New parents to Autism. Need your guidance

116 replies, Page 5

anupama123 2017-05-23 11:36:11

 

Thank you so much for responding Ash1122. I assumed you would not reply since i was asking way too many questions to you and hence i didnt login to parentree for some time. Firstly,my heartfelt thanks for describing about everything you did for your child to help him in school. They were really good ideas. I am going to do the same for my son. You are a great parent. I have also put my son to a small montessori near my house to make sure he can get good individual attention. I will talk to the concerned principal and mention her to include my son in more extra curricular/ group activities like you did. Also i want to thank you for suggesting aba for my son. I had inititally thought since his issues are very mild he mighy not need it. But he is showing amazing improvement since he has started it. I was waiting for him to ask me questions from a long time. All of a sudden he has become so inquisitive after we started aba. He keeps asking me whats this, whats in there, who is this, what are you doing and everytime he asks he looks straight into my eyes till i answer it. As a parent you must be knowing how nice it feels, when your child initiates questions/conversations. Eventhough he is asking me questions, his language is still not perfect but i am glad he is showing interest in his surroundings. I am not sure if therapies are helping or i staying with him, but for sure in just last 2 months he has started to become a different child alltogether. I remember you saying in your earlier responses that even your child showed improvement within a month after you decided to work only on things where he was lacking. Thats what even i started doing at home. In the ATEC scoring he was around 25, 2 months back and now its around 15. There were simple things like teaching him to dress up, stopping his repetitive behaviors which we worked on and all of a sudden his other behaviors started improving. My son had this habit of doing a headstand everytime he would find a couch/sofa or when he had nothing to do. I was always thinking maybe he had autism and hence he was doing this because he had sensory issues and maybe there was nothing i could do. After reading your responses, i thought maybe like you said its just a behavioral problem and lets try to fix it. One day i looked straight into his eyes and told him that if he keeps doing headstand his head is going to hurt real real bad. Thats it!!! He stopped it altogether. Since he was doing it for more than 6 months, he still had a tendency to do it, but after my warning, evrytime he would do it, within 5 seconds he used to stop it, come to me and say, if i do head stand my head is going to hurt. Thats the end of his repetitive behavior of doing head stand. Now i realise that putting a tag on a child like autism can be so bad for the child sometimes. Like you said most of the kids with mild symptoms of autism will relearn and adapt to the surroundings. Though i want to continue the therapy, the aba teacher tells me my son doesnt need more than a month of aba. He should do good in school without it. But i will try talking to her once again. Can i ask you one more thing? My son loves mixie. He enjoys playing with it. He pretends he is making dosa batter, chutneys etc and enacts putting rice, water etc. Even when we go to a juice shop he cant take his eyes out of it. But thankfully he doesnt cry if we take it away or sleeps/carries with him all the time. Its just that he loves it. Does this count to be a unusual attachment to things which some autistic kids have? Should i hide/stop giving him to play with mixie? Was there any attachment your child had which still continues or has stopped? Secondly, my son needs lot of improvement in his social skills like responding when people talk to him. He sometimes completely ignores even when his dad is talking to him if he is busy with something. But he responds to me 90% of the time. His eye contact, response to name etc is the best when it is with me. With others its like around 50%. Is there anything i can do at home to get this better? Any suggestions? Thanks in advance Ÿ˜Š
 

anupama123 2017-05-23 11:46:23

 

I dont know why line breaks disappear!!
 

Ash1122 2017-05-27 02:53:15

 

Dear Anupama123,

Good to see your reply.

It really a soothing to know that the kid is improving. He is developing and growing every day. I just want to say that Well done MOM. No therapist can replace a MOM who is willing and is in charge. MOM is not a word its UNIVERSE. 

Request you one thing that please now don€™t waste your time in ATEC scoring. Its purely a waste of time and efforts.

Also at this juncture dont leave his ABA classes. This will keep the kid in observant eyes. It will cost in monetary terms but bear it. ABA therapy and procedure will provide him the required confidence to face challenges in school life.

One thing is clear from your email that your kid has accepted you as the mentor parent. You are now the real GOD/Friend/Lead Buddy for him. He will do whatever you say and now will start questing you a lot. You have reached this position so early. But in any case don€™t leave him of his own. Always be in his company. Ensure that he always feels that he has a force behind him as you. He will WIN all battles. This is crucial time. You are his confidence, his belief, his strength. Same has happened in my case. My wife is the leading parent and I am his enjoying buddy (the friend-who makes him do whatever he want/enjoyment partner, partner in every crime) parent. He is comfortable with me but adores his mother. She is rigid many times and gets the work done. I already said above what a MOM can do!

