Where Are Our Disabled Sikh Children?

[Guest autismmum]

WJKK WJKF

Really scared about doing this but I thought I would answer my own question!! Sadly had to cut his kes - we have hope for the future.

WJKK WJKK

[Guest My 7 year old son]

Vaheguru Ji Ka Khalsa Vaheguru Ji Ki Fateh,

This is my story.

The year was 2007. My son was nearly two and his vocabulary had regressed, he was not communicating properly and would generally run up or down a lot or build toys in lines. It was my wife who first noticed this odd behaviour, prior to this he was growing up just like normal boy, he was initially speaking many words, including Punjabi. But for some reason he started to regress. My wife mentioned this to the health visitor and she came round to see my son. She advised us to take him to the local children centre where they can observe his behaviour, etc for a couple of weeks. It was the the third week when we were called in to discuss his behaviour. What we were about to hear would completely change my life for ever. I remember that day clearly, because it was like a bullet to the heart. There were all sorts of people in the room, Doctors, speech therapists, about 7 professionals in total. I thought this was odd. I wasn't really taking anything in until I heard the words "mildly autistic". I said 'what?'. I couldn't believe it. I wasn't really sure what Autism mean't but I knew it was pretty awful, I remembered a programme in the 80s called Q.E.D which featured a gifted artistic small boy who was autistic. That's all I knew about the subject. The more they explained the more I felt physically sick. My world was literally crashing down around me. My wife didn't really have a clue what what was happening until I explained everything to her on the way home. We were in shock!

I didn't know what to do. Why us, why my son. What caused this? MMR, etc. My mind went round in circles. I couldn't do anything that day, or a few days.

To put this story in context, all my family are Gursikh Amritdhari's. We also follow a strong lineage of Brahm Giani's from India. Our faith was properly tested here. Firstly I want to say how thankful that we are born into a Sikh family. We are all lucky to be Sikh. I know in this context it sounds unlucky, but seriously you don't know how lucky you are. To be on this path and be close to waheguru. Anyways.... you can imagine the amount of Ardas' we were doing. Day and night, why him, pleading with waheguru. We know it was baba ji's hukum for him to be this way but.. we just couldn't live with it. Things change and they can be changed! No matter how bad everything looks. With true faith and waheguru's kirpa anything can be achieved if he (waheguru) allows it.

After carrying such a burden for a few weeks our emotional state was in threads. We believe in the SGGS and my wife made heartfelt ardas' for help. We also approached our Sant for guidance. We knew our Brahm Giani was a channel to Waheguru himself. They are super enlightened beings, kind and helpful to others. The sangat always comes to them to seek guidance. They were our only hope. Like I said, we are all lucky to be born into Sikhi, and my family are personally fortunate to be under the wing/guidance of such Sants. If I was born as a gora I may not have had the knowledge of God, and instead be going to parties, drinking, cutting my hair and be oblivious to nitnem. (having said that, our own apne behave exactly like that, but that's another topic for another day)

Anyway, my son was initially at a mainstream preschool, but after his diagnosis we were advised to have him placed within a Special Needs School. Again, our faith was tested. I remember visiting the school for the first time, my heart sank again. I never thought for one day any child of mine would go to school like this. We take things for granted, thinking we all grow up normal, go to school/uni, get a job, get married and have kids. But after 'seeking guidance' it was the right thing to do. My son was at the school for 3 years. When he first joined he could not speak accept for 3 words. He did not interact with other children and hardly had any imagination. But with Waheguru's kirpa he transformed. His rate of improvement rocketed. Speech, interaction, motor skills, imagination was unbelievable. This also reflected in the home too. Then the good news came. The staff began to advise us that they recommend that he should go back into mainstream school. This was unbelievable news. You can imagine we were all chuffed. They said this is quite amazing and rare for a child that early on to make such progress. (he was 5 at the time)

He finally joined Year 2 of primary school in 2011. We were so happy. He is in year 3 now and continuing his great learning curve just as he was a couple of years ago. At the start of Year 3 his level in English and Maths was a 1B but his improvement in over the past few months has seen him jump to 2c. He is now level with some of his peers. He loves art, drawing, making things. His imagination is awesome. We can have conversations, play, everything I thought he would never do. I thought he would have no emotion and never call me dad or love me, but he is the opposite. He has learnt to swim, he's into football (I take him to see PL matches), he get's invited to birthdays, he's just like your everyday boy, currently into Kick Buttowski and Angry Birds). He's even now learning Jiu-jit su. He dresses himself, cleans his teeth and himself after the toilet. Simple things we thought he would never do himself. The next challenge is to see if we can teach him to tie his own patka However, he's still slightly behind in some areas like communication but I would say he's 70% in that. But this is all down to kirpa and remembering Waheguru.

