Stacey- my story as a mum raising a deaf child

Hi. I am very blessed with 3 children who constantly make me laugh, frustrated, exhausted and amazed all at the same time. They are 3 little bundles of energy who don’t stop and all have very different personalities. Chelsea is 14, in grade 9 and is smart, caring and very protective of her brother and sister.The twins Noah and Grace are 9. Noah is very full on, funny and quirky but is extremely loving. He also has ASD, ADHD and sensory processing disorder.

About Grace

Grace is strong, quiet and has the biggest heart of anyone I know. She has a bilateral sensorineural moderate/severe hearing loss. She wears hearing aids and also has a roger FM system. Grace attended the Yeerongpilly ECDP and is now in grade 3 at a catholic primary school with her brother.

I am slowly learning sign language and although Grace isn’t using sign language fluently in her day to day activities, it has been a great tool to help her with her language development to have a visual tool to make sense of the words. As we don’t know if she will continue to lose her hearing, we thought having sign language as a backup would also make things a bit easier in the future.

Grace and her brother were born very premature at 28 weeks. She weighed a tiny 730g (1lb 10oz). At 1 week old she developed an horrendous staph infection in her IV site in her leg. Within hours the infection was into her blood and brain. She had seizures, multiple blood transfusions, suspected meningitis, and a brain bleed, among other things. She was treated with a super strong antibiotic called gentamycin and then the doctor gave her an hour to start responding to the meds or we had to say our goodbyes.

Our little Grace fought like anything and defied the doctors and after a long 3 months we were able to take her home. Now you are probably wondering why I am telling you all this but a lot of this background speaks to why Grace’s hearing loss is unexplained and how her story is just not about having a hearing loss but also having other disabilities as well. Grace passed her newborn screen when we eventually left the hospital and then again passed her 12 month follow up hearing test the Mater Hospital gave premmie babies as part of their Healthy Hearing program.

Gracie's world

At 2 years we noticed something was wrong as she wasn’t talking, making noises, interacting with anyone and generally living in her own little “Gracie world”. A lot of people that we raised our concerns with, including friends, family and medical professionals, seemed to think we were being over reactive and overly sensitive; that is was just a ‘twin thing’ and that her brother was just doing all the talking for her. But parent instinct is a strong thing and after pushing and pushing Grace was given a hearing test. She was then diagnosed at Mater audiology with a severe to profound hearing loss and referred to Australian Hearing in the City.

In Dec 2013 she was fitted for hearing aids. Unfortunately though with Grace being so young and lacking focus and any attention span, she was unable to “condition” to the puppet show properly and therefore accurate hearing test results were not obtained. It took a year of constant hearing tests to get accurate results and finally the hearing aids were set to the correct levels for a moderate/severe to severe hearing loss.

To this day we still have no answers to her hearing loss. We were told after the diagnosis that the antibiotic she was given when she was sick, Gentamycin, can cause HL but it usually does it straight away not 2 years later. The doctors have said that with Grace being premmie, so sick and ventilated etc, anything of those factors could have contributed to it. Her language development continues to slowly improve but unfortunately it is not coming along as quickly as everyone had hoped.

As a result of all her early ill health, Grace has a significant global development delay which affects her physically, socially and also her speech and language. She also has an acquired brain injury or brain damage which has caused an intellectual impairment.

What if?

When we suspected Grace had a hearing loss, I mostly felt fear. Once our suspicions of Grace's hearing loss were confirmed, there was mixed emotions. It’s hard to explain, but there was a slight feeling of relief, that’s in the context of knowing. But more overwhelmingly we felt great sadness, guilt and fear. Sadness for Grace and guilt from me that I was to blame. Had I not delivered Gracie early, would she have got the infection or had to be ventilated? Did I do something in my pregnancy, etc. What if, What if??!! Also what would the future hold for Grace, how would she cope, how would people treat her? All these strange and irrational thoughts constantly popped into my head!!