Now one question connecting to the same. (This is in fact your second question) Please check that his Dad has earlier was busy in work/Laptop/Mobile/TV etc when he has come to him earlier. I suppose that the kid is reciprocating. It happens. Like Newtons third Law of action and reaction. He require time. He is doing a lot in less time and require attention. Pay attention at every step. Let him be confident. Always reply to his emotional and verbal needs. The kid will bloom.

Secondary his affection to Mixie is obvious. It€™s the affinity with the moving or sound making objects. Observe and tell wither he is able to hear loud music or high pitch sound.

Don€™t remove any thing. Don€™t change his world rather than make him adopt the real world. He will learn if you change his focus when he is very involved. Try it. You will succeeded.  He has to overcome his affection/sensory issues (as said by qualified people) by using the same object not by avoiding them. Find a way to divert his attention from it. He is doing role playing and imitation. Its very good. Involve him. Every time you use mixie ask him to help. Make him a part of work. We have also involved our kid in lots of cooking activity. And the results are wonderful. Today he can teach a regular Bachelor how to prepare a dal and how to do a TADKA.  This also made him acquainted with a lot of things.

These attachments will go and keep shifting. Keep the kid involve and never stop talking to him.

Just for your knowledge Justin Bieber came to India with his washing machine. He tours the world with his particular washing machine. No doctor comments on it. Please give some time and talking to the kid and all will become OK.

Your kid has shown remarkable results in very less time. But in any case don€™t loose your grip. Be a vigilant parent. At least till his early school days. 

PS Please also read thread Travelling is the best therapy written by Panna. She talks about university of LIFE. Real life situations and overcoming it. Great efforts by her. 

Regards,

 

 

anupama123 2017-05-28 18:33:06

 

Thanks for the reply Ash1122. Your responses always make me think and reorganize my thoughts. The reason why i refer ATEC is, being a parent unlike doctor/therapists i do not know where my child lags behind when compared to neurotypical child apart from speech. Atleast it gives me what all aspects i can focus on. Also i have read that if the child scores less than 9, that means the child has recovered or atleast like most NT child. I am not sure why you think its a waste of time and efforts. Please let me know so that i can focus on the right things. As you rightly pointed out, my husband wasnt initially very involved with our child. Now he is making sincere efforts. I am glad to see the way you and your wife work like a team and the way you are approaching parenting. No wonder it has brought great results in your case. I understand why you insist on continuing Aba. I totally want to continue it as well. Can you please tell me how do you know when to stop aba? Is your child still continuing it? I know it can only do good but there has to be a time i hope when you feel that the child can do without it. How do you know that? Lastly i am 2 weeks away from my appointment with Dr Deepak Gupta. I understand what you said in your earlier mails, but dont you think there could be a possibility that our children could be behaving the way they are because of some allergies or defieciencies. I have heard lot of parents benefitting from it. How come you never gave biomed a chance? Thanks for all the suggestions and insights on all the questions i ask. I cant tell you how helpful you have been to us.i read the post you had suggested of Panna. She is so damn right on how travelling in local buses can itself be a good therapy.
 

anupama123 2017-05-28 19:33:50

 

I forgot to add thank you for your compliments on my efforts for my child. You are right. MOM's have the ability to do anything for their child. Congratulations to you and your wife too.I am trying whatever i can do and am trying to keep a close watch on him all the time. The best thing which has happened with my child is that he really values my orders, appreciations and demands. Its nice to know how your child has great knowledge on cooking. I can see my son following the same footsetps. He is constantly asking me the names of different grocery items in the kitchen :)
 

Ash1122 2017-06-04 07:58:45

 

Dear Anupama123,

I understand your views a parent on ATEC (whatever to check). But its done thing. Today we know what needs to be done. You are handling the kid dayin-dayout. Just focus on the correction path. Also its never a short journey. Its not like some fever that we measure and prescribe the medicine. Now when we know that there is attention and stimuli is required for behaviour modification. That is all. Also why the score is important. Just to satisfy us mentally that the kid is out of ASD or whatever. Then we have to understand the definition of ASD/Autism again. Generally ASD or other NT conditions are not changed in months. And if the pattern of change is fast as months then probably misdiagnosis is there. Then whats the need for ATEC points. So be patience and just work with the kid.

ABA is good for a kid who is either diagnosed or misdiagnosed with ASD. In either case the kid will improve. For a misdiagnosed one it will be something like a attention via careful therapists. While for ASD labelled kids it€™s the only corrective hope.  Continue ABA and you will yourself understand when to stop it. But don€™t be in hurry. My kid is still going for ABA and we feel to continue it for some more time. But the kid also goes to Montessori system school or pre-school.

We took a call to not put my kid in a senior school this year. Rather he is continuously going to pre-school system. His doctor and therapist have given an option that we can go for a formal school but we decided to continue with current setup where he is more focused on his speech part. Bigger school wont help us and we cant put that much pressure on school. Here we make a point to everyday interact with teachers about what new he has done or the teachers have tried. To a small school we can put pressure on school management to involve our kid in all social or group activities.

