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Mother of a Multiple Handicapped Son:
"One Should Not Hide at Home"
No matter whether it is basketball or musicals – the son of Ulrike Putze gets enthusiastic about big events of every kind. So she tries to allow him visiting such events over and over again. Nothing unusual? Maybe at least a little bit: Tim is bound to a wheelchair on account of a multiple disability.
Ulrike Putze and her son Tim;
She has given up her job as a chemist years ago. Ulrike Putze is only there for her son and the family. REHACARE.de spoke to her about dressed up people, small tricks and Tim's dream of buggykiting.
REHACARE.de: Mrs. Putze, your 13-year-old son Tim is locomotory on the level of about four months, cognitive, however, on that of 5 to 6 year-old. How did it arrive?
Ulrike Putze: In the 27th pregnancy week it was clear that he would come into the world too early. In spite of many attempts of the doctors one could not detain the premature birth any more. Rather fast after the birth, Tim had a brain haemorrhage. At that time the doctor told me that there would be so much damaged in Tim's brain that he would probably never be able to perceive us. Luckily it has not come like that in the end. But I am glad that the doctor has prepared us for the worst. Better in such a way, as if I have wrong hopes which are disappointed then.
REHACARE.de: How is his prognosis by now?
Putze:His physical constitution will not change any more. For it was destroyed too much in his brain. When Tim was one year old, his bad epileptic attacks began. In the meantime, the medication is put luckily, however, so well that he is free of seizures. On account of his brain haemorrhage Tim has spastic tetraparesis, so he is paralysed. He cannot raise his head independently and also cannot sit on his own. Whether his mental development will still improve with the years, the doctors cannot exactly say. But there is at least the possibility.
Tim is a very cheerful boy. With his laugh he can win other people over very easily; © private
Photo: Tim laughing
REHACARE.de: How big is the nursing expenditure then?
Putze: The care of Tim is very time-consuming. We must feed him, move him, wash him, advance him and transfer him. It is, in principle, like with a three month-old baby. He can also not chew properly, so we have to mash the food. But he eats with pleasure and almost everything.
REHACARE.de: Tim attends a special school for mentally handicapped children. How does your everyday life develop after school end?
Putze: When he comes home, we do things also other families do. We try to be a very normal family with a normal everyday life. Indeed, we must be very spontaneous. Though we plan a lot and we also have to include more time for many little things, we are always put on the fact that we must call off appointments spontaneously. Families with a small child will also know this.
REHACARE.de: Nevertheless, you can do quite other things than families with a small child.
Putze: Yes, this is right. Tim loves big events, no matter whether sportily or musically. Then, however, he is excited always very much and seizes. Still he loves, for example, the atmosphere with basketball plays. There he always is completely into it: He looks up to the boards or also taps his forehead at the referee sometimes. Only with the mascots of the teams he has his problems. He does not like it when people are dressed up.
The musical "Tarzan" was very impressive for Tim;
© Stage Entertainment
REHACARE.de: How does this express itself then?
Putze: We visited the musical "Tarzan" in Hamburg. Then some dressed up actors ran through the auditorium onto the stage and they directly passed on the wheelchair places. This frightened Tim always quite dreadfully. Therefore, after the show somebody invited us to get to know the actors behind the stage. When the door opened, a big gorilla, Tarzans father, stood in the door. Tim was very frightened again. However, I think that he has to handle such situations every now and then. He also should be toughened a little bit; I cannot always protect him of all and everybody.
REHACARE.de: Does his handicap limit Tim in his quality of life and joy of life?
Putze: Actually, I would even say that Tim has more joy of life than maybe others. He is a very cheerful boy, he can win people over very easily. He listens to music with pleasure. He does not like quiet music in such a way, particularly not the Germany lullaby „La Le Lu“. When he was still younger, the song was always played during the check ups at the doctor. He connects only disagreeable situations with it. However, this effect is sometimes also helpful if I am honest.
REHACARE.de: In what way?
Putze: If we are, for example, at the dentist and he does not want to open his mouth or if he seizes while he has a spoon in his mouth, then I sing the song and he opens immediately his mouth to shout. Now this might sound mean for many, but sometimes one just has to know how to help oneself.
REHACARE.de: So you often have to find creative solutions for problems concerning Tim?
Putze: Yes, need makes inventive. Anyway I think that one should not always say already in advance that certain things do not function. One should always try it out. And one will ascertain: Damn a lot functions!
Awesome! Tim after buggy kiting;
REHACARE.de: Do you have an example for such a situation?
Putze: My husband and Tim's little brother Philipp always surf on our vacation by the North Sea. Tim thinks the buggy kiters on the beach are absolutely cool – with their helmets, the buggy and above all the speed. He also wanted to do this. But I believed that this would not be possible. However, the surfing teacher has specially contrived something for Tim and has attached two buggies one after the other so that also Tim was able buggy kite once in his life. He was so happy when he jetted across the beach and came at the end mud-splashed again to the standing position.
REHACARE.de: So you only have to dare?
Putze: Yes, that’s right. Of course one cannot do such things with all children like we do with Tim. There one also has to look as a parent and weigh the possibilities individually. But one should not hide at home – namely too many make this.
This interview was conducted by Nadine Lormis.