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Fighting at Many Fronts

Fighting at many fronts

01.01.2012

If on a battlefield the opponents attack from all sides, the fight seems hopeless. Like this battle a mother has been fighting for her multi-handicapped daughter for many years. However, she will certainly not give up!

 
 
Photo: Women with sword

Fighting for the daughter's rights is easier said than done; © panthermedia.net/dinga

“Why must I always decide on one kind of handicap?“ Questioningly the 36-year-old Judith* lifts her hands. Her nine-year-old daughter Hanna* carries due to her deafness Cochlear implants on both sides, one body half is spastically paralyzed. On top of that Hanna's mental development is on the state of a four- to five-year-old.

The herpes virus CMV had released the chain of disabilities during pregnancy. “The virus caused inflammation in the head by which Hanna developed worse than other children and she was born four weeks to early“ tells Judith. “Hanna got a very strong antibiotic against the virus without it she would have hardly survived the first 14 days.“

After her reflexes had been tested after birth, moreover, it soon was clear that the little one would be presumably paralyzed half-sided. Other investigations proved that narrowing in the brain would delay Hanna’s development.

“Hanna had survived and for me it was always clear that I would do everything for this small fighter“, says Judith affectionately. During the first one and a half years this meant four spots per day muscle training to coach the reflexes; Effective, but also painful for the child and arduous for Judith. After some time she did not want to expect this ordeal of her daughter any more. So Judith turned to an occupational therapist that helped Hanna in gentler manner.

 
 
Photo: Hand signing "okay"

Mother and daughter communicate in spoken and sign language; © panthermedia.net/pixelbliss

Soon, it became Judiths major task to look for the optimum care of her daughter, to find new ways to support her abilities. At the age of two the little one was completely deaf suddenly. Then at the age of three years Hanna received her first Cochlear implant with which she could learn to hear again.

This far and no further

Ergotherapy, hearing therapy, remedial-educational horse riding against the spastics – the list of the therapies became longer and longer, the time expenditure bigger and bigger. “The problem is that I always had to drive to many therapy appointments with Hanna – for a long time twice per day.“ Among the rest, the attempt to accommodate the little one in a remedial-educational kindergarten failed due to the everyday drives to the institution in a collective taxi in which Hanna had to sit a total of three hours on the day.
Then at the age of four years the second Cochlear implant followed and Hanna looked suddenly paled and weak. Judith remembers: “Hanna reacted with yelling and crying – absolutely irritant-awash from the countless therapies and constant tours to the therapists and doctors.“ The sleepless and worried nights also demanded their tribute of the family.

Judith realised: “If I could not get any help it would not turn out well. Hanna had to be accommodated where she would not have to be on the move every day. And my healthy son and I also had to be able to come to the rest once. Brothers and sisters of handicapped children anyway suffer the most from the situation“, she knows.

However, where could she find such a place? The search was very difficult for Judith since the institutions in her closer surroundings one always said that one cannot take up Hanna there because she needed sign language what would not be possible there. The old song: One handicap “yes”, the other one “not”.

Please, the whole child

So many kinds of the disabilities were a problem for Judith over and over again: “During all the years since Hanna's birth people talked about ‘the leg, the arm, the ears‘ – but I wished that somebody would once look at the whole child“, describes the mother.

 
 
Photo: Man going away from his wife and child

Again and again there are parents who cannot cope with their children's disability; © panthermedia.net/123ucas

Many families with multiple-handicapped children move to South Germany because there are better linked facilities for them. However, I did not want to live my home town, here are my roots and my family which always supports me“, says the mother sternly.

After long search Judith found a boarding school in which Hanna could be supplied and promoted. “There she does not have to go to the therapists because they come to the institution or are very near“, describes Judith. “Hanna has her firm rhythm which is the most important thing to her.“ The only thing is that it takes hours to visit her.“ Therefore, Judith tries to accommodate her daughter nearby.

A wish makes her continue her fight: “How nice it would be if I could care for Hanna on my own and the therapists would visit us at home. With the right support this would be possible.“

* Names changed by the editors.

Natascha Mörs
REHACARE.de

 
 

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