During a recent session with a young patient diagnosed with cerebral palsy, the child’s father paused in the middle of treatment and said in a half-joking manner: “Ok, time to take a break.”
The session had been going on for only 20 minutes and I knew that this parent was feeling distressed as he and his child went through the steps of the LIFE program, a concept I had created to enable children with neurological disorders to gain independent function. During this session, we were working on teaching my young patient how to sit up by himself, and to accomplish this I had broken down this function into a series of motions. After guiding and talking the child through the motions, the next step was to teach the parents the motions and verbal instructions so they could do the program at home and make it part of their child’s daily activities.
I won’t lie to you. The LIFE program isn’t easy, for either the child or the parents. For the child, it can be both challenging and frustrating as the body and mind learn to function in new ways. For parents, it can be heartbreaking as they watch their child struggle physically and mentally to accomplish each motion in the program. Being a parent myself, I understand this completely this and was not surprised when the father expressed a desire to take a break. I knew that he was not asking for a break for himself; he was asking on behalf of his child.
“Why don’t we do a couple more rounds and then we’ll take a quick break?” was my response to him. Then without waiting for an answer, I went ahead and started working again with my patient.
Why was I so tough? Why didn’t I just let my patient and his parents take a break right there and then?
The answer is simple: I believe that if we are to enable children with neurological disorders, then we need to help them develop the psychological as well as the physical means to function independently. This means teaching these children that if they want something, then they need to do it themselves. We will help and guide them, but we will not do it for them.
Please do not get me wrong. I don’t push my patients to do things they are not ready to do and each patient’s program starts with simple tasks before gradually building up to more complicated tasks. Also, we do take breaks during therapy once a patient has accomplished a particular function. But I won’t call for a break simply because a child is crying or screaming. This is the child’s way of protesting a sudden change of circumstances. Before therapy, the parents were doing everything for the child. So now, why won’t Mom and Dad just sit him up instead of expecting him to sit up by himself?
Changing this kind of thinking is critical to successful treatment. When a child’s mobility is impaired, the ability to discover the world independently becomes lost or reduced, leading to mental deterioration. This combination of impaired mobility and mental deterioration then causes a deficit in function. As an example, imagine being in bed for an extended period, doing absolutely nothing, not even watching TV or reading a magazine. After just a week of this existence, with no stimulation of any kind, your mind and body will start to deteriorate.
I know that there are different forms of neurological disorders and that some kids are more impaired than others. But regardless of the degree of impairment, every child has the chance to become independent when they exist in an environment where therapy is tightly integrated into their daily activities.
Now some of you parents out there may be thinking that there’s not enough time to do therapy at home everyday, especially when your child spends a good part of the day in childcare or in school. I understand and agree that we all have busy schedules. But remember that as parents, you have a critical role to play in helping your child become independent. And the earlier you play this role actively, the higher the chances that your child will gain independence as an adult.
Just as important as taking the time to do therapy with your child is your determination to be strong through your child’s therapy. Remember this slogan: No Excuses and No Pity. Make this your philosophy as you teach your child to become independent in every aspect of life: physical, functional and social. It won’t be easy, but it’s the best thing you can do for your child.