One Mum's Story: Julie, Riley & Max

Riley and Max

My Butterfly Boys

I just read Holly's story about her beautiful baby Lilly's hearing loss and I can understand exactly how she feels. I have six beautiful children ranging in age from 14 years to 10 months. My fourth child Riley missed out on the infant screening by about six months and it wasn't until he was about two and a half that we realised he wasn't speaking clearly. He was talking but it was like another language.

We took him to Australian Hearing for a check up not for one minute thinking there would be anything major wrong. So you can imagine my total shock and disbelief when we were told he had a moderate to moderately severe hearing loss and would need hearing aids. I cried all the way home and everytime I looked at him for about two weeks after I felt like crying. My main concern was what sort of life he was going to have.

He had moulds taken that day and was back the next week for his fitting. The look on his face was amazing and once again I felt like crying. The older three children were checked but they were all fine. There was no explanation for it at all.

We were told it wasn't likely to happen again so you can imagine our surprise and devastation when four years later our next baby Max failed his newborn screening test. We were booked in for further testing but because Max was four weeks premmie and born blue they said it may just have been a carry over from his birth and he would be fine.

We had the tests done when he was three weeks old and he has exactly the same hearing loss as his older brother. We joke that they are twins born four years apart as they are the image of each other with their blonde curls and funny toes as well as their hearing loss. Being the second time around it wasn't as overwhelming although it was still a devastating blow.

Max had his aids fitted at two months and is doing well. Riley is now seven and is in year one at our local infants school. He has a teacher's aide for a few hours a week and wears an FM system in class but he is generally like everyone else. He does Little Athletics, plays soccer, swims and loves being outside. Max is three and has two sessions with a therapist each week and will be going to the same school as his brother.

If you didn't see their hearing aids you wouldn't know they had a hearing loss. They have both always been good with keeping their hearing aids in and Riley now checks his own and puts them in. We call them their 'ears'. All I have to do now is say 'Have you got your ears in' and they will get them.

It is hard to believe that when they were born they couldn't even hear a bird. It still makes me cry. We use basic sign language but prefer to get their attention and then speak to them. I feel it will be easier for them to communicate in the outside world as not everyone knows sign language.

We were very pleased when our youngest Jack passed his hearing screening on the first go. I hope that it helps my other children have more compassion and understanding for people with disabilities even though they don't see that their brothers are any different to them. I also thought it was funny how Holly mentioned the symbol for the Hear and Say Centre being a butterfly as I think of Riley and Max as my "Butterfly Boys".

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