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Old 01-06-2013, 12:35 PM   #1
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Baha'i Life - Special Needs Children, Autism

I am the father of 3 children. My eldest son has Autism.

Trying to integrate my son into Baha'i life has been so challenging and I haven't gotten very far.

He has a really hard time sitting down and remaining quiet during feasts and devotionals. My wife even took him to children's class, he seemed to irritate the instructor more than actually learning anything.

My wife is currently taking Ruhi book 3, and asked what is done to help integrate children with special needs. The answer was, it depends on the instructor but there aren't any specifics in the curriculum. When we lived in New York, I was even asked to take my son out of the room during a devotional because he was being too vocal. People see we need help and offer some sympathies but it pretty much ends there. I appreciate that people can be sympathetic and nice but I don't feel any support, and I don't feel that there is any structure in place to accommodate children with special needs.
 
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Old 01-06-2013, 07:57 PM   #2
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I think you may be correct in stating there is no "...structure in place to accommodate children with special needs."

It would be I think appropriate for you to perhaps take this issue to your Assembly or maybe the Baha'i Schools Committee in your area for consultation.

It may be a matter for educating people about what the needs are and how they can be addressed.

My experience has suggested there are many families who have children with these special needs .. Each of them are unique in their own way of course.

Years ago my wife and I sponsored some children at the Baha'i school from a family and one of the children named "Norman" comes to mind.. Norman couldn't sit still and needed extra supervision to eat his food.. He also required attention at the swimming pool during recreation time as the other children didn't understand him .. I had to rescue him from drowning. Later he ran up a hill and threatened to throw rocks at people.. I ran up that hill and was able to diffuse the situation. So there ar eundoubtedly situations like this where children with special needs require more attention and follow up.

The good side is that there are often Baha'is with clinical experience around that can help you.
 
Old 01-08-2013, 12:15 AM   #3
Tony Bristow-Stagg
 
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Unfortunately I am also unaware of any support that is available. May be this could be the opportunity to start something up?

We had a very autistic child in our area back in the 1980's. I can remember at feasts that He gave His parents much anxiety. They had an external support group from the Faith as there was not and is still not any expertise in these small communities with this issue.

Unfortunately the pressure on that family was too much, I hope you are able to cope with it all.

I have seen a bit written on the subject where they are trying to effect change with diet (1 being the removal of food additives). From memory there has been some success in a few cases. But it is a time consuming task monitoring the food intake and adjusting. May be worth a look on the net?

Hopefully you can discuss this with your LSA and start the ball rolling!

Regards Tony
 
Old 01-10-2013, 08:04 PM   #4
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Cool

Greetings, dbrillet and everyone else!

I joined these forums after doing a search for Baha'i + Autism. I'm glad to see that I'm not the only one asking these questions.

Both of my children are Autistic to varying degrees. Believe me, I know exactly what you're talking about. I too have had the experience of people being sympathetic (& even offering unsolicited "advice" about "cures" & such - trust me, folks, we've heard it all before!) but not knowing exactly what to do with us. Yes, I realise people are well-meaning; yes, I realise it's up to me to educate others. But I get SO tired sometimes.... I have enough to deal with in my life without having to worry about explaining that we can't bring Johnny* to Feast today because he's had a series of violent meltdowns, and then what a 'meltdown' is, and how that really IS a big deal, etc etc. Y'know? In a perfect world, I could explain once & everyone would listen & understand.... everyone would read all the pamphlets I give out... alas, that isn't what happens. I really think people simply have no idea... no concept whatsoever... unless they themselves have a disability or a child with one.

Sorry, I didn't mean to go off into a giant rant in my very first post! I just wanted to say that I know how it is. I also worry about how to integrate my children into the community, how to teach them about Baha'i life and so forth. The best I've come up with is to do whatever works for our family & not worry about the rest. If that means we can only go to one Feast per year, if that means we have to leave early, then so be it. We all have our tests. Perhaps it is a test for the people in our community, to let go and be a bit more flexible.

Please feel free to PM me anytime. I wish I could offer more than just an ear, but there it is. :-)
 
Old 01-11-2013, 10:20 AM   #5
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Tori Lee,

Welcome!

I also worry about how to integrate my children into the community, how to teach them about Baha'i life and so forth

Don't underestimate the influence of the Faith on your children.. They'll pick it up according to their ability over time..I have a son who has borderline autism for years now and I work with him in reciting the prayer:

Create in me a pure heart, O my God, and renew a tranquil conscience within me, O my Hope! Through the spirit of power confirm Thou me in Thy Cause, O my Best-Beloved, and by the light of Thy glory reveal unto me Thy path, O Thou the Goal of my desire! Through the power of Thy transcendent might lift me up unto the heaven of Thy holiness, O Source of my being, 142 and by the breezes of Thine eternity gladden me, O Thou Who art my God! Let Thine everlasting melodies breathe tranquillity on me, O my Companion, and let the riches of Thine ancient countenance deliver me from all except Thee, O my Master, and let the tidings of the revelation of Thine incorruptible Essence bring me joy, O Thou Who art the most manifest of the manifest and the most hidden of the hidden!

