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What do you think (as a parent of a child with special needs) What are the problems that you and your child are facing to adjust in the society or in his/her learning.

91 replies, Page 2

 Former member 2011-07-06 11:53:53

 

Rakshyd please do not put your kid in regular school, I would highly recommend a integrated school . Check possibilitiesunlimited I found a school through this website. An integrated school is not a special school, rather a regular school with special educator. For example my son cannot sit in a place for a long time, he needs to wander to satisfy his sensory needs, the school he goes to understands this. Also his vocubalary is really limited now, he say food, please leave me, dad, mom, water, very basic thing, the school has been really patient with his needs so far.

 

tanujaravi 2011-07-06 12:43:44

 

Dear All,.

Got some few more experiences to share.

In our neighbourhood there is a lady whose daughter is in my son's class only.Once she came to my house complaining that your son doesn't know how to behave when my son had not done anything to her daughter.I told her that I know my son and my son is very quiet in nature and he will not misbehave but still she was not convinced.In the same year My son won "Best Behaviour " award in school.The lady got a tit for tat reply.

 

My son is very innocent and good.His friends sitting near him copy my son's worksheet during exams.There is a naughty boy sitting next to my son.He does all  naughty things and troubles my son.He will steal my son's stationaries.Most of the time I had to explain my son not to allow his friends to take his stationaries.He tries to stop them but they won't listen.They do it for fun and  say certain things to my son just to pull his legs but my son takes it seriously.After explaining him many times now he is some what comfortable with what they say.He doesn't feel sad and takes it sportingly.His stationaries don't  get lost much  like before.

Inspite of all the above incidents happening with my son  He has never taken any of his friends stationery still date and bought it home nor he has copied in his exams.He has  never stolen anything till date.Usually children have the tendency to imitate their friends.I am really proud of him that he is not copying unnecessary habits from his  so called NT friends.

My son is doing I.C.S.E syllabus and he is in  3rd std.He goes to a main stream school.He is the only boy  with PDD amongst  40 other NT kids.In his school  there is no time table given for exams.It is a surprise test.My son  doesn't  know tommorrow which subject is going to come for exam.Inspite of all this He scored between 80-89% in  academics for the last two years.

My son is very polite  with his friends.He will ask politely to return his stationaries by using words like "please".

Many times the bullies and most of his friends take undue advantage of his goodness.

The teachers are aware of his PDD.

Yesterday my son told me the following incident. One of his  friend  tells him to do whatever he says like picking up his pencil , rubber etc and if he is not doing  he threatens him that he will take my son's pencil box.So my son is doing whatever his friends say out of fear.They do this when the teacher is not in the class.

I told my son yesterday that he should not listen to everything that his friends tell him to do.If it is their pencil, rubber etc which has fallen ask them to pick it up themselves . I told him not to get afraid and tell the teacher. Rest  I will  write later once he comes from school and I  get a feedback as to what he did.

My son knows that he is not physically strong to fight with his naughty friends.So one day when his friend took his pencil , my son did an idea ,while his friend was talking to other friend my son noticed his pencil in his friend's bag and slowly took his pencil  back for which his naughty and smart friend said  Oh so you finally took your pencil back.Yes said my son happily.

I told my son when your friends take your stationaries you should be alert  for which he replied Mom I can't go on seeing what my friends are up to . I need to copy notes from the black board otherwise teacher will rub it.

I can see a consistent improvement in my son though  it is a slow process.

Everyone has his own share of up and downs.Problems and new situations keep on coming on an  online basis but we need to keep going .

Friends do pour in your feedback , suggestions.

Kuldeep singhji  do give your inputs on the above.

Regards

Tanuja

 

 Former member 2011-07-06 13:00:07

 

Tanhujaji you write  from the heart, really simple terms, on your first hand experience with your son, which is helping parents like me, gives me hope that my son too will do academically well. I totally agree with you that our children heart is like gold, they don't lie, bully, cheat, or ill treat others, usually they are the viticms of bullies in the school. Countries like USA have very strong anti bullying rules, India is really bad in that area nor any awareness is there. The need for school is try and avoid bullying, most of which takes place during the lunch or recess time, but during the same time the most important part of the day socialization also takes place in school. Our children are usually left out of the socialization process which is very important for the holistics development of the chidl. I wish a shadow can be appointmented for children with pdd so they can learn socialization. I think your son is doing wonderful. Also I feel my dealing with these bullies in younger age prepares them, but sometime they also begin to hate school.

