New parents to Autism. Need your guidance

147 replies, Page 4

priya1982 2016-06-13 13:34:36

 

@mp07, I am also from Pune. Could I have your contact#? Would like to understand how you did the diagnosis. We took our 3 yo son to a OT and she said that he showed traces of autism. However,i would also want to hear what a behavioral therapist says. Would appreciate your inputs.
 

Vinsss 2017-02-22 00:32:43

 

Hi Aks2, were you able to find gud center
 

neethu29 2017-03-07 19:53:46

 

hi all my son is 2 year 8 mnths and diagnosed as autism disorder.im shocked to listen this but as a mother i have to accept it and work on this .please will u all tell me how you will be bssy with ur sons or daughers .what are the things u play with them to engage and sit in one place.my son wont sit in one place always move here and there for no reason.as a mother i dont know anything about autism please u guide me what to do .what are the therapies which are must .and for eyecontact and all what u do mostly with your kids.please do reply
 


r9622 2017-04-06 18:44:01

 

Hello Rahul, Can you please elaborate more for the benefit of other parents in the group.What kind of symptoms your kid had and what kind of medication did Kalyan banerjee prescribe? did you see improvements every month? Is he specialized in Autism? please clarify
 

tishta 2017-04-11 12:04:41

 

hello everyone, my son is 2y10 mnths with signs of asd...we are from howrah, westbengal. where do i get good speech and ot for him...in kolkata....aslo tried to eliminate milk from his diet....but it has made him very weak and irritable....also heard about dr.ranga sai's homeopathic medicine for autism....thinking to start for my son....kindly give your suggestions......
my son is not hyperactive at home thatmuch....but out of home he can't be controlled,specially when he sees moving vehicles..., he can eat few things with his hands, can chew n eat and he mixes with children of his age...but his eye contact is very poor n n can't pay attention...he follows a very few commands.....what should i do and where should i start.??  kindly suggest, 
                                                                                                                                                                         regards snigdha
 

tishta 2017-04-11 13:54:34

 

Hello Rahul, good to hear about your son. ...did you give him other therapies apart from homeopathic medicine. ...n also gfcfsf diet? ?
 

Ash1122 2017-04-11 18:22:14

 

Dear Thishta,

Please share more about your kid.

We also have a kid who was diagnosed or mis-diagnosed with ASD/PDS/NOS by the same age around two years back.  Please share about his speech and ways of communication. Wither he expresses himself in a manner which is understood by people other then family members. Is the kid able to point out things which are asked to him like fan, mama, papa. Please get in touch with a good developmental pedestrianisation. Also look for any ABA Therapy Center near by. I hope you must have them in Kolkatta.ABA will surely help for your Kid. Along with speech therapy you should also go ABA Therapy

 Before going for any specific food restriction please get the kid checked with food allergy test. Please start interacting with him and make sure he is never alone. Don't allow him much to watch TV or mobile games. Please have as much as interaction with him.   

Please share more about the kid. Will try to share as much we can. 
Regards,


 


tishta 2017-04-12 17:26:16

 

hello Ash1122,
                                 
thank you so much,   

my son he uses our hand to point out to something he needs...finger pointing not proper, he can only follow few commands like come,sit bye ....,eye contact and attention very poor....can speak words like mama,baba and babu...,de (give)..only, he likes to play with children of his age and also his brother now 10 yr.., he points out to things which he likes to do...like when we r going out somewhere n we dress him he brings his own shoes to us, when some guests come to home he tells them to sit on the sofa through action and will close the door so that they don't leave, he can show eyes,nose hands, legs and tummy. He shows cat and dog in his picture book...while i show him in real..i don't know if he identifies them..he knows ball, water..when i tell him to pick up he shows or picks it up..his imitation is good...
 but again he does according to his interest...like he takes the pipe in the garden n does the action of watering the plants by touching the pipes to all the pots, he copies my maid ...tells her by action to wash her hands, then will show the towel to wipe her hands..., he imitates well.....me, his father n his brother....
thanks for ur suggestion ...n kindly tell me what all u did for ur child and what medicines and therapies did u follow...
                                              
regards Tishta


 

r9622 2017-04-13 12:59:25

 

Hello tishta, My kid is  also having  similar symptoms  as your kid  and he is 2 year 11 months old. We are planning to start Bio medical intervention.
 