Now your question on some specialist Doctors curing ASD/Autism. A tricky and difficult one.  But I will try to put forward my thoughts.  

It again starts with our encounter with our kids diagnosis (or mis-diagnosis) with ASD. When I come to know about it my kids state/condition I also panicked like all parents do. But believed in second and third opinion, read more about it (not only on internet), visited institutions to interact with therapists.  I learned and later expended more. You know that there are various system of medicine in India. These major system of medicine are as Allopathic (Morden), Ayurvedic, Unani, Siddha, Sowa-Rigpa (Tibetan), Homeopathy and Yoga and Naturopathy. Met with all specialists with intention to find out that my kid has some undiscoverable or shortcoming which the Morden System of Medicine doctors (Paediatrician, developmental Paediatrician  , Neurologist, Paediatric Neurologist, Psychiatrist , Psychologist, Eye Specialist, E&T Specialist, Gastroenterologist, Occupational Therapist, Physiotherapist, Special Educator, Speech Therapist) were unable to find.   Please also add Toxicologists as you mentioned about the suspect chemicals present in ASD kids body needs to be discovered to cure it. At this point just a question, we still have DDT present in our food chain. Has it effected or not. Or what about polluted drinking water. Just think but lets not deviate from the original question.  

Out of the all of the specialist mentioned above, at a basic level if there is something (chemical or toxins) then the Paediatrician or developmental Paediatrician can generally get the symptoms. They study the same in MD course. If you do not believe then please check the course structure and contents for MD Paediatrics.

Apart from this if the Kids show specific symptoms in case they have any problems with food materials. Also the basic allergy tests advised by normal paediatrician also rule out or check the same. This is often seen in cases with kids who have allergy with food items and there hormonal levels got imbalanced due to it and thus they got diagnosed as ASD. They are generally corrected via medications and changed food.

So all these are clear cut established facts via a system of medicine.

But when it is told that there are specialist doctors who find out something in an ASD/Autism/PDD NOS kids which other equivalent qualified doctor cant then we have to talk to Noble Price Committee. They are Noble Price material. Even the doctors batch mates and professors can€™t understand his calibre. WOW. Just check the website of the concern doctor and you find a price tag for every activity he does.

Generally the medicines prescribed are something which are there for some months and then changed. And this process goes on. There are a lots of cases where these doctors are ineffective. I am based at Delhi and have met with kids parents who have taken treatment for years and didn€™t have an iota of benefit. I have seen the kids who didn€™t get any benefit even with many international specific medicine which is available with him only.

Please remember that the causes of Autism/ASD which are still a mystery. There are 3 basic tests (MRI Brain, BERA & EEG) which helps to point at something. But even in Morden System of Medicine the Neurologist asks for these tests and Psychiatrist/Psychologist rule out these. A contradiction.

So the answer is these doctors are like GODs for some they help and to some they don€™t.

But ABA, OT, Speech Therapy helps kids to develop by there own. So lets have a long but sure way. As far as my knowledge goes there is no medicine for ASD/Autism/PDD NOS. It is only treated by therapies. And if any kid get benefited by some medicine or doctor then just continue. Its what we are looking for. You must interact with the doctor. There is no harm in getting some advice.

Regards,

 

anupama123 2017-06-04 15:19:52

 

Thanks Ash1122. You suggestions and insights continue to help me. I agree to everything you say. My son is slowly becoming more and more NT, thanks to aba, my interaction and obviously suggestions from parents like you. I will continue aba for couple of months and see if he does well in the school. I will go ahead with dr deepak gupta and see what he says/suggests. Finally i will do what i feel is right for my child. Thanks. You have been of great help. All the best with your child.
 

abhishek300 2017-06-04 21:28:40

 

We tried ayurvedic medicine for my son and have seen improvements in him. He was not making eye contact he has now improved on it. He use to do toilet in his pants as he never realized it. He now walks to the toilet by his self.He is also learning to follow instructions and started speaking few word like O , S, B, P.His age his 4 . 1. We are giving in speech therapy however the progress is very less. However what I can say is that ayurvedic medicine showed quick improvements. We started giving him ayurvedic medicinewhen he was 3.10. Also I am searching on any test that shows he is really autistic and any other improvement method
 

tishta 2017-06-13 20:57:29

 

Hello abhishek, hi can you tell me from where are you talking medicines. ....which doctor? My son is just 3 and we have started homeopathic medicine for him. ...and also speech therapy. ....kindly reply. ...Regards Tishta
 

nirajAFather 2017-06-19 13:19:45

 

Dear Parents,

My 2 and half years son is diagnosed with  Autism few months back.

After that we spend lots of time in playing with him, took help of some ABA professional and found his eye contact has improved ( better than earlier) and he understand some context based instructions.