 

Neethi 2011-07-07 15:18:21

 

Hi Rakshyd,

I stay in Bangalom ...Pls be positive...ur child will slowly learn to mingle...Give her some time....restrict her TV watching..Involve her in active conversation.....Keep urself surrounded by positive people...It helps....

Tanujaravi, it seems like u have stolen words frm my heart...My child too is v innocent..He dosent know how to lie,how to cheat how to fool anyone...Due to this I have immense respect for him..He is a gem..a true n a rare gem....But people around fail to recognise this..They find fault in each n everything he does,while I know he isnt harming anyone in anyway!!! If hes playing on his own,that is a problem,if he is talking on his own that is also a problem,if hes running around that is also an issue...People never stop talking..My son is extremely fond of machines like lifts,escalators,mixie...He can spend hrs examining its working...This can get a little embrassing at public places....But still i have decided to keep all my feelings locked in my heart.I want to giv him the space he deserves...give him scope to bloom,Irrespective of what people say or feel!!!

After reading thru what u have written i feel my son can do well in school if i work on him...Thanks for all that u have written...reading stuff like this gives me hope n motivation to work better....God be with all of us...

 

 

NJ 2011-07-07 18:15:36

 

spaceandtime,

I agree with you that risperidone has some side effects which can lead to other problems if taken for long period. Thats why I was stressing on healing the cause rather than just treating the symptoms. I know 4 children who started speaking after they were given risperidone. 3 have discontinued after couple of years and 1 is still on it(His mother said that she would withdraw it by this year end). 2 recovered completely within 2 years, 1 still has some tantrums but nomore lack of understanding or speech issue and 1 is in the process of recovery. At present it is the only drug that the FDA has approved for use with autism, but have stated that it should be reseveed for autistic children above 5 years old. But pediatric psychiatrists give it for children who are as young as 2 years old or even less. They say they give only mild dose , like 0.5 mg.

I myself do not give my son risperidone. My son has a lot of food allergies and so I am tackling this through dietary intervention with supplements.  Touchwood, For the last 7 months he never required an antibiotic. Else before the diet, he used to have recurrent chest infections and loose motions and had to take antibiotic courses atleast twice every month. So by 2 he has had atleast 30 rounds of antibiotics along with various cough syrups and paracetamol based meds(we found that he is sensitive to paracetamol also).

I was thinking of trying homeopathy for his anxiety. His anxiety has considerably decreased for the last 1 year. But when he becomes anxious he attracts lot of attention from public. For instance if in a party another child grabs his toy then he becomes increasingly agitated, screams, becomes breathless and says adi, adi and shows the hitting action to the boy and start hitting me if I take him away. I know All children, even those not on the spectrum, get angry when someone takes their toy. But my son becomes agitated enough to hold the attention of the entire room for sometime.. It becomes a scene.

 

NJ 2011-07-08 05:24:30

 

Tanuja,

Does/Did your son have aggressive behavior? This is what atleast half of autistic parents struggle with and its really a struggle. If you do not face that, then you are one of the fortunate among the parents with kids on spectrum IMO. If your son has that, please let know what you did about it.

 

NJ 2011-07-08 05:29:09

 

spaceandtime,

Which homeo doctor does your son go to?

 

tanujaravi 2011-07-08 15:25:27

 

Dear Neethi,

Do work on your son.He will definately do very well in school.

We parents must give our children space so that they can bloom because they deserve it.

Dear NJ

My son also has his aggressive behaviour which he displays sometimes in public and most of the times at home.For us too  it is embarrassing when he displays in public especially but  I  have seen NT KIds being more aggressive and people don't see them because they feel it is part of their naughtiness just because our children are labelled they watch our children like watch dogs.Anything they do is not normal.

My son displays sometimes aggressive behaviour and not all the time which is okay , there is so many other points in him which is very good then most of the NT kids but this good points of them doesn't get highlighted  in public but we parents know our children right so I can bear his aggressive behaviour it is okay with me because I think these childrens are just trying to take out their frustration through aggressive behaviour towards this society which doesn't accept them whole heartldly when they totally deserve to be accepted by the society and treated like any other individual.

Regards

Tanuja

 

 

tanujaravi 2011-07-08 15:31:26

 

Dear All,

Continuation to the previous one.

My son reported to his teacher and the teacher fired that naughty boy and my  sonwas happy that he solved his problem.The teacher changed the naughty boy's place.I am happy that my son opened his mouth and narrated his problem to the teacher.