Ash1122 2017-04-13 17:27:15

 

Hi Tishta,

It’s good you are observing the kid. It seems the kid needs attention and support from the family.

Have you in touch with any medical practitioner till now. In case yes then please share their opinion. In case no then immediately be in touch with at least two different “Developmental Behavioural Paediatricianâ€. The doctor will be able to diagnose and guide you better on this aspect.

Please answer correctly that earlier (means before your knowledge of kid’s condition) how much time the kid has spent with TV, Mobile, Music System etc. This also includes the time when the TV is on and parents are there watching TV but no interaction is going with the child. Any specific sounds, pictures on which the kid reacts. Anything which he tries to show you by pointing his finger? Anytime it has happened?

Another point of observation is that how long will he makes the proper eye contact? It can be measured in second or “meaningful†eye contact. Please share about it.

You also told about the natural actions of kids of his age like doing action with maid, watering action etc. what else he is generally doing at home. How he communicates with family members and other people at home. Is there a pattern which emerges out if it?

Is the kid has any food allergy. Does he vomits generally? Any complication of constipation? What is the sugar rich food intake and have you ever noticed any specific behaviour after intake of specific food?

You also have mentioned that his behaviour changes when he sees moving objects specially moving vehicles. Please check how he plays with toys. Is he more interested in the wheels movement of toys and vehicles?

Now coming upon the immediate things which you can surely do as a parent. To start with please immediately spending more “interactive and meaningful†time with him. Stop or spend less time with TV, Music System, Mobile etc. When kid is with you or family members then all the attention should be given to him. There should not be any stimuli or disturbance when we are talking or playing with our kids. Always revert to him. Complete the communication. If he shows you a car then immediately show interest in it. Say O-Wow, Super, Wonderful, Very Good etc. Then describe the Car. Colure, Speed etc. You must reply when he wants attention or not. Indulge him in communication.

Also take him out along with yourself. Avoid own vehicles like sitting in a car for a long drive with no communication. Try public vehicle but according to your needs. This allows him to interact and learn more by himself. From your mail I can make out that he wants to communicate but lesser words are there. Answer is to expand his horizon. Choosing a place to visit is also important. A park, zoo, boating, or just a visit to neighbourhood market is good. Anything with a leering chance. The more near to nature more better. Generally avoid shopping Malls and mechanical toys, rides.

You can also take him for walk in morning and evening. Let him play with other kids but in supervision. Let him encourage to talk for any requirement or other kids. Like food, water etc.

Next important thing is to prompt him always to speak. Always be ready to communicate. Give him reward if he says or ask something. If the kid himself asks that I want to go to market then immediate start a communication and stretch it to a level to ensure he will speak. Once you make the kid realise that he will be rewarded if he speaks correctly than half of the behavioural problems are gone because communication is there.

Start with this and will later share more. The list is long and need to be understand in accordance to the child. I am hopeful as you have written about your kid he will show improvement in 2 months.

Now what we have done, A Ha … it’s a long story but in cut short, once coming to senses we started to understand what is required. Didn’t believed on only one doctor and always have second opinion. Didn’t hid anything about our kid and started scouting for the best means to help. Learnt more about it. Got our self in the correct mode. Never left the kid alone. Spent as much as time we can with him. Never gave him any Morden medicine. ASD/Autism is mostly related to behavioural aspect of kids so we acted on that. There are only questioner based test to put a child in that bracket. (In case you require the same can be searched from internet or you may ask). Saved ourselves from doctors who within one meeting declare any child with ASD/PDD/NOS/Autism etc. We have indulged our kid with ABA Therapy, Speech Therapy and later put him to pre-school.  

I am hopeful it’s enough for you to start with our experience. I would also like to share what I have been told (he made me understood perfectly) by a Professor who worked on Autism/ASD for about 30-40 years. He said†Please don’t expect these kids to BEHAVE like mini ADULTSâ€. Every kid has its own persona and varying time to develop it. Give them correct guidance, love and encouragement and they will grow.

Hopeful that what we have learnt should be helpful to any other parents in any ways.

