You can read all the books you want to, consultant with the brightest minds in psychiatry and clinical psychology and listen to dozens of lectures by experts but ultimately you as the prime caregiver will have to do help your child who has a mental disability to find something meaningful to do.
Why do I say this?
It’s because each person who has a mental disability is different, at a different level with the disease and responds differently to suggestion, to encouragement and to support.
You face two possible scenarios as a caregiver. One is where your child is diagnosed shortly after leaving school and the other where your child has completed their vocational or academic training and then schizophrenia or bipolar surfaces.
Now, let’s get one thing clear when the first episode strikes — the turmoil in your life and that of your child is going to be devastating and will take much time and pain to overcome emotional trauma until you reach a place where a new structure has emerged. In this new structure medication has to be taken to a specific, set routine, good behaviour needs to be encouraged and instilled and a support system needs to be put in place.
One thing that needs to be understood is that there are different levels of functioning. To make it simple, you get low functioning individuals, medium functioning individuals and high functioning individuals with disabilities. With low functioning people with disabilities may remain stuck in their illness and it could take years for them to reach a medium functioning level. Those who have been or are in this situation will know exactly what I mean.
With the medium functioning person with schizophrenia or bipolar, there is a chance that they may be able to do some work but you are going to have to set it up for them.
Why is work so important?
Well, even for a so-called “regular” or “normal” person — or let’s rather say someone free from mental disability, someone without a mental disorder to be medically correct — a working identity gives extraordinary meaning to individuals. You have to have lived with the hopelessness of someone with schizophrenia or bipolar to understand just how important a working identity really is.
With someone who has schizophrenia, you are going to face the challenge of lack of motivation. You have to fully accept this otherwise you will end up in a continual conflict situation. But when I say “lack of motivation” it mustn’t sound like an absolute.
Within your child, there is motivation but you have to use different approaches and methods to enable it to surface. Throw out your intellectual “skills” and “learning” because you are going to have to use your “emotional intelligence”.
Bringing out that motivation, you will need to act as a midwife using encouragement, compassion, self-esteem building approaches, praise and most importantly love. You will find that love accomplishes much. Love is the real tool or instrument that leads to eventual growth.
In another chapter we will look at how to take your child from ground zero to part-time or full-time vocation. It’s a long process. You will need patience. You will need to have long conversations with your child. You will find out what your child wants to do and then with the means and resources at your disposal make it possible. You will NEVER decide for your child what they ought to do. Why? Because it will all end in failure and tears. You will experiment. And fail. And begin again. And keep trying and trying until something just “clicks”.
The timeline for reaching even assisted employment could stretch over the years – so patience is critical. Believe me there are no shortcuts, no trickery, no magical recipes – something commonly sold in many areas these days – despite some people claiming clever and fast solutions.
For the higher-functioning individual with a mental disability full-time work is fully possible. Recovery from the first or second or more episodes and with adaptation to a new lifestyle can lead to readiness for full-time employment. Then one of the key issues becomes whether to disclose or not disclose that you have a mental illness. It’s tragic but the reality is that society, communities and workplaces have extreme prejudice against people suffering from mental disabilities. It will be up to the individual to disclose or not but in a later chapter, we can provide considerations to guide you or a person suffering from a mental illness.
The tragedy is that the visible disability is given more attention in our society and the invisible disability that of schizophrenia and bipolar is stigmatised, shunned and trivialised (especially in the media who make hurtful remarks in their utter ignorance about things being (“schizophrenic”). People with visible disabilities will more readily obtain employment, albeit difficult in some cases, but those with invisible disabilities face prejudice, ignorance or a couldn’t-care-less attitude.
The country has come a way from the time when people with mental disabilities were kept on Robben Island after being transferred there in 1836 from the overcrowded Somerset Hospital (formed in 1818) until the building of Valkenberg Hospital in 1892. Yes, some distance. But not enough. Not nearly enough. Especially when one considers how difficult it is to even obtain occupational therapy today at a facility like Tara Hospital (formed in 1946) in Johannesburg.