A few days back I had eye infection and my eyes were paining and itching .My son used to pray god everyday asking him please god let my mother become well and to my surprise the pain which had not gone  for so many days even after applying eye drops,visiting doctor  etc starting reducing and now it is not there.I told my son I recovered only because of your prayers.They truly have a heart of gold and god will bless and protect them always.

 RegardsTanuja

 

 

 Former member 2011-07-08 17:49:48

 

Such as sweet story. I am glad that he spoke up for himself, it is heartening to see his courage to step up. Also he is displaying empathy ( they say our cannot display that trait) , truely you are blessed.

 

VL 2011-07-08 18:30:31

 

Hi All,

  I had been a slient reader of this thread with is giving lot of insight, tips and positive note to others. So now i pitch in to post my thoughts

As the title of the thread asks the problem faced by parents of special child. I would say is getting their sustained attention to make them sit for a while so that we could spend time and teach them to improve their skills. Improving their compreshension ability and there by improving their articulation skill. Making them say verbally to even on thing that they know (which most of the time they want to say by actions or pointing)

@tanujaravi, my heartfelt kudos to you, you are doing a fantastic job by devoting your entire time for your son and that is clearly evident in his academic achievement / best  behaviour award etc. This is lot of encouragement to other fellow parents to think that one day our kid will also be able to achieve.

I would like to know from your experience on how was the initial days of your son and what was done to bring him to the level that he is today. In the sense, from when he started talking, how was his speech/communication initially? how gradually he improved? Also how did you interact with his school when he started in KG class. How was his behaviour/speech/communication that time? How was his interaction in school for the academics ie will he reply when the teacher asks him?

What age you were able to identify his PDD? how long did you give therapy? Did it include OT and speech also. Were there any other therapy like ABA or play / pet therapy also

Also i see from your writing that he almost communicates on daily happening at school. From what age he was able to tell the happening at school. Initially how was his reponse and how did you improve it?

B/W what does NT kids mean?

By the way, I have a 3.2 yr kid who has joined pre-KG this year. She has some difficult in speech/communication. Speaks only short sentence / broken sentences which i join to understand. The main issues is, she has lot of Echolalia and keeps repeating things even when not required in the context. In other words she will keep on talking whatever she knows even while playing.  Getting her sustained attention span even for few mins is a task. She is also Hyperactice and keeps moving/running most of the time. But if she likes some activity very much we can make her sit for even 20-30 mins. But it has to be something new.

She is also bit adament (i.e) if she wants something she will want it right away.. otherwise she will keep on jumping on the floor, get fidget/stuborn but i have not seen exhibiting any agressiveness like thorwing things or hitting self or others but she will keep in whining till she gets that.

However she seems to be good/better on acedemics part i.e she knows A-Z, 1-25, colours,shapes etc (all these got developed when she went to play school itself), now after going to pre-kg she sings rhymes with actions also. Infact i would say she can sign even situational rhymes for eg if she sees a sheep on the road she would sing "Ba Ba black sheep" or if she sees a star she will sing " twinkle twinkle". Likewise if she sees any picture on her books she will immediately explain the picture like "Monkey is jumping" or "Elephant is kicking the ball" (however it wont be in a very clear right form of normal speech).  She cannot end a sentence appropriately with 1st/2nd or 3rd person it will be just some jumbled word in the last. Mostly somtimes while ending she will refer to herself.

I would like to hear from other parents also on any inputs

Thanks

 

 

 

 

NJ 2011-07-08 18:57:36

 

tanujaravi,

On this part of your message -  "but  I  have seen NT KIds being more aggressive and people don't see them because they feel it is part of their naughtiness just because our children are labelled"

I know labelling can make a person biased to the child. But if a child has nearly neuro typical(nearly NT) needs then why should a parent reveal the labelling of the child. If the child is severely autistic, then perhaps the parents may need to explain to get others understanding. But if their child is nearly typical which I think your child is at the moment then I do not think that you need to explain to anybody your childs actions since most parents may have gone through 80% of what you are going through. Now if you were talking about a child who was severely autistic who has improved to this extent and the people knew the label already by then I understand. Nowadays many children have a few features of autism and hence they fall under the diagnosis of mild autism, mild adhd, pddnos etc. Also, the NT kids that you state as aggressive may actually be kids with bipolar disorder, manic depressions,adhd or even pdd nos, but possibly their parents does not let out the diagnosis or worse their parents do not know that they need help. In my flat complex just couple of weeks ago I found out that one 5 year old child(seemingly normal but does not look smart) goes for special education and one 7 year old child was assessed by his school that he needs OT as he is unable to sit in a place. These childrens problems were not evident perhaps in their early stages in life, so they are getting help late. Or perhaps their parents ignored their problem thinking they would grow out of it. Each year there are more and more children who who some or other features of autism, adhd etc. When I was growing up me and my brother never used to hit our parents and I never saw any kid or my cousins hitting parents when they were toddlers or children. This attitude was not very heard of a generation ago. But nowadays many children hit their parents. The last time I was talking to one of the parent saying my son hits me sometimes, she said, thats ok, my son also hits me.  This behavior seems to be like accepted these days....