Regards,

 



 

anupama123 2017-04-15 14:40:29

 

Hi ash1122, Great advice. Lot of what you told made lot of sense. My 3 year old is speech delayed and shows some signs of autism. He does point, understands all the commands, no heavy tantrums and has just started to make small sentences. But still not on par with his peers. He is hyperactive. His eye contact is not great and he has a great difficulty paying attention when we talk to him. He is not very social with kids but does say his name and age when asked by strangers. He is very loving and understands all emotions. We got him evaluated by a psychologist and she suggested it's pdd/socio communication disorder with hyperactivity and lack of attention. He has just started going to speech therapy and ot. After reading countless articles on autism and forums like these, I have started with gfcf diet though I don't see any great changes in him. I have a Skype appointment booked with Dr Deepak Gupta in 2 months for biomedical. Can you help me with the below 1) Did you go GFCF diet for your child too? Did it really work? Was your child misdiagnosed? How is your child doing now? 2) Should I go ahead and try biomedical? Was there a reason why you didn't go for biomedical? Thanks,
 

tishta 2017-04-15 19:35:07

 

Thank you so much Ash1122.....will definitely follow. ...Thank you. .....
 

tishta 2017-04-17 11:56:27

 

Hello r9622, did you consult dr praveen saxena. ....pls share your experience. ......also are you giving your son homeopathic medicines. .....pls share
 

Ash1122 2017-04-17 13:32:11

 

Dear Anupama123,

You already know that your kid has a delay in speech then how come he is PPD?

Is delay in speech is due to PDD or PDD is diagnosed due to lack of speech. Is the Psychologist is accurate? Has not your Psychologist not shared the GYAN that it’s MILD? How surely the psychologist judged the kid for PPD not for Speech Delay. 

Doesn’t it make sense that the lack of Attention, Hyperactivity is due to Speech Delay. He has all other parameters correct. If the kid didn’t have the words to communicate then how will he express himself and start a meaningful communication. Here we the parents have to come into picture to help him to start a dialog. 

It has been seen in multiple cases that when the kid’s don’t have a clear expressive verbal communication they try to be more hyper active. The kids tries to accommodate their lack of speech with their activities. Because of this they drive them self into their own world as there channel of communication (actions) and ours (verbal) is different. This creates more problems.

 He is hyperactive because he is not speaking currently and it’s developing into a specific behaviour. Correct/Check this behaviour and all will come back on track. 

 Here we have to generalise all which is written in various articles in the net :). Please develop strategies to communicate with your kid. I have written earlier what I have used.

 Now to your answers...:)

  1. a) No GFCF diet for my kid. Only reduced dairy contant (only milk practically) after checking food allergies. b). Can't comment. c). Surely the child was misdiagnosed. d). The kid is regularly going to pre-school. I feel his Speech is delayed by 6-8 months.  

 2. a) Its purely your call to go bio medical. b) My reasons for not going biomedical was that I researched about the diagnosis/prognosis, Always had a Second opinion, Checked with all system of medicines and met there experts as well, relied that behaviour can be developed/altered and worked upon that.

 Hope was able to provide you some info.

 Regards,

 

anupama123 2017-04-17 16:28:37

 

Hi Ash1122, thanks so much for responding. I am not sure if its pdd. When I asked my pschycologist if my son has autism, she told he has socio communication disorder(that's what is mentioned in his report) and even if he has pdd, it is very mild and assured me that his prognosis will be very good. In VABS test, his receptive skill was almost 10 months behind and expressive skill was 4 months behind his age. When I do his atec test online, it's around 20-25 which suggests it's a very mild case. Like you rightly pointed out, personally even i feel with age and maturity lot of his symptoms like hyperactivity and speech should get better. His lack of attention could be because of his lack of understanding of what is happening outside and hence tends to be on his own without engaging us with questions/conversations. Thanks so much for the great insight. Since I was working, I feel me or my husband couldn't give him the time which he deserved in his initial years which could be a partial reason for his delay in his speech. I have quit my job now just to make sure he gets everything he needs. I have also started his speech therapy and OT thrice a week. For aba, I have become a paid member of rethink.com and am trying to apply aba strategies with him throughout the day. Gfcf and biomedical hasn't worked with some kids but more interaction and therapies have always helped all the kids and I am going to put more effort on that direction. Of all the advices and inputs all around, I liked your advice the most. Thanks a ton. Really happy to know your child is attending a preschool and his langauge skills are catching up.Lastly, if you don't mind, can you share what your child's atec scoring was a year back and what is it now without going for gfcf and biomedical? I too totally agree like what you heard that we can't expect kids to behave like mini adults. All kids have their own development cycle and they bloom accordingly.
 

