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Story from my friend
Our son Jack was born in July 2006. He was our 3rd child and brother
to two older sisters Olivia and Sienna. He surprised us by failing the
SWISH testing in hospital and an appointment was arranged to see an
audiologist.
There is no history of hearing loss in the family
so we definitely didn’t expect this result. We talked ourselves into
believing that everything would be fine. He could hear us as he
responded to banging doors, and loud clapping. The poor boy, we were
constantly checking to see that he would respond to noises. At the
time we thought you could either hear or you were deaf – who knew
there was so much variation in between?
Four weeks later we were at the audiologist at Westmead Hospital. I
remember looking at the posters, but not really reading anything as I
was certain it wouldn’t apply to us. We weren’t particularly nervous
or anxious at the time. It took a while for the audiologist to
complete the testing, which started to worry me. Finally she had the
result – mild to moderate hearing loss in the left ear and moderate to
moderately severe in the right. I had no idea what that meant, except
that it wasn’t the perfect hearing that I expected. She said that
would mean hearing aids, but a cochlear implant wouldn’t be necessary
and he would be able to attend a mainstream school. The fact that he
wouldn’t need an implant and could attend school were the positive
things we hung on to. We were shocked by the diagnosis, but she showed
us the Frequency Chart as to what he could hear and we thought – well,
it could have been much worse.
So we took all the positives we
could from the situation, and then organised our next lot of
appointments. The day arrived for our appointment at Australian
Hearing to pick up his hearing aids. I was surprised at how upset I
was. I couldn’t believe that he was actually going to have to wear
hearing aids – it had been ok just talking about it, but the reality
of it really shook me. To be honest, I was wondering how I was going
to take him out into the world with the aids on. Wouldn’t people stare
at him and ask me questions about them; would kids tease him? Looking
back now, I can’t believe I was worried about these things, but at the
time, I didn’t know if I was capable of handling these situations.
Despite the fact that we were concerned about using hearing aids, for us the choice was easy; we wanted our son to hear and to be part of our hearing world. We weren’t trying to ‘fix’ his hearing impairment/deafness, but we wanted him to be able to communicate with us, our family and friends in the only way we knew how – we wanted him to learn to listen and to speak. Perhaps when he is older, he will make different choices, but we could only do what we believed was best for him. Others make different choices for their children; that’s fine. There is no right or wrong answer. I believe that as parents of hearing impaired/deaf children we need to all support each other in the decisions we make for our children.
We settled into a routine for his early intervention, and attended
firstly the Shepherd Centre, then after a year the Catherine Sullivan
Centre as it was closer to home. We got used to the hearing tests too
and it seemed to be fairly stable, but always at the lower end of what
we expected.
Time passed by and his hearing impairment was just
another part of life. His speech developed normally and unless you saw
his aids, you wouldn’t know he was hearing impaired. He started
preschool and settled in well, was achieving his milestones and life
was good.
At the back of our minds though was always the worry
that his hearing would deteriorate and or disappear. After fairly
stable results for a few years, his hearing had settled at
moderate/moderately severe and mod severe/severe, but then a hearing
test at 3.5 years indicated his worse ear was now severe across all
frequencies. We were disappointed, but he was coping well and with his
better ear, he was still hearing most of the speech range.
When Jack was about 4 years old I noticed that he was very attached
to the hearing aid in his worse ear. He wouldn’t mind if the other one
was not on, but made a fuss for the other one. I spoke to his teacher
at the Catherine Sullivan Centre and to the audiologist and we decided
to have another hearing test. Jack was very attached to his aids and
hated taking them off, especially for hearing test. We booked in two
tests a week apart so that if he was upset at the first test, then the
second test would be easier as he would have the process fresh in his
mind.
I was surprised how anxious I was before the test; I
guess I knew that something was not quite right. Jack was not in a
happy mood especially when he found out where he was going. Anyway,
somehow we got to do the unaided test. We started with his ‘better’
ear. There was no response at any frequency. I was watching him very
closely and I could see that he was not playing up, he really didn’t
hear anything. I was pretty calm actually – obviously in denial - but
I thought, well if we adjust his hearing aid, he may get enough out of
it to get by. So the next week we went back for an aided test with his
adjusted aids. Still nothing. He had started at birth with mild to
moderate and within 4 years he was profound. Technically my child was
no longer hearing impaired, he was deaf and the change was very
difficult to come to terms with.
I couldn’t believe how devastated I was at the loss of his hearing. I
felt like we did at his initial diagnosis as a baby. The whole family
was upset by the news – well, that’s everyone except for Jack. He had
no idea what all the fuss was about. Life carried on as normal for
him. I think I cried every day for over a week. I guess I was grieving
for the loss of his hearing; he had some, now even that was gone. Why
did it have to go? I knew that things could be a lot worse, and
considering what some families go through, this was nothing. But I
guess you have to allow yourself to go through the emotions, or else
you can’t move on. For the sake of our son we did move on – and we
moved on very quickly.
We knew the only option for him was an
implant, as he couldn’t get enough hearing from one aid. We also
thought that if the hearing in his other ear disappears, then at least
he will have the implant to provide him with hearing. Fortunately, my
husband and I both agreed that this was the best option for him, and
within 3 months of his hearing test, he received his implant. . The
words of the audiologist came back to me – ‘no implant’ – I couldn’t
believe that this is what we were at. It was an emotional time, but
after the surgery, we all felt relieved and ready to move on with the
next stage.
The day of switch on arrived, and I suddenly realised that from now
on, he would have to wear the processor every day. The same feelings I
had when he received his hearing aids came back to me. I was worried
about people staring at him and kids teasing him at school. But that
anxiety subsided much faster this time. The implant has worked so
incredibly well for Jack that it’s hard to believe he managed without
it. He loves wearing it but it has been the increase in his confidence
that has made such a huge difference to him – confidence that we
didn’t even realise he was missing.
He had a bad fall on
Australia day; he fell from about a metre, onto a concrete driveway
and landed on his head, where his implant was. It was a terrible
experience – he had a small fracture no internal bleeding and no other
damage. But was his cochlear ok? We had to wait until the next day to
have it tested, and thankfully it had survived. It wasn’t until then
that we realised how lost he would be without it, even for a short
time, and how much we had all come to rely on it.
We feel very blessed that we have had such opportunities for Jack.
From an early diagnosis, wonderful support from the Catherine Sullivan
Centre, audiologists, and the SCIC, and the constant love and
encouragement from our family and friends, we can’t believe how lucky
we are.
Jack is now 5.5 years and has started mainstream
school. The school has been very supportive and Jack is a happy,
engaged and social boy. He loves learning new things and is doing
really well; we’re so proud of him. The FM makes a great difference
for him in the classroom and he has been assigned a lovely itinerant
teacher that helps him for an hour or so each week. Jack has made many
friends: I have found that kids are curious and many have asked Jack
what’s on his ears. He simply explains that it’s his hearing aid and
his cochlear and it helps him to listen. Once kids have an answer they
usually move on, and that’s what I have found with Jack so far.
If there’s one thing I’ve learnt over the past 5 or so years is that
you need to love and accept your child for what they are, or are not,
as only then they can have the confidence to go out into the world
with their aids, implants or whatever else they may have to wear. For
Jack, these tools are part of his life and he already understands how
important they are to him. We may learn other tools, such as sign
language for the times he doesn’t have his cochlear, but for now, we
have our hands full.
Sometimes I see people looking at Jack then I realise that they’re looking at his aid/implant, but it doesn’t worry me at all, and I realise what a long way we have come.
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