 

tanujaravi 2011-07-11 09:43:44

 

Dear Spaceandtime,

I am blessed but I feel we all are blessed.

He doesn't display  empathy.It is just that I told him to tell it in school, with great difficulty finally he has spoken to his teacher after been troubled enough.

He doesn't participate in anything in school nor he replies for any questions asked by his teachers.

He doesn't  talk at all in school because he is afraid of his teachers and class leaders because he feels if he talks  either he will get shouting or punishment.His teachers told them "not to talk" but he has literally taken it on the face of it and he doesn't talk at all. I feel sad for him because if he communicates he will improve his vocabulary and social skills too. His friends complain to me that Harsh doesn't talk to them at all in school. Only if they meet him outside he will at least say  "Bye " to them while going home.

He doesn't want to go for any classes like drawing, singing etc nor tuitions.He wants me to teach him.

We have a long way to go there is lot of improvements still required in him.His improvement is very slow but it is consistent so I am satisfied.

Regards

Tanuja

 

 

tanujaravi 2011-07-11 10:12:42

 

Dear VL,

Thanks for the encouraging reply too.

We came to know about his PDD when he was 4 yrs. After that he went for speech therapy and OT. Now for the last  2 years  we are not doing any therapy for him.

The OT therapist took his therapy hardly for a month  and said that he cannot take it further because his case is a very mild case and he had severe cases to handle.

I never felt what the therapist did was right? Problem is a problem whether it is mild or severe it needs to be tackled.

Where should the mild PDD children go for improvement ? I  said to myself that God will help us  and stopped the therapies and  now I have only one therapist  to help me which is god itself.I have surrendered to him  and asked him to protect and help us.

He doesn't communicate the daily happenings  in school  I  dig it out from him.

Regards

Tanujaravi

 

tanujaravi 2011-07-11 10:36:57

 

Dear NJ,

His aggressiveness is in the form of  hitting himself or crying unnecessarily suddenly without reason. He doesn't  harm  others.

He looks normal but sometimes he behaves  like a LKG boy.From his funny behaviour  itself  outsiders can make out there is something wrong with the child.As parents we don't  take any pleasure in announcing our son's problem to the world.

The neighbour lady about whom I spoke in my earlier mail  has spread the news to our society  that there is something wrong with my  son and hence in our neighbourhood my son  is not having any friends.He plays at home with us.He tells us that mom and dad you  are my best  friends. The neighbour lady came to know from the school that my son is having a problem. The neighbourhood children inspite of my son talking to them politely to make friendship with them just ignore him and tell him rudely that he is not their friend.

When a small child in our society came to play with my child  one boy  whispered something in the small child's ears and the  small child also stopped playing with my son immediately.

Even in school the friend whom my son thinks is his best friend has changed his behaviour towards him now.Last year he was good to him. He sits next to my son only. Whenever my son tries to talk to him  anything he speaks to him very rudely and rudely says "What, I should do puja or what"?For last  one month he was sitting with our neighbourhood girl who is in my son's class only.Since my son is not talking at all in class the teacher asked us  who was his best friend in school  and hence now she made him sit next to him so that   my son opens up.

Regards

Tanujaravi

 

 

 Former member 2011-07-11 10:59:15

 

We have the same fear of telling about your son to the world, we do not want him to be rejected by the society. But on the other hand if someone does not want to talk to your son, they are missing out on enriching engagement that they could have had with a wonderful human being the loss is theirs not yours. One of the parent where my son goes to school, has invited my son on a play date, she knows about my son problem and her son is NT, they both had a blast in their house, I am so grateful to her for inviting my son on play date. So good people go exist, tanujaravi, hopefully you will be able to find him a good play date.

 

tanujaravi 2011-07-12 09:18:27

 

Dear SpaceandTime,

True good people do exist but they are  very few.