Ash1122 2017-04-22 14:04:06

 

Dear Anupama123,

Generally the delay in speech is concerned to be connected with ASD/PPD NOS/Autism etc because it is observed by parents by the age of 2-3 years when it’s the time as per the milestones to develop the speech. It has to be understood that speech delay always should not be linked/termed as ASD. It requires understanding and proper diagnosis at the end of care giver, therapist, treating doctor and parents. ASD itself is very big term which includes S as SPECTRUM.  When there is no answer then the kids are put into Spectrum.  A child at a particular point of development cycle will be in spectrum but after some time he is out. I personally believe that rather going much into details we must work on corrective strategies. Speech and language are two important parameters which brings any kid within the bracket of ASD many times wrongly. 

Its good that you giving time to kid but make sure he is always connected in any productive activity.  Apart from these OT/ST I feel that you must go for ABA therapy sessions from professional therapist. This will provide the kid the discipline for sitting and focusing. This all will be over in 6 months. Also the kid will be exposed to various therapist and a lot of interaction will happen with other people. This will also act as stimuli with the kid. Basically you will understand how to prepare the atmosphere (sitting environment, concept of reinforcer) for kid to be prompted for focusing. Then you can start of your own.

Now to your queries J …

I completely understand your reason for asking the question. We after knowing that there is some help required to our kid we got him diagnosed at all levels. The diagnoses started from one level and start coming down towards normalization with in a span of 30 days. I notice this trend and met with a concerned subject professor who laughed and asked me to just focus on corrective steps only. He indicated that ASD/Autism all is a big business and a commercial activity. You may also check with some experienced Homeopathic doctor. But best help or intervention is the time spent with the kid in a meaningful activity. Don’t leave him alone in any case. Give them time and attention and see the result. Hope it is inline what you asked for..,.

Regards,

 

anupama123 2017-04-26 16:12:03

 

Hello Ash1122,
Thanks for the advice. I am starting ABA for my son from a professional in couple of days. Even the ABA evaluator, spoke something on the same lines as you and told that we have to focus on getting his interaction better and all the other things will fall in place automatically. He also stressed on the importance of spending quality time with the child and making him understand the world better.  




 

Ash1122 2017-04-27 19:12:12

 

Dear Anupama123,

Wonderful. Just start the ABA  and make sure that he is always happy to move to therapy session. The kid initially will resist the change. Engage him. They will provide the plan. Also in the initial days just focus on enhancing his focusing and sitting capabilities. Also the ensure that he is always engaged correctly. 

 

PavanS 2017-04-28 15:00:34

 

Hi Rahul,

Please share your contact or mail id please...

 


anupama123 2017-04-29 16:50:57

 

Thanks Ash1122. Can i have your email id? I have some specific questions. 1) You said all kids at some point in time are under spectrum and then they come out. Is this true for all the kids who start with mild autism or only the one's who were misdiagnosed? 2) Do the deficits which our kids have close once they go through these therapies or is it a life long learning for them even after the therapies end to keep their pace with other kids? Posting these questions in public so that it beneifits everyone. I could ask these question to a doctor but i wanted to know the answers to these questions from a parent like you. Regards, Anupama
 

Ash1122 2017-05-02 18:13:44

 

Thanks Ash1122. Can i have your email id? I have some specific questions. 1) You said all kids at some point in time are under spectrum and then they come out. Is this true for all the kids who start with mild autism or only the one's who were misdiagnosed? 2) Do the deficits which our kids have close once they go through these therapies or is it a life long learning for them even after the therapies end to keep their pace with other kids? Posting these questions in public so that it beneifits everyone. I could ask these question to a doctor but i wanted to know the answers to these questions from a parent like you. Regards, Anupama
   

Dear Anupama, Please check the signals and simptom for SPECTRUM.  Please go into details for diagnosis of ASD / PDD NOS/Autism. Classical Autism is generally visible through naked eye. But when any kid is in SPECTRUM then these minutes detail are generally observed by professionals (Psychologist/Psychiatrists/Developmental Behaviour Paediatrician).  Even there are cases that even doctor mother father dont have noticed these behaviours. Any kid in developmental stage will learn, rectify, relearn any behaviour till its not  socially acceptable. For your First question please ponder by yourself.

