Where Are Our Disabled Sikh Children?

[Guest autismmum]

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

Waheguru Ji Ka Kalsa Waheguru Ji Ke Fateh

Thank-you Gurpreet Kaur alot of seva/work is required in this area. We have ofcourse completed the survey and will encourage family members to do so as well. Both my daughters are studying psychology and we rely on ABA Tutors from Birmingham Uni. With Waheguru Ji's kirpa I hope you have a good response from this forum

Waheguru Ji Ka Kalsa Waheguru Ji Ke Fateh

[Guest Preet Kaur]

I am a single mom to a son who was born 3 months early at 1.1lb due to my kidneys being failed in my 4th month of pregnancy. My son has gone through alot of challenges but come on top, I believe due to Waheguru's kirpa only. God has truly shown me miracles through prayers. At age 8, my son was diagnosed with ADHD and Epilepsy and now at age 10, last month diagnosed with autism with tics and intellectual delays of age 3-4 with profound speech delays. I believe in prayer and hymns help tremendously. He was introduced to the Kirtan and Sukhmani Sahib from get go, he has alot of interest and it calms him, especially at night when falling asleep. I wanted him at Khalsa School here but did not find that support, nor in a christian based school. It is sad to see that our Sikhs in this day and age, are not more aware of our children with disabilities, but no one is at fault. There is more awareness needed. It would be good to see support groups, recreation friendship groups for our children and parents alike. I totally feel for you and agree with you. God bless you upon your path with your child. Waheguru ji

[Guest autismmum]

I am a single mom to a son who was born 3 months early at 1.1lb due to my kidneys being failed in my 4th month of pregnancy. My son has gone through alot of challenges but come on top, I believe due to Waheguru's kirpa only. God has truly shown me miracles through prayers. At age 8, my son was diagnosed with ADHD and Epilepsy and now at age 10, last month diagnosed with autism with tics and intellectual delays of age 3-4 with profound speech delays. I believe in prayer and hymns help tremendously. He was introduced to the Kirtan and Sukhmani Sahib from get go, he has alot of interest and it calms him, especially at night when falling asleep. I wanted him at Khalsa School here but did not find that support, nor in a christian based school. It is sad to see that our Sikhs in this day and age, are not more aware of our children with disabilities, but no one is at fault. There is more awareness needed. It would be good to see support groups, recreation friendship groups for our children and parents alike. I totally feel for you and agree with you. God bless you upon your path with your child. Waheguru ji

Waheguru Ji Ka Khalsa Waheguru Ji Ke Fateh

Penji Preet Kaur heartfelt thanks for getting in touch - you are amazing!! I would love to hear from you again so that we could share our experiences. How are you? Please take care of yourself too - I know there are never ending battles to fight (better services for health, education and social services departments) and then trying to meet your precious son's individual needs.

I agree with you about the lack of awareness but don't you feel that sometimes because the needs of our children are so obvious that basic humanity/spirituality is all that is required? I can understand why you would be interested in your beautiful son attending Khalsa School and feel that it would be ideal for all concerned. We really need Special Needs Units in these Sikh Schools and I trust with Waheguru Ji's kirpa it will happen..

Please take care of yourselves.

Waheguru Ji Ka Khalsa Waheguru Ji Ke Fateh.

[simran345]

WJKK WJKF

It is sad to see that our Sikhs in this day and age, are not more aware of our children with disabilities, but no one is at fault.

I agree there is not enough awareness, not just with children, also with adults and youth. Mind you saying this, I'm not sure if it is the same in other religions, as have no connection with anybody from another religion. So, wondering whether its just asians that are behind in disability awareness or other religious places are too.

I agree with you about the lack of awareness but don't you feel that sometimes because the needs of our children are so obvious that basic humanity/spirituality is all that is required?

Yes soooooo true. instead of being ignored or isolated, its lovely to be approached with love and care, the children are god's creation and they should be able to also join in with as much as is possible.

Somebody with a disability or a child's parent with a disability doesnt expect to be treated like royalty above everybody else or want gold medals, all they need is understanding, and to be able to live and join in the community, as its hard enough coping on a daily basis.

Some people will argue that it is karm, but anything can happen to anybody, its all in waheguru's hukam.

I dont like to say this, but many a time I think to myself, there is so much emphasis on helping others, that here abroad, there is not the support for those who need it here. But then again we are lucky we have, councils, who have services available to the diversity of people with disabilities or other health problems.

It would be gr8 to see the facilities Gurpreet Kaur bhenji and Preet Kaur bhenji have mentioned, i fully support your ideas and may waheguruji make this happen.

[Guest no eyes]

"because it's very easy for our people to keep these kids "hidden away" from the world. "

Its weird because I was speaking with a woman the other day with a disabled child- she was saying that alot of the indian community are ashamed of their disabled children and give them away to be taken care of or leave them at home during weddings etc.

It's best to remeber how much love our gurus showed to disabled people like people with leprosy etc. Outer image does not matter, it is only truth that matters.

In gurbani Guru ji says after travelling the world they have taken out their eyes, and then truth was seen.

We all have a heart in which god resides, and we are all One, a part of god.

[Guest Hardip cheema]

I am a mother of a beautiful daughter who is about to be 3 years old. She has a pending diagnosis of autism. It has been a dreadful year coming to terms with this and belonging to culture where such issues are brushed under the carpet. I am really desperate to talk to someone else in my position. this is not only to share ideas and experiences but also to widen the knowledge of our fellow Sikhs who often portray and stereotype attitude. Please call me on 07507 833125

[Guest Guest]

WJKK WJKF

Just left a message - please get in touch. Today is Autism World Awareness Day you are not on your own.