You are truly blessed that your son is invited by another friend to play inspite of knowing his problem.

How old is your son and which school does he go?

You stay in Bangalore right. I too stay in Bangalore.

I told my son that god will surely give you a very good friend , you just need to wait for the right moment to come.

I tell my son You are good and mature once your neighbourhood and school friends understand you well then they will also become your friends.

In my apartment there is a new boy who has come who is of my son's  age. He is in our floor only.when he was new he came to my house and made friendship with my son. His mother also spoke to me.But once he got new friends he stopped coming to our house to play  with my son and his mother also doesn't allow him to come nor she entertains us if we go to their house.She has stopped smiling and talking to me suddenly.This is how people are,  too selfish. When she was new she came to my house to know the shops,market etc with respect to our locality. The moment her work got over even smiling stopped.

I don't give GFCF diet to my son.

Inspite of everything we are facing with god's blessings.

Thanks for your encouraging reply too.

Friends do pour in your feedback, suggestions etc.

Kuldeep singhji do pour in your inputs.

Regards

Tanuja

 

tanujaravi 2011-07-12 09:47:51

 

Dear All,

I have actively participated in the above discussions.Except few parents I don't see other members participating actively in the discussions.Kindly do pour in your suggestions,views and experiences with your child.It will really help each other and keep us all motivated to do more for our children.

Kuldeep singhji  you have started this thread but you are very passive when you should be the active participant since you are special educator also.We all would love to hear from you. Your inputs on various issues is required to help us to move on with our efforts.

Regards

Tanujaravi

 

 Former member 2011-07-12 10:58:34

 

I live in bangalore too in the indira nagar area and my son is 3 year old. Getting friends is tough, because communication is key to friendship and to develop social relationships. There is workshop on social relationship on the month of august check out aba-india.org.  Also make sure to tell social stories to your child, we will have to teach them everything, how do build conversations, how to make friends and so on.

 

NJ 2011-07-12 18:44:52

 

Tanjaravi,

I understand about the making friends issue. Children can be very mean. If they overheard something which is discussed then they will spread to other children and alienate also. Physical disabilities can bring about sympathy from others, but its very difficult to get sympathy for mental disabilities, since mental disabilities are hard to understand and is considered a stigma in society. My son is nearly 3 and he too has a tough time to find friends. He likes being with people but he more often he does not play with children. He plays with us or with our extended family like my brother , my sil, uncles, cousins etc. He plays tandemly with children, but is at a loss when they ask him questions..

When we were in Pune last year, a boy about 2 years older than him found him interesting and liked him a lot, gave him lot of kisses and asked to come to his house. Then we allowed him to come to the house hoping he would get a friend and start talking. But after a few visits the boy was only getting interested in my sons toys. My son has a huge collection of toys. The boy then started inviting his 2 cousins over and they all started playing together and kept my son away, inspite of being in our house and playing with our sons toys. when my son tried to sit behind him in the scooty, he would push him away and say, that he wants only his cousin and not my son. They also broke his tricycle and few other toys in the house. This year also, one boy from our neighbourhood came to our house to play. He came a few times and then started playing only with his toys and refusing to play with him. When he comes he does not go off easily and would even stay in the afternoons and night. My son has to be put to bed on time else he would make our life hell. Eventually I stopped encouraging children to come over since they would only play with his toys and avoid my son. So mostly all the socialism is done on the playground, parks etc. I'm now not that keen that he has a friend. As long as he is happy I am fine and I am working on him being able to understand and answer questions properly.

He does not go for speech therapy. I had a tough time to find a proper speech therapist and I had given up. The first speech therapist locked him up in the room with her, he was not even 2 at that time, and he was crying to get outside the room to come to us. After 15 minutes of crying she let him out and when he asked us to carry him, she told us not to carry him because he was in bad behavior. I continued to go to her since my uncle who is a ped told that I need to take him to a speech therapist, and I did not know of any other therapist. Then she started manipulating sessions and cancelling a lot of sessions . Even the sessions we had were just reviews and he was progressing on my own effort and my own method of teaching and not with her method of teaching. So eventually I stopped going to her. 

The second therapist was supposed to be an experienced speech therapist with more than 30 years of experience. He came home for assessment, mostly he was eyeing for the home therapy because thats a lot of money and he was staying close to our place. He told my sons head was big and to check it with a neurologist whom he had worked with. We told him that both myself and my husbands and many of our uncles , cousins etc had big heads when younger so it runs in the family. But he still insisted and asked us to contact that neurologist with whom he worked with and let us know. Probably too much experience got into his head. I also learnt later from another person that he was earlier that persons collegue in a special needs school and the children with whom he worked with only had marginal improvement. 

