Kochi: Parents of autistic kids on a campaign mode

13 June 2017

Sudha Nambudiri

KOCHI: Frustrated because of their failure to draw attention of authorities to the sorry state of affairs at therapy centres, parents of autistic children have started using social media videos to tell their stories. These parents want to be with the children during the speech, behaviour and occupational therapy so that they can help them.

Roshni and Sandeep Kumar moved back to Dubai from Kochi after the autism therapy centres failed them. Of their two children, their younger is autistic. “We were in Dubai but decided to come to Kochi because there were good therapy centres. We didn't have much knowledge on how to deal with an autistic child. We would sit outside while our child would be in with the therapist. I did not know what happened inside but realised that it is not making any difference.So we came back to Dubai. Here the centres insist that the parent should be with the child for the first one year because the sessions are called Parent and Child Training (PACT).Now my child has progressed and he has become fairly self-sufficient,“ they said through a post on the Facebook page Together We Can.

Anita Pradeep speaks of parental role and the changes it made in her son Brian with whom she spent time in the therapy centres outside the state.

“It is very sad to hear about the closed door therapy sessions here.More than safety issues, parents need training. We need transparency and a regulatory body to oversee what is happening at these centres.“

The videos have gained popularity after the incident at the Palarivattom Daycare centre where tales of abuse of special children also came out. Preetha Anoop Menon in her video talks of how her son. “We couldn't manage him and there was no improvement too though I sat every day in front of the centre while my son was inside. One day we heard a cry during a session.When we rushed in, we saw that his arm was broken. From then on I have insisted on being with him and it has made a difference,“ she says in the video.

Seema Lal, psychologist and coordinator of an informal parents group Together We Can, says that they have been trying for a year to get authorities to listen to them.“We realised that something needs to be done to make the society understand the problems of autistic children. We filed a public interest litigation in this regard recently ,“ she said. Biju Isaac of Autism Club in his video says that sessions in which parents are forced to sit outside are not helping. “If we ask them what was done inside, they don't say because they are poor communicators. Closed door sessions are happening because therapists are not confident about doing it right,“ says Biju.

Fathima, another parent says in a video that it is very important to have early progress. “We are not against therapy centres but without a regulatory body, this is the only way to raise the voice for our own children,“ she said.
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timesofindia.indiatimes.com/city/kochi/kochi-parents-of-autistic-kids-on-a-campaign-mode/articleshow/59117971.cms

Parents of special children open up on therapy centres

21-May-2015

Sudha Nambudiri

KOCHI : Emboldened by the district collector's decision to take action against illegal therapy centres for special children, parents have started posting horror stories of their personal experience on the 'Together We Can' Facebook page.

Parents, who were earlier scared to divulge any details, have started discussing issues and experiences on the page.

Writes Padma Pillai on her visit to a therapy centre along with other parents: "Run by an Occupational Therapist man and a lady who has previous experience, the OT man also claims he has found a cure for autism using acupuncture (without needles!). He started off by saying, they do allow parents inside and keep the door of the therapy room always open (ha!!) and that parents are welcome to walk in any time. The first 3 months they don't allow parents because that is the time for the therapist to get to know the child!"

Another parent Preetha Anoop writes about her son who fractured his hand during occupational therapy: "I saw him lying unconscious and doctor explained about the pain killer that he had administered as he was crying out of pain. I have hardly seen him expressing pain as reduced pain sensitivity is a common feature of children with Autism. The pain should have been excruciating and above normal thresholds for him to actually feel it and express it.

"Shortly after, the doctor informed us that the X-ray results indicated that his hands were broken into two pieces. He asked us to probe into the situation and find out exactly how this has happened. He advised us immediate surgery. Autistic children cannot understand anything unless it's being communicated by someone who have won their trust. They have communication impairment and cannot comprehend easily. When we asked the therapist, he fumbled something about how he only applied little pressure..."

http://timesofindia.indiatimes.com/city/kochi/Parents-of-special-children-open-up-on-therapy-centres/articleshow/47369839.cms

QUESTIONNAIRE : Safe and healthy therapy practices

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

Dear Parent,

In the wake of far too many episodes of unhealthy practices within several (not all) private run therapy centers for children with special needs in Kochi, a couple of frustrated parents/professionals & other like-minded individuals started a group called “Together We Can”. The objective of this group is to initiate a campaign in the City (Kochi) & soon state-wide & nationwide towards creating more awareness about rights & duties of -:

1. Children diagnosed with specific disabilities needing therapeutic intervention

2. Parents of children with diagnosed disabilities taking therapeutic services in private centers

3. Professionals working in the field

4. General Public

Phase# 1 of the campaign focussed on spreading awareness about the rights of Parents of children taken to Early Intervention programs to private centres & whose children are not in a position to communicate on their own what happens during the therapy sessions. By spreading this campaign by word of mouth, social media and all other feasible methods we hope to raise the interest of the public and other stakeholders in this matter.

We also advocate the setting up of a qualified external agency that comprises all the stakeholders to monitor such private therapy centres.

Phase #2 of the campaign would entail the parents to fill in the below questionnaire. This would then be tabulated to identify the extent of rights violation. The finding would then be sent to the State Human Rights Commission. Please read though the entire questionnaire before starting to fill.

Consent and Willingness to participate in this Campaign: Circle you option from 1 or 2

1. I do support the objective of #KOCHI_togetherwecan campaign and agree that rights of parents must be safeguarded. I am willing to fill share and fill in all my personal experiences and reveal mine and my child’s identity as I understand it is for the larger good and my support is significant.
2. I do support the objective of #KOCHI_togetherwecan campaign and agree that such rights of parents must be safeguarded. However I am willing to share only a few personal details and experiences because I fear it will affect the future of my child as I still feel very dependent on therapist for helping my child become independent. I fear my sharing my honest experiences with therapy centres will jeopardize my child seeking their help.

Name and address : ______________________________________________________________________________________

Age and Diagnosis of your Child: ___________________________________________________________________________

Number of years/months you have been seeking therapeutic help for my child: _______________

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

1. Have you been a participant of the one to one session between the therapist & your child at the Center. If not,  were you able to monitor what was ongoing during session through a cctv or one way screen -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

2. Have you been explained what to expect realistically -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

3. Have you been involved while formulating the IEP & made aware of progress. - : Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

4. Have you been explained what is being taught, why and how, elaborating on the goals & methods being used-: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

5. Have you been recognized as a resource person being serviced & has the centre initiated coordinated efforts with other centers/therapists with who your child undergoes therapy. -:  Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

6. Have you been trained to handle a home program -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

7. To be shown the specific written plan for the 45 minute to one hour session that is given -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

8. Has your child been always handled by trained professionals & not by any other untrained staff in the center-: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

9. Has the centre shown in writing their best practice policies :- Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

10. Have you ever been denied or threatened to be denied further therapy services if the parent questions when any of the above rights are violated. Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

THANK YOU SO MUCH FOR YOU PARTICIPATION ☺