Kicked while I'm down- my second son is diagnosed deaf also!

March 19, 2004

Well it has been a long break between writing. With good reason. We have been knocked off our feet again, when we hadn’t really got back on them. Hunter (18 months) has been diagnosed with the exact same hearing loss as Indi. Moderate, bilateral, sensory -neural. He will also need hearing aids. We are yet again in shock and absolutely overwhelmed. We are very, very confused. We want to know why this has happened to our boys’. We even had 2 hearing tests at Geelong Hospital Audiology for Hunter just to make sure there was no mistake. Warren and I sat in there, watching him play the game. He was having fun and enjoying himself. In typical Hunter style- smiling and charming the 2 ladies that were testing him. But, he simply did not hear the quieter sounds. It was so sad, I was so shocked. I honestly thought he was fine. I had no idea. He appears to be so responsive; he turns when I call his name. He can’t be deaf too. I don’t understand it. I was trying to talk myself into the fact that he was young, and maybe not paying attention to the game. But he was paying attention. We went over to the other room and did a special auto-acoustic computer test. This is where he had probes put in his ears to see his response internally. Not relying on his reactions. His cochlear proved that the nerve hairs were not responding to the sound. He definitely has inner ear nerve deafness. So, we were dealt another blow. This time Warren reacted worse than me. He was really quiet, and when he did talk about it, he just kept saying it was so unfair. “The boys have been ripped off. What about all the kids born to parents that don’t give a shit, and there is nothing physically wrong with them”. He was really angry. I remained positive for some crazy and unknown reason. I kept telling Warren the boys’ would be fine. They will have a normal life. They are happy boys. They will become closer now that they both have the same problem. They are not in pain. As long as they are happy I can cope with it. I surprised myself at how positive I remained. Everyone else around me was falling apart at the news of Hunter. I tried to analyze my feelings. I actually thought maybe this whole deaf thing wasn’t my fault after all. Maybe I wasn’t to blame.  I can’t have done something wrong to both of them. I started to accept that it wasn’t my fault. I felt less guilty once I found out about Hunter. Don’t get me wrong, I still felt sick at the thought of poor little Hunter being deaf also. But, maybe I was coping better this time because it shows that I can’t have done something wrong in both pregnancies.  But then I thought a bit more about my feelings. Maybe, because everyone else was so shocked and upset this time, I was the one who had to remain positive. I couldn’t let myself go, with all the grieving, like I did with Indi, because who would be the positive one? Who would be the one to say everything was ok? No-one was saying that right now. Everyone was saying how unfair it was, and how much more work I will have now. People ask me how I’m coping with the news that both my sons are hearing impaired? So I stay positive for that reason. I had to keep my wits about me in front of the boys. Life goes on.

Then, about a week later, it really hit me hard. I fell in a big mess.

We were staying overnight at a friend’s house. We had both the boys in the bedroom with us. As we crept into bed later in the night, I noticed Hunter’s blanket was off, so I put it back over him. Silly mistake!  He woke up and started crying. I tried to console him in his bed, kept lying him down and stroking him. He would settle and when I walked off he would start again. This went on for about 30 minutes. I was cuddling, caressing, rocking, everything I could think of. It felt like all night. My stress levels went up quickly. In the end I just thought - well he has to cry himself to sleep. I’ve tried everything. I can’t do any more. He cried and cried. Indi stayed asleep. Although I was glad he didn’t wake, I felt upset that it was because he was deaf. Eventually, after a lot of crying, Warren said “Well aren’t you going to do something? Indi will wake up, if you let Hunter keep crying!” Anger building, I went and picked Hunter up and brought him over to our bed. Hunter kept crying. I felt exhausted. I felt helpless. My frustration was building and building. Suddenly I yelled at Warren, “That’s right; you just keep lying there doing nothing and trying to get some sleep, while I try everything I can to keep him quiet! Don’t you worry about me”!!!  Hunter started really screaming then, watching me yelling at Warren. It was all too much, and suddenly I just started punching Warren’s chest, over and over and over again. I screamed uncontrollably at him. I can’t remember what I was saying, but I was hysterical. Then I finally stopped, Warren took Hunter from me, and I turned over and balled my eyes out for a very long time. I finally released all my anger and frustration that had built up since we were first told about Indi. It was the most awful moment of my life. I have never felt so low. Poor Hunter fell asleep on Warren’s chest. I fell asleep on a pillow full of tears. Our darling Indi never woke and never knew any different.