The 3rd therapist whom we saw put a lot of flash cards on the table and my son started collecting it. He already knew the names of everything in the flash cards. When he tried to take him away , my son started crying. When I came there and saw my son crying I inquired what had happened. He said what happened and so I need to be more firm with him!!!!... That was it I thought!. No more speech therapists for me anymore. He is anyway improving without them in speech, so why take all this trouble and I stopped looking for any more... So we are the best therapists for our children.. India has not reached that professional maturity as in States or Australia or UK regarding therapists or perhaps all the good ones migrate there. Even there I heard there are people that fleece the system. But there are lots of choices there.  Here we are stuck with very inexperienced people, or people who are not at all professional. To find a good therapist who can actually add advantage to your childs learning and not simply ride on their natural maturity is a challenge..

 

 Former member 2011-07-13 09:09:54

 

I did have similar problems with the speech therapist like you mentioned, but if you see they are less experienced, fortunately we have indeed found some good people. Especially now the therapist try different techniques, like floortime ( just play with the child with whatever he is playing with follow his lead, no crying whatsoever), neuro cognition therapy which is similar to play, they concentrate on holistics development of the child rather than just speech which is by product. Again we were torn between whether to signs or PECS, my son was getting really good with signs and able to communicate most of his needs, but due to social stigma we stopped, encouraging more to talk, his vocabulary is improving but really slow. Socialization only happens after fluent language I am not going too much concerned about it until he is 6 or 7.

 

tanujaravi 2011-07-13 09:31:00

 

Dear NJ,

I totally agree with you.

Even my husband and in laws say that it is your efforts that has brought so much of improvement in your son.

My family knows about my son's problem and they have been very supportive.

True Mothers are the best  judge for their children.

Teaching communicating  works better and faster in real situations for which they need to have friends of their age.

We can't  teach them socialising.Socialising  should come naturally and if it doesn't happen then they need to  have friends of their age to  learn socialising .Socialising is best learnt   in a group in school, playground, garden etc where they can meet friends of their age.With adults children can't learn how to socialise, they need children only.

In Bangalore at least  it is difficult to get social skills therapy for our children because it needs to be done in a group.What about other places ? Do they  have social skills therapy ?In  Bglr there are hardly one or two centres where they teach social skills in a group.Other bglr parents please correct me if  I am wrong.

Even I feel if  my child is happy playing alone let it be instead of finding friends for him who are too mean  or  may be he will get a  friend in future who is too good .We just need to wait for the right moment till then let them be happy playing alone or playing with us.

Regards

Tanujaravi

 

tanujaravi 2011-07-13 09:38:50

 

Dear spaceandtime,

Are you doing social skills therapy for your son?

Kindly let me know what are the therapies you are doing for your son and where are you taking him for the same in Bangalore.

Which school does your son go ?

Regards

Tanujaravi

 

tanujaravi 2011-07-13 10:44:23

 

Dear All,

The other day I had a good dreams.I thought of sharing with all of you.

We alongwith our children are all living together in a separate world created especially for us.We invented  a gadget which transforms other people's attitude towards us in a positive manner. The gadget has a transform button.When you want a person to be transformed you just press the transform button and the person gets transformed into a good human being.In our world there is no entry for the people from the scary world.If they want entry they can have it if they treat our children like them.Our world is really beautiful and we are all living very happily in our world.There is love and peace everywhere.The news of our wonderful world reached the scary world and scary world people are eager to see our world and they come to have entry into our world.We put a condition to them either you treat us like you or get transformed and come into our world. In our world there is no jealousiness, hatred, anger etc.

Thus all the scary world people in their eagerness  to come into our world to see what is happening get transformed and there is a miracle which takes place in our world.Without our realisation our childrens become normal and the deadly disorder called "autism" has vanished.We are all enjoying the happiest moments of our life by dancing , singing etc.

Moral of the story is  It is not our children who need to be changed it is the scary world people who need to change.If the whole environment is positive for our children our children will automatically improve without therapies, therapists, medications etc.

I have another dream that we all special parents  stay together in one locality and we set up a social skills therapay centre for our chidlren and we are all working in it  devoting our time and we hire therapists from abroad  who are committed professionals who work alongwith us in bringing improvement in our children and as days and months pass by we can see lot of improvement happening in our chidlren  and thus there is a happy ending to our story.