Generally it is seen that ASD simptoms, characteristics  or impressions which are related to behaviour (most cases lie in this arena) are bound to be modified by these intervention therapies. Once the kid is mixed with his age group at school then the group effect will teach him to be on correct side. He will learn from there and with appreciation from parents and peers, things will fall in place. Mild Autism is nothing. It requires our more attention and affection. Hope able to point out to something. 
Yesterday I was talking with a Journalist and a senior Occupational Therapist on the same topic(ASD in kids and specifically mild). Both understand ASD and all because of there personal experiences. They said that if probed properly then we must come find a scam and system to grab money from parents. Just think why mild ASD generally happened to affording parents....
Regards,

 
 

anupama123 2017-05-06 11:07:23

 

Thats a very interesting observation Ash1122.. Made me ponder about it for quite sometime. Yes, i do agree only affordable parents have their kids diagnosed with mild pdd-nos/autism. My child behaves and acts very normal like any other child except for small difference in speech and attentiveness. Even that has improved from the time therapies have started and i have started spending more time with him interacting. I hope and wish that once his nursery starts he behaves and follows instructions like other children would. Do you have any suggestion on how to make him like his school? My son used to hate going to play group in his previous school and would cry everytime we used to dress him with school uniform. In june, he is starting a new montessori. Do you think i should tell his teacher about his attention and language issues so that they can provide individual attention? What did you do when your child started going to nursery? Did you inform the teacher about the diagnosis? Does you child love going to school? Sorry for asking too many questions :-)
 

Ash1122 2017-05-14 02:52:44

 

Dear Anupama123,

Sorry for being late€ was busy with my efforts to ensure continuous monthly interventions for the family :)

Wow, its good news that the kids starts improving. But in any case don€™t leave the intervention given ABA, Speech Therapy, Occupational Therapy, etc. And yes the best medicine is your time and interaction.

Now coming to question based upon our experiences. I have sent my kid to two pre nursery schools. 

One was before the diagnosis. A BIG name. There he has cried a lot in his starting days. Later he accepted the fact. He also cried a lot at the time of wearing school dress. But he visited that school only for 2 months.  This was past. We eliminated the memory of that school.

Now the current pre-school is chosen carefully. Not a very big name. Ensured that the owners/principal understood why we are here. Asked them what else the school provides besides education. Told them that please engage him in as many activities as they can.

My only request to them was to make sure that he is never forced for any studies but should be always included in any other activity (ensured it), like fancy dress, dance show, fashion show, group singing, any group activity etc. And we prepared and invested in all these activities very seriously. Believe me, it required a good amount of choosing right kind dress or equipment :) . It paid€. The kid gained confidence in school. Teachers appreciated the efforts. And as anticipated the group of kids at school helped to him to encourage him to speak. The best part was he got the speech therapy from the kids at the school because we ensured he is befriend with the most two talkative kids there. To gain there confidence (kids at school) we gave parties to them, Birthday Parties, (monthly birthday parties). This was done with best of the cake (kids liked that and different every month) and gifts for all kids and teachers. Sounds little erratic but it really helped. Try it.

Asked teachers for special attention for speech and attention. Requested the teachers to make sure that he is assisted every time, to start communication with the other kids. In the start we asked him to wear whatever he wants but prompted him to choose. He obliged us and going to school become fun. We waited for him to return from school (9 to 11.30 AM) and asked every time what has happened in the school. We showed our eagerness to know what has happened in the school. We prompted him to speak him that. We show our very interest in whatever kid and friends has done and how. Prompted him to speak in every possible situation. Now he is himself going to school and wants to participate in the events.

Request you to DESIGN SCHOOL GOING EVENT as a fun activity for the kid. Before our kid started to go school, we visited there and explained the principal about his behaviour and speech related issues and requested them to help. For some days we were there. Played with him there till he gained confidence in at least one teacher. Its the group effect of the school which positively affected upon him. Even now when there will be summer holidays, we will ensure he will attend the summer camps besides his therapies.

Before answering your emails I always read your earlier mails. Its my belief and feel (based on your description of the kid in question) that it will hardly take only a year to correct the behaviour. But in any case don€™t leave the therapies early. 

Hope it will help you in some way to plan your kids school going programme.

Regards,

 

 

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