My wife reads to him the Sukhmani Sahib paath every day. She has been doing this since 2007. Remember this is quite a powerful paath. it gave us hope and strength. It supported us as we grew and it has given my son fantastic strength. Please, please stay on track with your nitnem. If you can spend 5 minutes of the day with your child, reading paath to them. My son is now doing the mool mantar nightly but he sometimes gets lazy and just says' satnam waheguru' lol. But I am telling you it all helps in the long run.

We also go to the Gurdwara to do sewa. My son who is 7 now, also joins in. He loves it! He dries the plates, cups and helps with straightening the sheets Early on when he was first diagnosed he would be very hyper and run around, up and down. Who wouldn't the langar hall is massive and just looks like a playground with all that space. All kids do it, and still do. But he has calmed down now. Seva keeps him busy. When he is not busy I will show him the Guru's paintings and explain who they are. He's even kind of become a sewa policeman telling other kids not to run and ruin the sheets on the floor lol. He interacts well there, with the elders and the other children. Going to the gurdwara and doing his nitnem has given him an interest in Sikhi. He likes to draw the Gurus and he wants to know more. He loves drawing the Golden Temple and writing in Punjabi, the words don't make sense but he can write them beautifully so much that he said he wants to join the Punjabi class.

I know what people mean, at first we used to hate taking him anywhere, because people would just say he's naughty because he wouldn't sit still. shopping was a nightmare in the early days. It was hard work, to look out for him so we would hardly go to weddings or parties (complete bummer) but now it is completely the opposite. I can go shopping with him and not really worry about him. We go to parties, he loves dancing and being the main man.

But all of this is down Maharaji's kirpa. however to gain baba ji's kirpa we have to do our bit. Seriously nitnem, naam jaapna. Remembering God, it is the only way. Seek guidance in nitnem. If you can try and read the Sukhmani Sahib paath to your children. My son wouldn't have got this far and at that rate if it wasn't for waheguru. I know it can be very tough at times, but you will all get through it. There is light at the tunnel. We are proof of that. Please don't give up hope! x

For the record, we have hardly told anybody about his condition. Only a very few of close family members know. We did this because we feel, and he will be 100%. We have complete faith in waheguru.

WJKK WJKF

[5ukhjinder5ingh]

Vaheguru Ji Ka Khalsa Vaheguru Ji Ki Fateh,

This is my story.

The year was 2007. My son was nearly two and his vocabulary had regressed, he was not communicating properly and would generally run up or down a lot or build toys in lines. It was my wife who first noticed this odd behaviour, prior to this he was growing up just like normal boy, he was initially speaking many words, including Punjabi. But for some reason he started to regress. My wife mentioned this to the health visitor and she came round to see my son. She advised us to take him to the local children centre where they can observe his behaviour, etc for a couple of weeks. It was the the third week when we were called in to discuss his behaviour. What we were about to hear would completely change my life for ever. I remember that day clearly, because it was like a bullet to the heart. There were all sorts of people in the room, Doctors, speech therapists, about 7 professionals in total. I thought this was odd. I wasn't really taking anything in until I heard the words "mildly autistic". I said 'what?'. I couldn't believe it. I wasn't really sure what Autism mean't but I knew it was pretty awful, I remembered a programme in the 80s called Q.E.D which featured a gifted artistic small boy who was autistic. That's all I knew about the subject. The more they explained the more I felt physically sick. My world was literally crashing down around me. My wife didn't really have a clue what what was happening until I explained everything to her on the way home. We were in shock!

I didn't know what to do. Why us, why my son. What caused this? MMR, etc. My mind went round in circles. I couldn't do anything that day, or a few days.