I wish my dream comes true for all of us.

 

 Former member 2011-07-13 13:18:58

 

tanujaravi, he is not going to social skills workshop in bangalore, because he is too little for that 3 year old, many 3 year NT have parallel play. But there are group therapies in many place, where do you stay I know a place in kormangala, I will send you a private message if you are interested. Did you attend the autism conference that happended in may it was very informative, there I met a parent who also wants to form a group, in bangalore so our children can interact with each other, so parents of special kids will not ask your any questions about your kid, since we already know what you are going through. By the way do you have a facebook id.

 

VL 2011-07-13 15:20:00

 

I am also at crossroad on finding the right speech therapist. I started with one about 3 months back in the same place where i give OT to my kid. But that person took only for about 1-1/2 months and then left that place. So i started searching again but didnt materialize.

As NJ had said, in the therapy sesssion they dont allow us inside to see what is done. Even today all her OT sesssion it is done in closed doors only. Some time i can hear her cry incessantly even for the entire 45 mins. At the end of the session when i asked why she cried to the therapist say that we make her do some hard physical task like pushing beanbag / running activity / walking with bend knees  etc then she doesnt like and cries. When i ask them still does she do it or she just leaves it. For that they reply that yes she does the activity but with resistance and crying. But never know what is going on inside. Many times i used to think why cant they put a CCTV kind outside where the parents are waiting atleast we can get a first hand info of what is happening inside, whether what the therapist say is right and to what extent it is correct etc.  Also other fact is my kid is in the last slot session which start as 7.45 as we need to get back from work and take her. The Therapy center is good 30-40 mins drive from our residence. As this is the last slot sometime it will so happen that there will only be 1-2 kids and also most therapist are Men and couple of lady therapist. Yesterday was one such day where there were no Lady therapist in the center and only 2 kids were there in the slot after 8.15. One was a boy and my kid a girl. All the more it was scary for me. Though i keep sitting in the seat  just close to the door. I just had to pray to God and Trust the people inside. As i mentioned earlier I used the continue speect after OT from 8.30 to 9.15 pm in the same center as we can avoid coming on daily basis and use that time to spend with her at home. That was also a nightmare as the Lady therapist would leave by 8.30 and only the guys will be around.  

Other parents, in your Therapy centers is there is any facility to see what is happening with the kid when therapy is given. How do you get feeback on your child's performance/co-operation there? still as our kids are not very communicative we need to trust what the Therapist say

After a good search for almost 2 months, i found one speech therapist near my residence she happens to be a Ph.d Student pursing her course in MERF. But as she is still a student, she goes outstation on official visit, she will say she will not be available for 1 class but her stay will get extended beyond a week and kid will miss 3-4 classes. When she is back my kid feel sick for a week and i was not able to take her, when my kid recovered, the Therapist was unwell. so the story goes on and after a break of almost 2 weeks i had a class yesterday again, where the ST was trying to teach my kid on the "Where" concept with flash card of Professional and their occupation like Where will the Dr/Nurse be? Where will a chef be? what will he do etc.. This is the 1st time that the kid is exposed to such a concept and i feel any kid will take time to grasp thing and in case like these kids in whom the language skill is still emenging they will need more time.  The Speech Therapist tried for 10 mins and as my kid was not responding as requried by her, she started saying she isnt reponding/concentrating, she needs to  co-operate, i think she is lacking atleast by 6 months.. I thought, BOSS that is why i have brought her to you.If there is NO DELAY and she is more reponsive & Concentrating i dont have seek a professional help and come to someone. The advantage here i have is this ST lets me be beside my kid and also the fact that she is also a lady.

Coming to the point on practicing speech at home i completely agree with NJ's views. As i am with my kid in ST sessions i see what is being done. They show pics/flash card try to explain them and ask question so that they know the concept and anwer relate to them. Not sure if these are only the preliminary steps in thearpy and later if they will develop into few more things to add on. Perhaps other parents who in the thread who had given ST for 1-2 yrs can give their perspective.

I work full time currently. My typical day of work is i leave before 8.30 and try to be back at 7. the rest of the time mostly 1-1/2 hr goes in going for Therapy session and then back it will be her dinner time and then sleep. Typically mornings there is no time except to get ready to school.  Her van comes by 8.15 and she will be back by 12.30 or so, then have her lunch and nap for 2-3 hr so essentially if i may definitely 2-3 hrs to spend which i miss during weekday. But in that also whatever time i get while brushing/bathing/feeding time i will keep on talking to her and make her respond. Essentially i spend little more time in weekends. As of now, i havent decided on any break due to priorities. But many times the option of taking a break comes to me and i keep questioning if i am loosing out most crucial time on her.

