Dealing with the ‘child’ within
WHEN you go to the hospital, priority is usually given to the elderly, those with special needs, and the wheelchairbound. However, being in a wheelchair alone doesn’t make you special nor does it put you on the fast track to being treated quickly. Nearly half the people at the hospital are either elderly, or in a wheelchair, or both.
Did you know that when you go to see the doctor, a file will be opened in your name and, after several visits, there’d be a mark on it that only the doctor and hospital staff would know how you’ve been rated?
Just by looking at the cover of your file, the medical staff would have categorised you already.
For example, my son Omar is a young man who’s both physically and mentally challenged. He also uses a wheelchair, especially when he has many places to go. There’s a red star at the corner of his file which marks him as being potentially aggressive and violent. So most of the time, he would be the first patient to be seen and processed.
If you know Omar the way I do (and this is said with the loving biased view of a mother) or as well as his teachers and therapists do, you will realise that Omar is generally a happy and loving person. He’s a strapping young man who behaves like a 10-year-old, sometimes even younger. Such people are uncomplicated emotionally, so you don’t need to second-guess them.
Like many happy children, Omar responds to sights and sounds without inhibition. Most of all, he loves an audience. Shushing him to be quiet will only tickle him into bellowing out loud gleeful laughter. Because he is non-verbal, he’ll respond with various sounds from humming, whistling, and laughing, to shouting or shrieking. Sometimes when he’s happy or excited, he has only one volume — loud.
When he acts up at the hospital waiting room, he’ll also look for other people’s reactions. It could be anything from grabbing a passerby’s hand, barking at the person sitting next to him or just sliding off the wheelchair and refusing to be coaxed back into it.
The more attention he receives from people around him, such as assistance from hospital attendants, the more he will act up. He will laugh out loud thinking it is all a game. What he doesn’t realise is that he is bigger, heavier and stronger than the average person. One shove from him can send you “flying”.
As for receiving, understanding and following instructions, he has his days. Some days he’s very cooperative, other days he’s just impossible. One of the setbacks when dealing with people like Omar is that he’s often labelled as “difficult”.
This can be to his detriment because you can’t help him improve his condition or prevent it from getting worse. You’re limited in the help you can muster for him.
WORKING WITH LIMITATIONS
Going to the dentist for regular maintenance of filling up cavities and polishing his teeth takes months to arrange simply because he has to go under general anaesthesia. He doesn’t just sit there while people put things in his mouth or when the dentist switches on his drill!
Another challenge for Omar is physiotherapy. Stretching a contracted or spastic muscle is painful. If you’ve ever gone for physiotherapy, you may have been asked to work with the therapist and bear the pain as the muscles are stretched and limbs/ joints manipulated.
Omar refuses to have any of that. He doesn’t tolerate pain. You can’t persuade him to bear with it. He doesn’t understand that it’s for his own good. He’ll push you away and curl up, making it impossible for the therapist to continue.
At the recent orthopaedic assessment for his clubfoot, the specialist said the operation to release tightness in his foot could be done.
However, since he is noncompliant about post-surgery therapy, it would be pointless to pursue. The entire exercise would be futile because the problem would not be corrected.
Not getting his clubfoot corrected means that he will be walking with a limp. It also means that his spinal alignment will be affected and will soon lead to aches and pains that he would not be able to express. In years to come, his foot would hurt so much that he may not be able to walk at all. Being bedridden would be one of the worst things that could happen to him.
Omar swims twice a week and enjoys outdoor activities. We’ve managed to keep his weight in check. Obesity would be a problem as he gets older and less active. The medications he’s on increase his appetite. We try to bulk up on vegetables to keep him feeling full.
Every visit to various doctors is about finding and keeping that balance so that he stays well and healthy while working within the limitations of what he can bear. Since he can’t say much, we’ll just have to guess how far we can go with him.