Today we have a guest column written by Inge Maters, member of the PCC Network and “our” physiotherapist. If you look at the development of young children, you see a baby change in 2 years from a helpless bunch of human to a walking and communicating toddler. Admittedly, in the animal kingdom this goes a lot faster and although many major milestones are achieved in those first 2 years a human child still needs about 18 years to be called an adult. And despite the fact that this is happening very quickly, you often hear young parents sigh that their child is not yet walking at 14 months or that it takes so long for the first words are coming. How different with the children of PCC. Here you sometimes have to be patient for years to see a developmental step, but when it is there, it is celebrated as a real milestone. Maame Serwaa Take for example Maame Serwaa, better known as Akèté (meaning “the little one”). Although she looks like a young toddler with her small stature and mischievous eyes, she is already 8 years old. She is in PCC during day time and goes back to her family for the night. Despite the strong spasticity in her legs, Akèté can walk short distances in a walker or drive a few meters in her wheelchair, but she would rather let herself be driven or lifted. Also during her meals she prefers to be helped by a sweet caregiver. She is a real PCC diva. When the question arose why she couldn’t actually eat by herself, this turned out to be a very good question. She has sufficient strength in her hands, the coordination of the movements (of mouth and hand) is sufficient and she is flexible enough in the joints. Still, it didn’t work. Then we made a few steps back in the development and allowed her to mess around with food until it accidentally ended up in her mouth. What a surprise that was! A few dirty outfits and a lot of encouragement later she picked up her first piece of bread and proudly put it in her mouth. A tiny step in the development, but a real milestone when it comes to independence.
James
In PCC often you have to wait a long time to notice a step, as James, now 16 years old, proves.
Despite a paralysis and deformities James walks quite smoothly in his walker. Downhill he makes it easy by sitting on it for a while and using his adapted shoes as a brake at just the right moment. He can even play a good game of football with it.
When James was about 12 years old, he could stand alone for the first time. At the age of 14, he was able to cross 1 meter for the first time, and yes….since this year James can (with great difficulty) walk the entire circle around the Physio Palace.
All small steps, but together a real milestone. Which he is very proud of himself.
Sadat
Sadat, now 23 years old, can get by just fine despite his severe motor disability. He drives independently in his wheelchair, climbs out himself, can eat and wash himself and follows a funny day program. But… .. after washing, he was not able to climb out of the pool. Much to the frustration of Sadat himself.
Fortunately, with the help of his caregivers, he was able to name this properly and with some specific practice, he succeeds when the stairs are dry. A very nice step for him! And no doubt he will soon succeed in a wet swimming pool as well.
Joël
Joel also has a nice milestone to celebrate, as a 14 year old boy with a lot of involuntary movements it is not very likely that he can handle a needle and thread. But he has been practicing his hand motor skills for years during “small physio”. Now he does all the exercises there within 30 seconds. So he has become too good for it.
He himself has an idea. He wants to go to the beads room to string a necklace. And….. it works. After a few tense attempts, one bead after another neatly goes around the needle. Who knows, he may do it more often.
Small steps…..and big milestones!!