Child therapy, specially for those who have neurological issues, without parental supervision can often lead to more damage than help, Seema Lal, child rights activist at TogetherWeCan shares the best approach to empowering parents to ensure the best for the child.
I was watching an interview of a renowned person talking about all the therapies their centre offers. Starting with speech therapy, occupational therapy, special education, behavioural therapy, music therapy, art therapy, dance therapy, drama therapy, play therapy, pet therapy, lego therapy, movement therapy they went on and on and I was tempted to say “Excuse me, would you like some Water?” and voila! water therapy was added to the list followed by mud therapy and after taking a moment to breathe, breathing therapy! Seriously? I mean, really?
There is a high demand for anything and everything that is suffixed with the word “Therapy”. They come in beautiful packages at an exorbitantly high price to a family in terms of money, time and energy. Yes, lets face it. It is indeed economics.
Functional Independence is an important goal post that the community cannot lose sight of. A person is said to be functionally independent when their impairments - neurological or otherwise - do not come in the way of them performing any skill or activity of daily living and eventually making them productive members of the community without having to be dependent on other people. To put it in simple words, being able to lead a healthy, happy and safe life that is not based on dependence on others, but being self-reliant or being mutually interdependent. And that is one basic goal any parent would want for their child.
So let’s get SMARTER! Whether we are parenting children who are neurotypically developing or otherwise, we should have by now realised that we know our children the best. Those of us parenting children with neurodiversities have sure come across the term SMART goals. We are all aware of how goals should be Specific, Measurable, Attainable, Relevant and Time Bound. Well, the job of setting these goals is on the professionals but they will not be able to do so without constant, consistent and honest feedback from parents.
So here is a sneak peek on what how one can choose a SMART Professional and how one can be a SMARTER Parent.
SMART Professionals
- S : Seeks your Support in setting the programme for your child. Includes you in the programme as the Team Leader while they play the role of the facilitator
- M : Measures progress in your child periodically and revises the programme accordingly
- A : Accountable and Answerable to any question that you might have about your child or the programme and will be able to convince you with answers. Helps with you with your home routine too and is not just concerned with how the child performs in the clinical setting
- R : Respects you and your child at all times as an equal partner in the programme. They are aware that it is your right to know what happens during therapy.
- T :Transfers skills to you and ensures you become an empowered parent and their role in your family becomes progressively unnecessary. Takes into consideration your family commitments, your energy and time and sets a home programme that you can manage.
SMARTER Parents
- S : Set their priorities right – They keep communication as their top priority. It does not matter how their child communicates (speech, sign, pictures or any other). But they themselves are keen to work towards understanding their unique child better so as to make them as functionally independent as feasible with the help of the professionals. They are not overburdened with thoughts of making their child somehow fit into a neurotypical world. They have learnt that acceptance is the key.
- M : Make sure they are included during the therapy session and are not kept waiting outside guessing what is going on inside with their child
- A : Ask questions till they get clarity on the goals and also the home programme
- R : Read a lot and keeps learning from anyone and everyone and is up to date. They share information and learn from other parents. R is also for finding time to Relax as part of their daily Routine.
- T : Take responsibility of the home programme given and will be consistent in follow up too. Will also take responsibility of giving prompt feedback to the professionals if any method is not working in the way it is expected to work.
- E : Expect progress and never give up hope; know when to let go and when to hang on. ‘E’ is also for their understanding that it is not going to be Easy but it is going to be worth it
- R : Rights based approach and attitude is maintained. They are aware that it is their right to be included in therapy. They know that their child has a right to a dignified life, a right to safety and education and all other rights that any child has. In the face of any discrimination they will raise their voice and be the voice for their child and not step back until justice is served.
In Kochi, Kerala, TogetherWeCan a forum of parents of children with neurological differences have filed a public interest litigation with Kerala High Court on May 2nd 2017 to bring about a regulation for therapy centres so as to ensure SMART functioning of services for children who cannot speak for themselves. Remember that TogetherWeCan opens doors to a safer future.
TogetherWe Can or TWC is an advocacy movement initiated by a group of parents of children with Autism and other neurological disabilities together with like-minded individuals from varying fields such as special educators, psychologists, human rights activists, journalists, teachers and others. The prime objective of the group is to ensure justice to the most vulnerable members of our society - children with disabilities. For this purpose empowering the parents and through them the extended family and local community was seen as utmost important and significantly lacking in our system. .
The whole idea behind this movement was not to leave any child with neurological and associated problems who are not equipped to fend for themselves without supervision behind closed doors with an adult for a period of about 45 minutes or so, because a parent who is paying for the therapy of the child behind closed doors is entitled to be a witness to the proceedings and the person conducting the therapy is answerable for anything untoward.
As Seema Lal, who filed a Child Safety Petition says, “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“.
For the case that started the TWC movement: When Therapy Harms Instead of Healing
