I’ve been working with children with neurological disorders for over 23 years. Yet every single day I continue to be surprised by how little we know about children who are labelled as “disabled.” We (therapists), with all post-graduate degrees and training on new techniques and treatment approaches, a lot of times still find it hard to figure out how best to work with our young patients and, as a consequence, fail to make significant progress even after years of therapy.
So what is going on?
I think a key issue is that many therapists, and medical community alike, take a standard / template approach to children with neurological disorders. We, in a lot of cases, don’t take the time to really get to know each child’s personality, level of perception and ability to process information, and just at the end to look at his disorder.
There’s also a tendency amongst therapists and medical profession to put “all eggs in one basket” and attribute everything the child does or doesn’t do to his or her disorder. In most cases, this is done with good intentions since the therapist is merely trying to “alleviate stress” from the kid, who is viewed as “suffering already.” So a child’s aggressive behaviour is often excused because of the disorder, or blamed on the disorder. At the same time, the therapist structures treatment not as a time for learning but as a time for playing – again because of a desire to lessen the child’s stress.
These approaches simply do not work. The question is: what stance and approaches will work?
First of all, I’d like to say that parents and therapists aren’t doing the kids any favours by trying to always spare their feelings and alleviate their stress. Therapy is work, so why not let the child know that’s what they’re coming in for instead of making them believe they’re coming in to play? Do we hide from a “regular” child the fact that he or she is going to see the doctor or the dentist? No, we don’t. So why go through this deception with a child who has a disorder? Although games are often part of therapy, therapy is simply not play. It’s a learning process and game is a function in which learned skill is integrated.
The more we hide from the child, the less connection and trust we build with the child. This applies to all aspects of life, not just therapy.
My approach to children with ANY neurological disorder is to treat them as “regular” children who happen to have a certain disorder. And my job is help them become independent in EVERY aspect of their lives.
I want to share with you the story of Helena and Alex, who came to our clinic from Poland. Alex, who is three years old, has Down’s syndrome. We started to work. The next day Helena came to the clinic, and told me: “Alex was fighting with you. I think the treatment was powerful for him. Please do not push him.” I changed the way of the treatment right away. I started to give instructions to Helena, and SHE started to work with Alex. In a few minutes, Alex started to cry. Then he tried refusing to follow his mother’s commands and requests.
“He is trying to fight you. Just explain to him what to do and why it needs to be done, and continue” I said to Helena. She agreed.
Was my treatment on the first day of treatment pushy? I don’t think so. I am always respectful and careful with every child. But it was his first day and he was in a completely unfamiliar environment. He did not know what to expect. In addition, I asked him to do things which I NEEDED HIM TO DO, and not what he wanted to do. Of course he was showing his displeasure. I was really happy when next day Helena walked in the clinic and said: “I do not know what you did, but he is so much better!” She just made my day.
There is no just motor function without cognitive. I cannot teach Alex – or any child for that matter – motor function without explaining the purpose of the function. But I cannot explain anything to him unless he learns how to listen, perceive and process information. Violence, screaming and hysteria are a consequence of not being understood by others, and of an inability to do certain things which “others” can. All of these lead to frustration. Therefore my mantra is: respect, observe, explain, show and repeat. This will eventually lead to the child learning the function. Never let yourself to be sorry for your child. This is not what he is looking for. He is looking for understanding and for someone who will teach him how to be himself, and not somebody else. The same as any other “regular “child.