[Only five]

No doubt there are Sikhs who are ready and willing to donate to this cause, but before such SIkhs donate, they need a certainity that the money will be put to use to help children that are in need.

For this there needs to be a campaign to make Sikhs aware about the problem. Many of these big donators see one chidren a year who needs help at the Gurdwara or hear about very few and wide spread cases. So they are unaware that it is a big issue or believe making a single faculty at a Gurdwara will not help the wider community. There thinking is that the family is getting help from the government in the form of financially and providing facilities.

Over the years i have heard of cases, but they are from all parts of Canada. So first thing the local sangat need to do is make its case that there is more than one child with special needs in an area (for donations to start coming in to build what is needed). For this you will need the Gurdwaras help by making anouncements when there is a lot of sangat at the Gurdwara. There already needs to be an association set up to take on the work for organizing, what will be done to help these children and where they will be facilitated. Register this association with the government and then get university volunteers to come in and help out with the children that are interested in this kind of profession. This way the university students will get credits for their time and the special needs children are getting the support they need. This can't be a small project as many risk are involved for those that facilitate special need children and we will be putting these special need students at risk. We shouldn't blame Gurdwaras because they don't have the faculties and staff (professions in this field) to provide the services that are needed.

Once organizations are set up and they have a plan. Then plaster the walls at the Gurdwaras to promote these organizations, ask the committee to let the organization speak at the Gurdwara about how the program will work, and build networks to increase the awareness of these organizations (people with marketing back rounds can help very effectively here) . Each location will need a coordinator to run the association who will be paid full time, which means a steady donation from the local sangat will be needed.

There is a lot of politics involved in running Gurdwaras, so you will face many road blocks. It all depends on the Gurdwara committee. Many Gurdwara committees already have enough to deal with and taking on a bigger load will cause many political problems for the current committee. So members from the sangat have to step forward and take on the responsibility of running all the operations, which includes making sure enough donations are coming in to keep the programs going. Also since we are born with Sikh blood, then this means no person of any religious back round can be denied these services, just like no one is denied langar at the Gurdwara. We as the SIkh community will not have a problem with this, but Gurdwara committees will because this means political problems for them and more needs to be donated to ensure the program keeps running.

Another option, which is at a smaller scale that might be effecient for the communities with a smaller population of children with special needs, will be to set up the weekends for special needs children and parents to attend Darbar Sahib and help each other out. Make a small organization, where funds can be put toward and the wider sangat can help with funding this organization. Ask the Gurdwara committee if the organization can use a room in the Gurdwara to facilitate some of the things for the special need children. So when ever the parents bring their children at the Gurdwara, they have the service there. Again you will need to make an awareness at a mass scale to get the sangats backing. Once you have the sangats backing, then the Gurdwara committees will not be able to deny your request. Sadly we live in a world where some Gurdwaras are run by arrogant people. I have met the arrogant Gurdwara committees, which have the money to run the faculties and met those that are open to including more services at the Gurdwara, but they are facing financial troubles. This means we need to think twice before donating to any Gurdwara or donating to the local Gurdwara because its the local Gurdwara. Forget about all these political ties with a Gurdwara.....they have tables and chairs so i donate here, they sit on the floor so i donate there....the list goes on. We as a sangat hold a lot of power if we stand united and stand up to the masands of today.

There are many educated Sikhs in these fields today, we have the faculties to provide these services. All we need is to start organization that will run the services and these organizations need financial backings. Next time we decide to donate money to outside organization, think twice because that money can be used to build organizations where Sikh children and other non-Sikh children can be helped.

[Guest Tanvir Kaur]

waheguru ji ka khalsa waheguru ji ki fateh

i agree with you, my brother is severely autistic, on the 'worser' end of the spectrum which means he is non-verbal and cannot realistically live by himself ever. there is not much support out there at all, we literally have to fight with the social services to provide even the basic of needs for him. despite all this he is the most beautiful and handsome boy you could ever meet, when he laughs its as if god is laughing with me, his eyes pierce through my soul and his sadness makes me feel like death. their emotions are true and real, and god truly resides in them for they despite being a part of this world, never truly are. this makes his extremely special in my eyes, he lives as a human but has minimum level of emotional understanding, no maya and worldliness pollutes his mind. when we were young apparently a saint visited our home and when he met my brother, he simply smiled and said 'tu sade warga kith aagia?' roughly translates, you who is like me, where have you come? i love him with all my heart but do wish he was able to visit the gurdwara, and really wished the gurdwara could talk about such issues rather then shying away from them, it feels like we live in the repressive victorican era lol..

thats my two cents

fateh ji, and lovely discussion!

[Guest Singh]

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.

Glad to know that our little veer (your son) is trying his best, but the changeless he is going through are really difficult, Guru sahib has given us faith and courage to fight against all difficulties. I was 17 when my mother passed, that time my sister was 12 years old and she was born with Malingomileses, Its a rare disease with a ball of nerves on the spinal cord, she was six months when she got operated, but the operation was a disaster, her balder malfunctioned and she lost control of balder and the nerve damage caused further weakening of legs and other parts of body as doctors forgot to connect the nerves correctly and many doctors said that she might end up with a very Big head or might not live at all, but with Guru Sahib's grace now she is a Pharmacist and treats other people, It was really difficult to understand her while she was growing and required intense care as was a motherless child. Only one thing kept us going and that was faith, Now when I look back at the time we spent, my father and I thought that she might not be able to live like this even for 5 more years but she did and she is independent now and helping others. I am sure our young veer has plenty to learn and without anybodies help he will be able to stand one day and will speak in his own way. God Bless.

"Tu Kahey Dolay Praniya tud rakheyga sirjanhar. "