entitled to his right to spiritual development. The more he visits the Gurdwara these behaviours will decrease.

I would like to hear from other parents with disabled children/adults - you have my best wishes.

I welcome the above support. My thoughts are with all those families who require our kindness and acceptance. I think the frustrating thing for me is that I beleive that you (my sons' brothers and sisters) would like to do more for the most vulnerable in our community. We have to make some postive changes, and provide better support especially for the elderly as well. Maybe a volunteer pool of helpers at each Gurdwara (no politics or discrimination)offering invidualised support for them. Life as parent of a severely disabled child is difficult and I know I learn so much from my son, with Waheguru's blessing we all can some changes.

Vaheguru ji ka Khalsa Vaheguru ji ki Fateh ji

Welcome to sikhsangat.

I must start by saying I really do admire your attitude and perspective on the issues you have raised. I would also like to emphasise a point you have made to the sangat: it is indeed a huge struggle to care for autistic youngsters, let alone raise them. In addition to the extremely diverse autistic spectrum there are several other significant factors that impact an autistic childs behaviour and progression. As you have stated, it has also been a huge learning process for you.

Unfortunately, it is not uncommon to find that parents can not cope with their autistic children, and pass the responsibility to someone else. I have done a lot of work with young autistic learners, and I must say I have an immense amount of respect for parents such as yourself who are not only interested in exploring possibilities for the development of your child (and other children) but also would like to spread awareness about the issue.

I find that there is very little support (other then specialist education institutions) that cater or even slightly accommodate to the needs of young autistic people.

Where I live there are not any Sikh children let alone disabled / autistic children. Even so, your initial post has stimulated a lot of thought in my mind. I am fairly sure that there are Christian based charities to support families who care for autistic people. I would imagine that given the amount of muslim students with autism and disabilities there are Islamic organisations that help them, although these Islamic organisations may limit their help to only their own.

There are two points I gathered from your posts; you believe the sangat would like to do more for the vulnerable in our community, and secondly that you would like to nurture your childs interest in Sikhi.

I think if we are going to provide facilities for the vulnerable we would need to be more specific of what we want to do, and what vulnerable community we wish to target. Here are some ideas that have come to my mind:

For the elderly – we flag this issue up in our local Gurdwaras that their may be elderly / disabled sangat that perhaps can not make it to the Gurdwara. Sangat who have cars can pick up the less able sangat at a set time and perhaps have a weekly elderly kirtan darbar session. Or even an elderly recreation morning every Tuesday for example.

For young autistic Sikh children – where I live Sikh autistic / disabled students are very few and far apart. We could have a Sikhi activity afternoon session once a week or once every two weeks at a local gurdwara. Assuming the students would be few and far apart, a mini bus can pick up the students and take them to a Gurdwara where the activities would take place.

For awareness and learning resources – we could get in touch with educational professionals in universities and colleges, and work with them to base units of work for further and higher education around creating specialised software or flash programs to meet the specific needs of autistic students. For example creating a Sikhi educational game to meet the needs of a specific autistic student. Even better if there are any sangat that are able to create software and interactive flash games, we can work with them to create sikhi material for autistic users.

Just my 2 cents… apologies for writing an essay.

Vaheguru Ji Ka Khalsa Vaheguru Ji Ki fateh Ji

[Singh559]

The Gurudwara I go to has a fair number of children with Down's Syndrome who attend on a weekly basis. Obviously they come with their parents and I think it's wonderful because it's very easy for our people to keep these kids "hidden away" from the world. It's a positive reflection on the parent's faith that they aren't blaming Waheguru for their - admittedly - difficult circumstances, as I've also heard of many Sikhs with disabled children who shun the Gurudwara as they feel God has let them down.

But I don't judge these folk. Only they must know the daily struggles they face in raising children with disabilities. One can only hope those who have lost heart, find their way to His feet once again.

[Guest autismmum]

Waheguru ji ka Khalsa Waheguru ji ke Feteh

Many thanks for your comments/advice it is appreciated. I personally have never met a parent/family who 'blame Waheguru for their difficult circumstances'. In anycase we need to be more proactive in our message of support to them. I have enormous family support which has helped however some families that I have met are not so lucky and feel very isolated. Autism is complex and it effects more boys than girls. I am a single parent (which makes it much harder in our community) and live in Birmingham. My son was born three months prematurely and I beleive his strong will and determination in everyday life is inspirational - these individuals are the bravest of the brave.

We won an educational tribunal to send him to a very good independant special school (first child to do so at the age of four and a half) but found it lacks support for his cultural and spiritual needs and I agree that Sikhism is not fully understood by the wider educational specialist. Eventually, we are now looking at an after school placement at Nishkam Primary School with one-to-one support. The School will 'allow' my son to be there with his support - to be funded by the local authority. I am interested to hear from anyone who would consider supporting my son whilst he is at Nishkam School. I am not only thinking of my child but by doing this, the hope is to encourage more families and supporters to engage in what the specific needs are and to actually help. My son would love the opportunity to access sports facilites within the comfort and support of the Sikh community does anybody know of Gurdwara's we could try in Birmingham? There are many changes happening in respect the The Green Paper for SEN and our educationalist need to be aware of these. I would say to parents in my sitiuation to provide consultation in this process and use the full weight of The Autism Act 2009 when faced with discrimination (even if its in our own Gurdwara's).

http://www.un.org/apps/news/story.asp?NewsID=38030&Cr=autism&Cr1=

[VanHelsingh]

I personally have never met a parent/family who 'blame Waheguru for their difficult circumstances'.

Sadly, I have heard a few comments from parents and it's pretty heartbreaking. But like I said, I have no idea what it feels like to be in their shoes so I don't judge those who aren't as strong as someone like yourself, autismmum.

[Guest autismmum]

Sadly, I have heard a few comments from parents and it's pretty heartbreaking. But like I said, I have no idea what it feels like to be in their shoes so I don't judge those who aren't as strong as someone like yourself, autismmum.

Waheguru ki ka Khalsa Waheguru ji ke Fateh

I am not as strong as you think, I am physically and emotionally exhausted. We must all remain non-judgmental.

[Guest Gurpreet Kaur]

Vaheguru Ji Ka Khalsa Vaheguru Ji Ki Fateh

I am a trainee clinical psychologist currently carrying out some research on the UK Sikh population and their attitudes towards people experiencing difficulties (intellectual disabilities and mental health problems).

I feel that everyone who has posted here would be able to make a valuable contribution to the study and humbly request that you take 10-15 minutes of your time to complete an online survey which is only open for another week or so. The more views that are obtained, the more representative the results will be which will in turn lead to an increased likelihood that the findings will be heard by mental health professionals across the UK and worldwide. There really is nothing known about Sikhs and how theyview, deal with or understand these difficulties, so your views would be greatly appreciated.

If you identify yourself as Sikh, are over 18 and live in the UK, then please access the survey at: -

UK Sikh survey

I you have trouble, then please copy and paste this url: - https://opinio.ucl.ac.uk/s?s=11049 OR, e-mail me, the researcher at g.k@# for a hard copy.

Vaheguru Ji Ka Khalsa Vaheguru Ji Ki Fateh