- Bahá'u'lláh

(Compilations, Baha'i Prayers, p. 141)

There are others of course...



Don't be shy about letting your community know what you're dealing with..consult with the Assembly if need be.. Ask for their prayers and support!

There are so many issues your children will face as they mature they are too numerous to mention here.. but all you can do is your best.. I'm still involved with my son and he's over thirty years old.

Last year (2011) on the Feast of Sharaf he hosted his own Feast and still remembers it with pride. It was his first Feast that he hosted!

 
Old 01-12-2013, 05:13 PM   #6
Xue
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All children ultimately belong to God, would we ever tell God to take his children out of the room because they are bothering us, or in other words because we have created an atmosphere which excludes certain types of people? Just something to think about.

This issue in this thread does not necessarily need to be specific to so called special needs children but could be expanded to include all children. Our entire society rejects childhood and children's needs; the Bahai Faith on the other hand, is supposed to be setting a different standard of understanding, integration, and diversity, and general progressiveness in all things. Is the community setting such a standard towards a more child friendly religion? Personally I like the idea of adults being accepting of children and for the two age groups to exist side by side, without that, I find as an adult I start losing touch with children and their unique characters.

Part of the problem lies in silence about the real side of the issue which is intolerance. Dbrillet made a disturbing comment in his post about being asked to take his child out of a devotional because his child was being too vocal and that comment has gone unaddressed in this thread thus far. I think that asking for the removal of a child and by extension the parent during a time when we are contacting God is real issue deserving of discussion. What such an action is saying is you and your child are not allowed to contact God with us communally because we, the bigger group, have decided that you and your child's actions are not in accordance with our unstated rules, and our unstated authority. Why should this person have to go to the Assembly? What particular thing is it about this person and his or her child which calls for a need to see the Assembly? Why shouldn't everyone else who is "normal" have to go to the Assembly and ask for advice how to handle their intolerance?
 
Old 01-12-2013, 10:37 PM   #7
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Why should this person have to go to the Assembly? What particular thing is it about this person and his or her child which calls for a need to see the Assembly? Why shouldn't everyone else who is "normal" have to go to the Assembly and ask for advice how to handle their intolerance?

Consulting with an Assembly is not a judgemental thing... It's consulting about a problem for the family..

If you feel the need of advice and consultation he suggests you consult your Local Assembly; your fellow Bahá'ís will surely do all they can to counsel and help you, protect your interests and those of the Cause.

(16 November 1945)

(Compilations, The Compilation of Compilations vol II, p. 449)

There is also suggested the following:

A Bahá'í who has a problem may wish to make his own decision upon it after prayer and after weighing all the aspects of it in his own mind; he may prefer to seek the counsel of individual friends or of professional counselors such as his doctor or lawyer so that he can consider such advice when making his decision; or in a case where several people are involved, such as a family situation, he may want to gather together those who are affected so that they may arrive at a collective decision. There is also no objection whatever to a Bahá'í's asking a group of people to consult together on a problem facing him.

(19 March 1973 to the National Spiritual Assembly of Canada) 110

(Compilations, The Compilation of Compilations vol. I, p. 109)
 
Old 01-14-2013, 02:27 PM   #8
Xue
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Hello Artha,
I appreciate your reasoned and moderated response. I do not mean to imply that any given person should not see the Assembly of their region. Although who knows there may be cases when a person should not see an Assembly. I was once told by an Assembly member, in an Assembly meeting, not to go to the Assembly regarding a certain issue and that was his opinion as an Assembly member. This can probably get into a bit of a circular discussion about this considering I had to see the Assembly in order to hear such advice, but it does show how flexible these situations can be.

The issue, however, which I did not do well in pointing out is really quite different from the above, and I would like to know your opinion on this matter. Based on what we have to go on, it appears that Dbrillet was asked to leave a Ruhi meeting devotional because his child was making too much of a disturbance. Lets jump right into the heart of this matter and ask the question:

Is such an act prejudicial to certain types of children and their parents?

Investigating the issue of prejudice is of course central to Bahai Scripture and its concept of a healthy community and so I think it is relevant to raise this question especially when it can connect to a real life instance rather than merely as a point of generality. I am aware that the Bahai community is reticent to self-examination and that these are sensitive topics, and it is precisely for that reason that I believe they are so important.
 
Old 01-14-2013, 02:42 PM   #9
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Xue wrote:

Lets jump right into the heart of this matter and ask the question:

Is such an act prejudicial to certain types of children and their parents?

Investigating the issue of prejudice is of course central to Bahai Scripture and its concept of a healthy community and so I think it is relevant to raise this question especially when it can connect to a real life instance rather than merely as a point of generality. I am aware that the Bahai community is reticent to self-examination and that these are sensitive topics, and it is precisely for that reason that I believe they are so important.


My comment:

I don't think it's an act of prejudice to certain types of children...to ask that special provision can be made for children or specifically autistic children to have special attention.. or a program set aside for them designed for their level of capacity.

