In India, child therapy takes place behind closed doors without any parental supervision or social regulation. Are we wating for something untoward to happen to these vulnerable kids, asks outraged mother Preetha Anoop and psychologist and special educator Seema Lal.
A mother Preetha Anoop shares
March 23, 2015 - a day I cannot forget! After being up all night attending to my two-year-old who was down with a bad cold, I took my little one to the hospital. My husband was taking my older son, who has autism, to his occupational therapy (OT) session. Relieved that I had one less thing to do, I zoomed in my car with my little one who was coughing all the way to the hospital.
While waiting for our turn, my husband called on my mobile and inquired if we were done with the appointment. I told him we were next in turn and he immediately told me to wait there and said he was coming over.
There were so many things running through my mind that it never occurred to me to ask him why he was coming to the hospital when he should have picked my son from his OT session and gone to work after dropping him off at school. A few minutes later, I saw my husband walking towards me and my eyes were wandering in all possible directions searching for my older son who was going to accompany him. Because my older son has trouble communicating, I have always dreaded the thought of losing him in a crowd.
My husband asked me if we were done and I remember brushing that question aside and asking him repeatedly where our son was. My heart raced as he informed me that he had been admitted in Casualty. "What??? Oh my God!!! Accident?” I asked him as I swallowed a huge lump in my throat.
"No" he answered, "He fractured his hand during his therapy." I ran to the casualty and saw my son lying in the bed asleep. The doctor said that he had given him a painkiller as he was crying out of pain. At that point my heart broke into a million pieces. I have hardly seen my son expressing pain as reduced pain sensitivity is a common feature of children with autism. The pain would have been excruciating and above normal thresholds for him to actually feel it and express it.
Those who know my son would describe him as a strong 5-year-old who is quite tall for his age. The doctors were questioning us about what happened but neither my husband nor the therapist who had accompanied them to the hospital could give an answer. Shortly after, the doctor informed us that the X-ray results indicated that the forearm of his left hand was broken into two pieces and told us to probe the situation and find out exactly how this has happened. He then told us that my son needed immediate surgery.
My hands were trembling in fear as I called my father for help. I interrogated the therapist who stood there like an accused being. He mumbled something about how he had only applied little pressure and that he is shocked about what has happened. He seemed nervous. I could clearly see that he was not telling me the entire story.
I explained to the doctor in detail about my son’s condition and I told him I needed time to prepare him for the surgery. He understood me and I entered the pre-operation ward to be with my son who was awake and hungry. I put my arms around him and told him calmly that he had to be patient. When I say this, many readers won't understand unless they have an autistic child. Autistic children cannot understand anything unless it's communicated by someone who has won their trust. They have communication impairment and cannot comprehend easily. I assured my son that soon after the operation, I would buy him his favourite biscuits. He was taken to the operation theatre. I remember seeing my son's anxious face looking all around, confused and anxious.
Thankfully the operation went smoothly and he was brought back to the room. The doctor informed us that he had to wear a cast for 5 weeks. I remember wondering how I was going to handle him those 5 weeks. Those 35 days taught me new lessons for life. The sleepless nights continued with one sick toddler and another 5-year-old in severe pain.
As if this was not enough, he also had severe itching all over his body. Super sensitive skin and itching is again another challenge that autistic kids encounter on a daily basis. Cetaphil moisturiser and body wash gives him some relief from time to time but even that could not be used because of the cast on his hands. We watched our baby suffer. As for my husband and I, it was the most painful period of our lives.
The cast was finally removed. But the doctors said it would take another 3 months for full healing to happen. Our son has mild ADHD and autism. Another handicap would be too much for him to handle.
Why I filed a Child safety petition - By Seema Lal
Having passionately and actively worked in the field of Disability/Mental health for close to 15 years and worked with NGOs, Clinics and Schools; I am now more than convinced that Parent Partnership is the key to bringing out the best in any child. Anyone other than the Parent (meaning the one who is raising the child) is a facilitator.
Being silent/neutral in the wake of injustice is as good as being supportive of the one indulging in injustice - This lesson has been ingrained well by my family, teachers, all my mentors at every institution I worked with and currently working with.
Hence there was no second thought while filing the first petition to #The_State_Commission_for_Protection_of_Child_Rights highlighting the urgent need to take action towards ensuring safe, ethical, transparent & accountable therapy practices for children with disabilities. This was given in the wake of several cases of abuse & injury reported by parents while the child undergoes therapy behind closed doors in therapy centers with so called trained adult therapists. As if this was not scary enough the parents who wait outside hoping against hope is neither given the real picture nor explained the details of therapy in writing. Documentation was negligible or nil in most cases.
The second petition was filed to #The_Child_Welfare_Committee , the 3rd to #The_Collector_Ernakulam_District ,& 4th to #The_Minister_of_Social_Justice_Kerala_State.
7 months later...
7 months, much proactive stakeholder engagement and multiple petitions after the March 23rd incident (read bit.ly/MyHeartBroke), therapy centres still
- Conduct therapy with a vulnerable child alone behind closed doors. No supervision!
- Ban parental presence, yet don't provide viewing windows or CCTV instead
- Discourage parental involvement and learning, provide no holistic treatment plan
- Remain unanswerable and unregulated under law, with no self-regulation either
My ridiculous conversation with a Child Protection Officer
Finally on inquiry with the District Child Protection Officer for an update, she says (translated to English for ease of typing)
"Madam, we did visit all the centres you mentioned in the city, nothing is wrong anywhere."
Huh? Really? Wow! So you mean to say parents are being trained now, they sit inside during sessions and there is good documentation?
"No, Madam, nothing of that sort but all the therapists have explained to the parents why they should be sitting outside and the parents have understood. They have no complaints. So what can we do? We can take action only if parent complains.”
WHAT???!
Dear Child Protection Officer (if I must call you so)
You mean to say you as an authorised entity of the District are WAITING for something untoward to happen to children who cannot speak for themselves... and then further WAIT for it to get reported by parents who are clueless of what to do or where to go?
We wouldn't leave any child without supervision behind closed doors with any adult for 45 minutes!! And here we pay for it in the name of "Therapy" which is not documented and you Ms. District Child Protector tell me that you will WAIT!!! Duh!!!
What an abuse of authority.
I tried the peaceful means but well now I think I understand why people turn to activism!”
This is abuse
- of trust.
- of power,
- of professional authority
- and crucially... of vulnerable children who have difficulty communicating
If you agree, please support the petition https://www.change.org/p/minister-for-social-justice-kerala-state-parent-partnership-key-to-success-of-therapy-for-children-with-disabilities-togetherwecan
Seema Lal is a Psychologist and Special Educator, who is currently working as School Counsellor with a mainstream school in Kochi, India. She also conducts parent training sessions at home for parents of children with Autism and other neurological differences.
