That cerebral palsy is not progressive

Indeed, the definition of cerebral palsy refers to brain lesions that will not spread during the child’s life. The damaged areas are fixed.

However, what will change are the consequences of growth on a spastic body… The bones grow while spasticity contracts the muscles (sometimes to the point of shortening them). It is easy to understand that this will cause deformities (equinus feet, knock knees, and sometimes even hip dislocations).

Progress made in childhood can therefore be undone in adolescence. So the consequences of the condition do indeed evolve.

It is not pleasant to read, but it is important to know, so that you can increase massages, stretching and physical exercise during growth spurts.

Not to do intensive rehabilitation

Neuro-paediatricians will tell you not to do intensive rehabilitation because:

• you will put too much pressure on your child if you become their therapist;
• your child will be sick of physiotherapy sessions by adolescence;
• you will wear yourself out.

Yes, but what if we do nothing? Do we let our child grow up with no hope of future independence?

Let’s not fool ourselves: our children do not progress on their own the way other little ones do. The logic is different. It is up to us to stimulate them to create new learning.

Here are two tips that seem essential to us for your child to feel good about themselves:

1/ Rehabilitation must be enjoyable, in all circumstances.

For a child to cope with daily rehabilitation, they must enjoy it. This is essential for building self-confidence. At 4, our daughter asks to do her exercises at home and loves going to see her physiotherapists. Here is what we put in place:

• We stopped seeing professionals who made our child cry, even if it was for her own good. Look for practitioners who manage to build a climate of trust with your child and respect their sensitivity.

• To manage 45 minutes of Medek exercises a day, we have a trick: we put on a cartoon or nursery rhymes during the session, whereas the rest of the time the TV is never on. That makes exercise time very motivating!

• And of course, you must listen to your child and know when to take a break on days when they are too tired.

2/ Do not talk about your child’s difficulties and your uphill battle to someone else in front of them.

It is not easy, but if you want to stop your child from feeling guilty or under too much pressure, you have to discipline yourself as often as possible. Save the conversation for a time when your child cannot hear you. As we all know, little ones are real sponges and pick up the negative emotions in what you say. Even if they cannot talk, they understand that you are saying they cannot crawl and that you are discouraged. That is not the best way to encourage them…

If someone asks you, have the nerve to answer: “I’ll tell you another time.”