To put this story in context, all my family are Gursikh Amritdhari's. We also follow a strong lineage of Brahm Giani's from India. Our faith was properly tested here. Firstly I want to say how thankful that we are born into a Sikh family. We are all lucky to be Sikh. I know in this context it sounds unlucky, but seriously you don't know how lucky you are. To be on this path and be close to waheguru. Anyways.... you can imagine the amount of Ardas' we were doing. Day and night, why him, pleading with waheguru. We know it was baba ji's hukum for him to be this way but.. we just couldn't live with it. Things change and they can be changed! No matter how bad everything looks. With true faith and waheguru's kirpa anything can be achieved if he (waheguru) allows it.

After carrying such a burden for a few weeks our emotional state was in threads. We believe in the SGGS and my wife made heartfelt ardas' for help. We also approached our Sant for guidance. We knew our Brahm Giani was a channel to Waheguru himself. They are super enlightened beings, kind and helpful to others. The sangat always comes to them to seek guidance. They were our only hope. Like I said, we are all lucky to be born into Sikhi, and my family are personally fortunate to be under the wing/guidance of such Sants. If I was born as a gora I may not have had the knowledge of God, and instead be going to parties, drinking, cutting my hair and be oblivious to nitnem. (having said that, our own apne behave exactly like that, but that's another topic for another day)

Anyway, my son was initially at a mainstream preschool, but after his diagnosis we were advised to have him placed within a Special Needs School. Again, our faith was tested. I remember visiting the school for the first time, my heart sank again. I never thought for one day any child of mine would go to school like this. We take things for granted, thinking we all grow up normal, go to school/uni, get a job, get married and have kids. But after 'seeking guidance' it was the right thing to do. My son was at the school for 3 years. When he first joined he could not speak accept for 3 words. He did not interact with other children and hardly had any imagination. But with Waheguru's kirpa he transformed. His rate of improvement rocketed. Speech, interaction, motor skills, imagination was unbelievable. This also reflected in the home too. Then the good news came. The staff began to advise us that they recommend that he should go back into mainstream school. This was unbelievable news. You can imagine we were all chuffed. They said this is quite amazing and rare for a child that early on to make such progress. (he was 5 at the time)

He finally joined Year 2 of primary school in 2011. We were so happy. He is in year 3 now and continuing his great learning curve just as he was a couple of years ago. At the start of Year 3 his level in English and Maths was a 1B but his improvement in over the past few months has seen him jump to 2c. He is now level with some of his peers. He loves art, drawing, making things. His imagination is awesome. We can have conversations, play, everything I thought he would never do. I thought he would have no emotion and never call me dad or love me, but he is the opposite. He has learnt to swim, he's into football (I take him to see PL matches), he get's invited to birthdays, he's just like your everyday boy, currently into Kick Buttowski and Angry Birds). He's even now learning Jiu-jit su. He dresses himself, cleans his teeth and himself after the toilet. Simple things we thought he would never do himself. The next challenge is to see if we can teach him to tie his own patka However, he's still slightly behind in some areas like communication but I would say he's 70% in that. But this is all down to kirpa and remembering Waheguru.

My wife reads to him the Sukhmani Sahib paath every day. She has been doing this since 2007. Remember this is quite a powerful paath. it gave us hope and strength. It supported us as we grew and it has given my son fantastic strength. Please, please stay on track with your nitnem. If you can spend 5 minutes of the day with your child, reading paath to them. My son is now doing the mool mantar nightly but he sometimes gets lazy and just says' satnam waheguru' lol. But I am telling you it all helps in the long run.

We also go to the Gurdwara to do sewa. My son who is 7 now, also joins in. He loves it! He dries the plates, cups and helps with straightening the sheets Early on when he was first diagnosed he would be very hyper and run around, up and down. Who wouldn't the langar hall is massive and just looks like a playground with all that space. All kids do it, and still do. But he has calmed down now. Seva keeps him busy. When he is not busy I will show him the Guru's paintings and explain who they are. He's even kind of become a sewa policeman telling other kids not to run and ruin the sheets on the floor lol. He interacts well there, with the elders and the other children. Going to the gurdwara and doing his nitnem has given him an interest in Sikhi. He likes to draw the Gurus and he wants to know more. He loves drawing the Golden Temple and writing in Punjabi, the words don't make sense but he can write them beautifully so much that he said he wants to join the Punjabi class.

I know what people mean, at first we used to hate taking him anywhere, because people would just say he's naughty because he wouldn't sit still. shopping was a nightmare in the early days. It was hard work, to look out for him so we would hardly go to weddings or parties (complete bummer) but now it is completely the opposite. I can go shopping with him and not really worry about him. We go to parties, he loves dancing and being the main man.