I want to know from any parents here, have you used Son-rise program from http://autismtreatmentcenter.org/.

If possible request you to  drop me an email, I would like to talk to you about your experience.  neeraj.ba@gmail.com

Please believe me, that would be a great help to us considering the situation we are currently going through. 

Thanks,
Niraj.



 

AIM1 2017-06-25 23:11:20

 

See some examples of a natural healing approach which works to fix root causes for most disease symptoms including ASD, Lyme etc. 

http://naturallhealing1.blogspot.com/p/autism.html
 

nirajAFather 2017-06-26 11:05:58

 

Hi,
We stay in Bangalore.  Did any parent from Banaglore done any food allergy tests for thier kid. I heard something about glutin. But haven't found any doctor/pathologist who can guide us for that.
Any pointer would highly help.
 Thanks,
Niraj.
 

flyingmamoth 2017-07-01 10:21:07

 

Here are few common threads and links which can be helpful, most helpful will be joining the Bangalore parents group in Wats app(Admin will verify to avoid spam), I have posted the threads to those posts with a hope it gonna help someone. Never join any centre until you had a discussion in the group or had a word with an expert. You can hear the real experience from the parents.

Most of the parents from Bangalore did food allergy tests for their kid to identify allergy tolerance towards a particular food. It costs around 15k to 25k depends upon the level. 80% who taking their kids for ABA therapy  tried and still trying glutin free diet as per the test result.

Join Wats app links

https://www.parentree.in/India/Autism/45132-whatsapp-group-bangalore

https://www.parentree.in/India/Autism/33124-whatts-up-group

https://www.parentree.in/India/Autism/32120-whatsapp-link

Like Facebook groups

https://www.facebook.com/groups/forumforautsim/ (Created by parents)

https://www.facebook.com/groups/421173791375890/

https://www.facebook.com/groups/965144890235758/

https://www.facebook.com/groups/1758594287766040/

Clear your doubts at 

https://www.autismspeaks.org/

http://www.bechange.in/blog/

 

bsd7 2017-07-03 19:24:40

 

Hi, 

I am from Bangalore, I would like to join the whatsapp group. Recently my 3 years old Son diagnosed with Autisim. I have studied lots of Internet articles, and getting confused and clueless. 

The link below to join whatsapp group is not working. Please help me to join the whatsapp group. 

Regards, 
 

fight 2017-07-06 12:12:30

 

Hi Ash1122 , U r doing a gr8 Job truly at a place and time when Kids suffering with such ailment are treated solely for minting money and misguided for song time Need Help ....Plzzzzz Living in Delhi .... 4 Yr Old with PDD NOS , SCD kind of Diagnosis ......we ve got TT from DD Lerning and also tried BMI with very Erratic result as they r truly money minded Business oriented Body now a Days . Kindly let us know a Good ABA specilist in Delhi NCR prefrBly Noida ......... Or Therapist who can judge and follow things properly .... Is thr any good centre in Delhi like Action for Autism ( Jasola Vihar ) / Children First of Amit Sen .... What r thr charges Can one get individual ABA consultation Any Good therapist or special Educator
 

Ash1122 2017-07-17 14:11:26

 

Dear Fight,

Sorry for late response. I missed this post. Seen it lately.

If you have gone to Dew Drops and BMI then possibilities are that very less therapist people/centres are left here in Delhi/NCR. In Dew Drops network there are certain centres where they have really good therapists. They are the largest business chain for special kids here in Delhi /NCR. I presume that you have visited Noida Centre.

But I feel that there are still some centres/persons where we can have some methodically planned system for kids (especially for ABA). This is purely my understanding or observation. I dont write names against or for here. Thats my personal opinion. But surely there are some therapist who are working sincerely. We are already connected here, drop me a message and we can discuss the required.

Regards,

 

flyingmamoth 2017-07-17 16:12:11

 

 Those links are not I donthdirect connection for Wats app group, you have to request in the link, the admins will have a back ground check. I dont have any idea about the admin. 
 

abhishek300 2017-07-18 11:33:06

 

Hi Tishta,

We are going to Sameer Jamagadani doctor in Pune. You can find his videos on youtube also. You can email me at abhishek_300@yahoo.co.in if you need any further details.
 

flyingmamoth 2017-07-19 09:31:37

 

Its hard to belive people who says "Autism Cured with this or that". Never believe all those things. No one gona spoon feed you. You have to do hard work, go meet parents, join groups, ask questions to parents........not 1 or 2 min 10. They will help you. Never belive marketing people promoting some docter or center.

 

sudlp26 2017-09-07 18:44:16

 

Hi  raunak24, I read about your success, Pls give me your contact no .I want to know about Dr KANAKALATHA .
Pls.
 

0909hanoc 2017-10-16 12:40:57

 

We r working on autism adha OCD and other communication disorders  plz feel free to contact 9160437137
 

 

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