@NJ, when you say he is improving in his speech on his own with your effort,  is it the expressive and/or receptive speech. Is is able to answer your questions intutively like eg. if you had gone out with him and when you are back if you ask "Where did you go" or "What did you do there" etc is he able to answers

@ Tanujaravi, when you identified your son's PDD at 4. How was his speech and language.  Was he speaking sentences? how was his expressive and receptive speech? How did you work on them

 

 

Neethi 2011-07-13 15:31:48

 

 

Hi NJ,

I too have faced similar difficulties while i wanted my kid 2 socialise..I would say almost all the problems u have mentioned are v evident in my life too..I too feel if my child is happy being alone then why the hell should I force him to socialise...This world is a v cruel place...Tanuja has mentioned about her neighbour who turned hostile immediately when she came to know about her son's condition...I would challenge this lady to be in our shoes for a day...only for a day...then she would know what we are going thru as parents.....If these children are not accepted..how would they ever learn??Why should other parents have a problem when their children are playing with children like ours??

  Its pathetic! On this forum,whoever is reading this; this is a request,an urge...not to treat our children as animals...If you are having a child without any problem...then u r the extremely lucky ones....u have all the wealth in the world....And this dosent mean u can discriminate our children..Pls be aware, all that these children need is time....Time to grow,Time to understand the world...Time to socialise and Time to speak up for themselves....Pls give them space and the air to breathe....Pls dont snatch their right to live by passing nasty remarks about them especially while their parents are around...

I would like to share about two of my cousins....One, a male, who started talking while he was 1..Almost everyone predicted he wud be a scientist...The way he talked....was that impressive..Today hes 36 n jobless...Not even a graduate...Another cousin, a female,who didnt open her mouth till she was 3,hardly had any friends..even till date speaks remotely...not social,an intovert...People thought shes of no use...But she took everyone by a suprise wen she cleared CA exams and is dong v v well today...Life is not as we think it is.....Miracles do happen...So we need to be positive....who has seen the future..?Time does change..Things never remain the same...Change is rule of nature...For parents like us THIS PHASE TOO SHALL PASS..............:

 

NJ 2011-07-13 18:31:26

 

Tanujaravi,

I liked your dream about staying in 1 locality and having a good teacher to guide the children.

VL,

My son answers what, where and who questions. Sometimes he answers the why questions appropriately - For instance if I ask him to climb on the kambis in the playground, he will say no. If I ask why, Then he will say "because I'll fall down". Then I'll say to him- "I'll hold you so you wont fall down". Then he will climb. Similarly he answers some other why questions spontaneously also. But if he does not know the answer to a why question. He does not say "I dont know", instead he will say some random answer. For instance if I ask him a question he did not know the answer to earlier like for eg I asked- "why did patti go to Australia", he will say "because lion bite patti" with lot of actions and emotions(this month they are telling lion story in school). Then I tell him "patti went to australia to see Attha" and then ask him the question again, so he repeats it. I found this site a while ago where they tell social stories to a child to develop the childs listening skills and ask the child questions around it. Its good, but its a little pain to read but has got lot of good pointers- http://rsaffran.tripod.com/social.html#Set%20Original%20A

Neethi,

Its true, nobody can predict how a child turns out 100%. There are lots of factors involved during the process of growing up that will shape a childs future. Many children who are meek in their childhood turn boisterous as adults and vice cersa. Many children who do not study well in their younger age, are one of the top contenders in professional and competitive exams and vice versa. Many children who had a good and protected life in their younger days have a troublesome life after marriage. Many people put hopes on a single child and then they lose that single child later. At the same time, some people have lots of children, but no one to look after them in their old age. So no one can predict any childs future. We have to pray to God and leave him to do the best.

 

 

kinzang 2011-07-14 12:04:53

 

dear all,

i 'm really touched by all your experiences.just want to say one thing that you all are in my prayers.i hope &pray that god would heal &make yor kids perfect & make you all happy.

 

manessvijay 2011-07-15 08:29:13

 

hi kuldeepsinghjee,

i would like to read your experiences in dealing with an autistic kid on a day to day basis, at 1 to 1 base level, their progress, crossing each milestone.

pls. share your experiences

thnks

vijay. 

 

 

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