But all of this is down Maharaji's kirpa. however to gain baba ji's kirpa we have to do our bit. Seriously nitnem, naam jaapna. Remembering God, it is the only way. Seek guidance in nitnem. If you can try and read the Sukhmani Sahib paath to your children. My son wouldn't have got this far and at that rate if it wasn't for waheguru. I know it can be very tough at times, but you will all get through it. There is light at the tunnel. We are proof of that. Please don't give up hope! x

WJKK WJKF

(For the record, we have hardly told anybody about his condition. Only a very few of close family members know. We did this because we feel, and he will be 100%. We have complete faith in waheguru.)

[Raaj.Karega.Khalsa]

^^^ Thanks a lot for sharing, bhaji. Hope your little one recovers 100%.

[5ukhjinder5ingh]

No worries. Anytime. I hope our story inspires other readers. We've had an incredible journey so far, a lot of lows to begin with but we have got through that with Maharji's kirpa. I'm sure there are still a few more hurdles to cross but he'll make it. I know Please please do not forget Waheguru. It is so easy to fall into the trap of putting off nitnem and watching TV, going out, drinking, etc and never remembering God. We are so lucky we are born into human beings. We must not waste our time here!

WKK WKF

^^^ Thanks a lot for sharing, bhaji. Hope your little one recovers 100%.

No worries. Anytime. I hope our story inspires other readers. We've had an incredible journey so far, a lot of lows to begin with but we have got through that with Maharji's kirpa. I'm sure there are still a few more hurdles to cross but he'll make it. I know Please please do not forget Waheguru. It is so easy to fall into the trap of putting off nitnem and watching TV, going out, drinking, etc and never remembering God. We are so lucky we are born into human beings. We must not waste our time here!

[Guest Guest]

"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.

True Said.......

Everyone is Special....................People with Treacher Collins Syndrome are hated as well by ignorant people and some might not let them enter Gurdwara thinking them as Leper......We should know that Guru saheb always stood for there Justice of these people....Guru Nanak once met Leper whom people always hated and guru nanak cured his Leprosy

I believe Guru Nanak is in hearts Of these people.....What Guru nanak dev ji has to do with Higher Ones and Riches??

In USA People with Treacher Collins Syndrome are hated a lot.....

No one sees the beauty of heart but everyone watches facial beauty....

And some people believe that only they have Copyright on God?They think Like others have no religious feelings in there Heart

[Guest -gupt-]

Fateh

While I understand the pain and devastation involved when living with a disabled child and appreciate the journey made by _my 7 seven year old child_ it needs to be acknowledged that even if progress is slow or not forthcoming it does not mean that the parents do not love and remain humble to SGGS.

The OP is right, people are too judgemental, assuming parents like us 'wish we never had the child' or don't do enough nitnem. We have unconditional love for our child and only WE know our journey. Our life on this earth is very fragile - we should not question or blame Waheguru Ji for our issues but remain humble as the dust on his feet and trust him.

It's heartbreaking to hear about the experience of the sangat with Treacher Collins Syndrome - may Waheguru forgive us.

Bhul chuk mauf

[Guest G CHEEMA]

I AM A MOTHER OF 2 YES 2 AUTISTIC CHILDREN. ONE MALE AND THE OTHER FEMALE. LIFE IS HELL DUE TO MY HUSBAND. IN ASIAN CULTURE PEOPLE BALME THE WOMEN FOR A DISABLED CHILD. GOD CHOOSES NOT US. PLEASE HELP ME IN ANYWAY YOU CAN

[Guest G CHEEMA]

Hi

I am a mother of 2 autistic children. my boy and girl both have it. I pray endlessly at the Gurdwara but nothing is helping. trying not to sound like a child. my daughter is still in nappies at the age of 5. my son 3 is virtually non verbal. life is hell. tried to take my own life due to these circumstances. recently stopped putting on path in the house not deliberately. life just gets busy. your blog has inspired me. thanks

[simran345]

If anybody knows any Sikh organisation that can help penji with her problems or any Sikh carers group please put details on here. Sorry I don't know them. But life with any disabilities and coping for ur loved ones is hard. Don't give up, I am sure there is help out there that would make life bit easier for u. Ur husband should not blame u. Have u tried Sikh helpline.

http://www.sikhhelpline.com