That's why there are specially designed levels in the Ruhi program for young children...youth and so on.

The value of consulting with one's Assembly for maybe an approach to the issue should be obvious in that the Assembly can make recommendations or suggestions that could help as the family is in their community and is known to them.

You write:

"I am aware that the Bahai community is reticent to self-examination..."

I'm unsure of that at least where I live the community seems open to self examination and consultation. If not maybe they should be.

Consider:

Consultation, frank and unfettered, is the bedrock of this unique Order

(Compilations, The Compilation of Compilations vol II, p. 104)

166.

The Great Being saith: The heaven of divine wisdom is illumined with the two luminaries of consultation and compassion. Take ye counsel together in all matters, inasmuch as consultation is the lamp of guidance which leadeth the way, and is the bestower of understanding.

("Tablets of Bahá'u'lláh Revealed after the Kitáb-i-Aqdas" [rev. ed.], (Haifa: Bahá'í World Centre, 1982), p. 168)

(Compilations, The Compilation of Compilations vol. I, p. 91)
 
Old 01-14-2013, 07:53 PM   #10
Xue
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Thank you for your reply I really appreciate your activity on this forum, however, I still find problems with the underlying assumptions of your response Artha. I don't mean this post as a direct question to you, however, but rather for the thread as whole so please do not feel as if I am expecting a response in this case. I also intend my comments not as advice for Dbrillet but nevertheless inspired by his thread and so I'm trying to leave the entire issue of whether anyone should go see the Assembly. Maybe I should start a new thread, but in a sense I do consider this intimately related.

I sense that you are responding to a larger consideration of what the community can accomplish with regard to this general issue. I however was trying to focus on a particularity which started this thread. I do not sense that Dbrillet was asked to go take part in a special provision but rather that he was simply asked to leave. In fact I think he posted this thread specifically because there was no special provision. Also very important is that he was asked to leave during the devotional, not during the portion where the so called intellectual component resides. Dbrillet said:

When we lived in New York, I was even asked to take my son out of the room during a devotional because he was being too vocal.

With regard to the general application of a special provision, I question both whether such an approach is in the spirit of the Bahai teachings, and how we can even assume those with autism have a lower level of capacity in the first place. (You did not specify a lower capacity in your post, however I can't imagine how you might have meant higher.) This relates to the phenomenon of ableism which although not yet as well known as the other types of prejudice, is an accepted form of prejudice. Why ableism does not arise in Bahai discussions despite the centrality of prejudice to Bahai teachings I do not know. With regard to special provisions, such thinking implies that we can know an autistic person’s mental capacity simply by knowing of them being autistic which sounds to me to be a type of prejudice. At the very least, if it is possible to quantify mental capactity, it is the adoption of a specific definition to mental capacity and one which should not necessarily play a role in spiritual meetings. I guess here we have stumbled on a very interesting issue, that being how or why should intelligence play a role in the organization of meetings which are intended to be overtly spiritual in nature? There is another aspect to the mental capacity division which is also very telling. Why would the question of mental capacity arise only in the context of autism and other disabilities? Should not the distinction of mental capacity be applied fairly across the board and thus people from all walks of life who have a lower capacity should be somehow separated into their own group?
 
Old 01-15-2013, 03:48 AM   #11
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Xue wrote:

When we lived in New York, I was even asked to take my son out of the room during a devotional because he was being too vocal.

You know Xue.. It would seem this incident you're citing had an affect on you that has lasted awhile..

I've raised four children among which were three boys...and I can tell you I would have readily accepted that they could be difficult at times (being too vocal and even rowdy a bit) for people to accept.

I had to remove them from meetings on occasion myself and I was sensitive to whatever was going on to know that.

Some programs I attended were more for children and they fully enjoyed it ... We ask a lot of children to be quiet and still for what to them must be long periods of time ... so special provisions should be made for them to have a place where they can move about and be "vocal" on their own.
 
Old 01-15-2013, 06:18 PM   #12
Xue
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Yes this certainly does have a personal dimension to it for me, such awareness does not really change my opinion on the matter however, and I still think that the topic as discussion is not really connected to my feelings. However I think we had a good exchange here and I see we can leave it at that.
 
Old 04-21-2017, 10:23 AM   #13
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Happy Ridvan everyone.
I have just joined this forum. I am wanting to connect with bahai adults with autism, especially women - is there anyone out there...
 
Old 04-21-2017, 01:38 PM   #14
Tony Bristow-Stagg
 
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Quote:
Originally Posted by Aqdasbeliever View Post
Happy Ridvan everyone.
I have just joined this forum. I am wanting to connect with bahai adults with autism, especially women - is there anyone out there...
Happy Ridvan to you and welcome.

Look forward to a chat or two.

Regards Tony
 
Old 04-22-2017, 07:18 PM   #15
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It seems that this may be a problem of skills and capacity available in Bahá'í communities.

Whilst, in some cases, autistic children may seem to be harder to integrate into classes than their peers, in my experience they usually are totally honest and truthful individuals. They seem to just have this virtue running right through them from very early on whilst some others struggle to acquire or be taught it.
 
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