Galaad's Diary
 |
Progressive progress |
| Chapter two of Galaad's diary, written by his Dad, Fabian von Berlepsch. | |
|
First chapter is available
in the documentation room, Miscellaneous
section.
|
It is a massive shock to suddenly discover that your own child is deaf
As an outsider, it can be very difficult to understand the shock that parents
in these circumstances experience. It's as if the child's life has been condemned
because like all disabilities, deafness affects their entire life: friends,
play, learning, career - communication is so important for all these things.
What will happen to our son?
Only parents who have been through this terrible experience can imagine what
it feels like to hear their own child shout out "chat"
[cat] . You can't put this gift into words. It's as if something impossible
has actually happened and you are so grateful to get a second chance …
Galaad has had artificial hearing for a year and a half now. For six of these
months, he has been using his speech and the speech of others to communicate
with the rest of the world. Who'd have thought that such inauspicious beginnings
would end so happily?
As soon the implant is fitted and the first impulses are passed to the child's auditory nerve, the parents always ask: how well can my child hear? And then suddenly add: what's the best thing I do to help him develop his understanding and speech?
It's difficult to say how well the child can hear because the quality of hearing depends on fac-tors such as ossification which affect how the impulses are transmitted. Even in perfect conditions, it takes several months for the child to display noticeable responses to auditory stimuli and with Galaad it took over a year for him to make real use of this artificially resuscitated new sense of hearing.
Galaad started by responding in a way which made us think he was scared of sounds and noise rather than being interested in them. For example, he quickly jumped onto our laps as soon as he heard anyone coming up the steps to our room. He seemed to need almost 10 months to realise that what he was hearing was actually information and not a danger. These 10 months were almost disheartening. The only thing that kept us going - and the only reason why we are recording our experiences - was what we had seen in other children.
It was a long time before we really knew how well our son could hear. He was responding but we didn't know how accurately he was hearing things. We've only in the last few months been certain that he can hear well. And what has convinced us of this is the way that Galaad's own speech has suddenly improved. The fact that he is for example learning to distinguish between a P and T and that he's doing this without any help from a speech therapist is proof enough for us.
Car !
Galaad only started to speak himself about a year after he was fitted with the CI. It didn't take long for him to make up his own words and of course we were all expected to understand them … But luckily this "egocentric" phase didn't last long. He soon started picking things up and started to imitate simple monosyllables and then quickly moved onto words of several syllables. Of course, he slurred the nasal, labial and dental sounds but it was the first step towards simple understanding and he was getting more and more interested.
Even so, we still didn't really know anything about how good his quality of hearing was because he only imitated simple sounds and vowels. People were always telling us that you always expect too much of your own child but I believe it's important that you should. If you don't constantly, gently and patiently push your child, he would loose all sense of the direction needed to actively work on his hearing. It was only by constantly and creatively pushing Galaad that one day he proudly announced that he wanted to see the "CAR". For weeks, he'd been talking about his "PAR" and could pronounce the C properly. But suddenly, about a year and a half after the operation he managed it. This subtle difference between CAR [auTo] and PAR [auPo ] proved to us that the CI can produce a very good quality of hearing. Of course, there are other problems, such as mental handicap, or as with Galaad ossification of the cochlea but his prospects for the future are now great.
Since then we've realised that fitting Galaad with a CI is doing a lot more for him than simply allowing him to detect sounds. Realising this has been a great sense of relief and has given us hope so that we can address the whole subject in a more relaxed way. Rather than worrying that our child will have major problems over the years in communicating with the rest of the world, we now know for sure that he can have a normal life. What more could we want for him?
Active support
When we first spoke to the French speech therapist, she explained that our role as parents must not overlap with that of a speech therapist.
We should leave this to the specialists and concentrate on being parents. Personally, I disagree with this approach. I think that if parents can help, it is the most efficient way of working because parents are there for so much more of the time.
I was told that conflicts between parents and the child would hamper speech developments. Let's take school as an example: of course, conflicts with parents would hinder the child and in the long term produce poor results. But these same results could be improved through posi-tive and encouraging support from the child's parents. Why should speech therapy be any different?
We therefore assume that we have to play a key role and are responsible for our child's progress. For example, Galaad found it difficult to say the French word MANGER [eat]. But he'd been able to say the same word in German for a long time (Essen), but he had real problems combining the two French syllables. We tackled this problem as follows:
first of all, we had to clearly repeat the word on a regular basis. If for example Galaad only said GE, the second syllable, then we answered with "oui MANGER". This response was both a confirmation and a correction. After a while and once he was familiar with the word, we emphasised the stress on the first syllable using gestures. For example, we stroked his cheeks, the right one during MAN and then the left one during GE and then suddenly he started saying GEGE. After a few days we showed him that GEGE wasn't right and corrected him. But we needed a "positive" way of doing this. This was a bit tricky because Galaad had understood how important it was to us that he pronounced the word correctly, and of course he immediately knew how to drive us virtually mad. But it wasn't all that bad, in fact we played along with it and he was very amused when we weren't happy. And then suddenly, he said it: manger. Later when he wanted to annoy us, he would occasionally go back to his GEGE. We decided not to pressurise him at all times and sometimes we insist he corrects himself and other times we let him "win" so he thinks he has one up on us.
Hi-fi, but not stereo
Our son may now have incredibly precise hearing, but there is one thing he will never have: localisation. Only one of Galaad's ears was operated on and he can't therefore tell where sounds come from. Whenever anyone calls his name, he looks up but first has to look at the lips of everyone near him to work out who called him. Eventually he will probably learn how to distinguish between different voices but he will never be able to tell the direction from which a sound comes as he would if he had the stereo effect of two ears. We could have had his second ear operated on as well, but we decided to leave that until later - who knows what research will produce in a few years?
We are excited to see how Galaad will get around this problem and will tell you about it in the future.
Can it be done with two languages?
Encouraged by the help of Dr. Bertram, the excellent Director of the CIC in Hanover, we have decided to bring Galaad up bilingually. We can't yet say whether this potentially risky deci-sion will be a success or not. What we do know is that Galaad can already say a few words in each language, for example ESSEN / MANGER (eat). However, he has not managed to always pick the right one for the person he's talking to which means that anyone talking to him also has to be understand both languages. He sometimes even enthusiastically invites our French neighbour to "ESSEN" …