It is a roller coaster

Now I feel more confident that Gracie will be ok. She continually amazes me with her progress and her beautiful happy nature and her strong will only draws people toward her rather than away. Everyone who meets Grace loves her and no one is worried about her hearing loss or disabilities. And if they are, then this protective mum will be all over them!! Every time I am happy about something she is doing there is always a medical professional pointing out that she isn’t doing something else. I feel like I am on a constant roller coaster of being happy and then sad or frustrated at the next turn.

I struggle on a daily basis to have a conversation with Grace or to understand what she wants. I worry that she won’t ever have the ability to have a normal conversation and I can tell she is just as frustrated for me to not understand her. I find it sad that she can’t answer my questions when I pick her up from her school “how was your day?’ ‘ what did you do today?”.

Being informed really helps

I have worked out that the best way to deal with these feelings is allow myself to feel them and to cry or get angry. I then just break the problem down into smaller issues and deal with each day as it comes. Looking at the bigger picture just makes me more overwhelmed again and then those pesky concerns and irrational thoughts pop back into my brain and makes the whole situation huge and unmanageable again. Also being informed and getting as much information as I can really helps and sometimes allows me to solve the problem or at least come up with a plan or course of action.

Gracie is surrounded by some fantastic people who love her wholeheartedly.When she was diagnosed not a lot of family or friends around us voiced their opinions or feelings. They were just supportive and seemed more intrigued about how the hearing aids would work and whether she would get a cochlear implant. That seems to be the main question people ask now – whether she will get a cochlear implant. I don’t think people realise you have one or the other. I think they think you start off with hearing aids and if they don’t ‘work’ then you get a cochlear.

Grace’s diagnosis didn’t really change my views of deafness but I do think it has opened up my understanding of just how hard parents have it with a child who is deaf, HOH or has a disability. I think I took it for granted how easy it was for my other 2 kids who are hearing, to talk and interact with people. That interaction and the ability to speak and listen is very hard to explain and teach in a child who doesn’t have full access to sound. I find with Grace and her disabilities that its harder to discipline her when she is naughty as she may not understand things the same way as Noah and Chelsea. Or I have to change the way I talk to her as too many words in a sentence confuses her.

I also have to be mindful that I don’t call her or try to talk to her from another room (which I do all the time with the other 2 kids!) I really believe having a child with a disability has allowed me to “weed out” the people we don’t need in our lives. Simply put if its ‘too hard’ to deal with Grace then you don’t make the cut! I think her deafness has also made me become more informed and to be a stronger advocate for her.

Being a Parent Mentor helped me

I think having met a lot of families who are going through a similar situation at Yeerongpilly as well as working as a Parent Mentor has really helped me to understand and be accepted into the deaf community. I feel I can be myself and share my worries without worrying I will sound silly. I also think those friends also understand what I’m going through and can sympathise which I find my friends without HI kids don’t understand.

I find my friends and family who aren’t going through what I am don’t fully understand but they say things like ‘it could be worse – your child could have cancer’ or ‘you are just so lucky to have her’ or ‘I get it what you are going through as my kid was playing up today too’. Whilst I appreciate what they are saying, I just don’t find it helpful and it just annoys me. I know I am extremely lucky and grateful to have Grace (I have never said otherwise), I know the situation could be 100 times worse but this is what is happening right now in my family and that’s all I can think of – how it affects Grace and us as a family.

The strengths I see in myself as a parent are resilience, courage, pride, strength, protective and an advocator. I have learnt that Grace’s best advocate is me and that I have to fight for Grace’s best interests every day. Grace is strong willed, caring, brave, persistent and has the most wonderful outlook on life. She is always happy and just continues improving after setback after setback.

Dealing with these challenges have made me a better person and mother and has completely changed my career and life for the better. It has also bought me here to DCA and working alongside all these lovely people who have been a great support network for me.

Through this work it has also helped me be more informed about the deaf community and has helped me understand and process my emotions so that I can then help other parents.

I love Grace with every fibre of my being and I am so incredibly proud and amazed by the little fighter that she is. She makes me laugh and improves daily. The only thing I want most for Grace is that she is happy and healthy. I want her to see herself the way I see her! I want her to be so proud of herself and everything she has achieved and overcome so far in her short life.