The next morning Warren immediately apologized to me. I apologized to him for hitting him. He said he knew I needed to release some energy, so he just understood my reaction. He then joked and said “it’s only a couple of bruises”!! We had a big long hug, and blundered through the day, both exhausted.

Hearing Aids get fitted.

He gets his hearing aids fitted this Friday 27^{th (2003)}. Everyone is telling me it will help with his frustration and temperament. I simply cannot believe this until I see it. I fear his hearing has deteriorated over time. I’m not sure whether I am just a lot more aware of him not hearing, or whether it really has become worse. The audiologists are hinting that it possibly has worsened over time because he passed the test back in November 2002. They indicated that maybe he could hear clearly then. I don’t think we will know until he has continuous tests done over time, or maybe we will never know.

Today is Saturday 28^th February. Indi got his hearing aids fitted late yesterday afternoon. He was very good during the fitting/programming. He had to be very still while the audiologist set the digital frequencies to suit Indi’s type of hearing loss. Indi just sat there and let him do it. I was very impressed, I was expecting him to say no and fight it. Once they were turned on he acted a bit weird. I think he was stunned or surprised, plus he had a look of concentration on his face, like he was really listening to the different sounds of our voices etc. Then he started repeating himself over and over, saying “Hunter’s in daycare” about a million times. I’m sure he was listening to his own voice. Then he was making loud funny noises and being silly, again I think he was listening to himself. He must have sounded so different to himself. He wore them for about 10 mins, and then just took them out. I put them back on him for the car trip home, and he was fascinated with the music coming from the radio. Then when I stopped the car, he said “Where music go?” My heart felt sad that he must have never heard the car radio before in his entire 3 years. But today he wasn’t very keen to wear them. He did keep them in, here and there, but never longer than about 30 or 45 mins before he took them out. If I must say whether they are making any difference, I think it’s too early to tell. He won’t leave them in long enough. I think he can hear better when they are in, but they must annoy him, or he is just very conscious of them and wants them out.

The other day, he was playing in the sandpit in the backyard. I was hanging washing, when suddenly he yelled out, he was startled, and very frightened. I watched his face; I asked him what was wrong. He very quietly said “What was that?” We both sat together and listened. Then there was the sound of a bird, cooing, like a dove or pigeon. He grabbed me tightly and looked at my face. He was really terrified. I reassured him that it was a bird singing, and we tried to find the bird in the tree together.  Later I cried, realizing that he had never heard the sound of a bird before.

His behavior seems to have improved slightly over the last week or 2. After the children’s specialist came over and saw him in action we have seen some changes. The 3 house rules are working well. If he hurts, throws inside (destructively) and/or wrecks/damages intentionally, he goes straight to time out, no warnings. This seems to have started to deter him, mainly the hurting rule, as that was the most common form of poor behavior. Finally, I think we might be turning the corner. I feel positive today for him. I feel like he is going to be fine. We had a fun day, and he was happy. Which is great to see as it’s not that common. All I want is for him to be happy, to enjoy himself. He is only 3; he should be loving life!!

It's all my fault- Mother Guilt.

Here is the next section of my diary exerpts from over 7 years ago....

We are still at our wits end.  My tears flow heavily every day for the loss we have discovered. All I can think is “Why isn’t it me?” I so strongly want to take this burden away from him. The HUGE amount of guilt within me is overpowering. This is my entire fault. I must have done something wrong for this to happen to him. There is no other possible reason. I wake up thinking it’s a nightmare, but I soon realize this is something that will never end. This is real life, our life, permanent reality.  My family and friends try to comfort me, but their words don’t help. Their words can’t change my feelings. Their words won’t give him back his hearing. But slowly, I put the pieces of the puzzle together. It begins to make sense, this all fits into his behavior patterns over the last 3 years.

*Why did he physically turn my head to face him when I speak?

*Why did he never follow instructions at kindagym?

*Why doesn’t he listen?

*Why are his actions and words loud and boisterous?

*Why doesn’t he answer questions? Why is his speech clarity poor?

*Why is he the “naughty” boy?

Because he is deaf!

 But none of this makes me feel better at this point in time. I need more information.  What does this hearing loss mean? What does deaf mean? How much can he hear? Where will this take our future and his?

We are still frustrated with behavioral issues. We feel like we have gone around in circles 200 times. We talk to our family and friends. We are open to all or any ideas. We are mentally and physically exhausted. We have an appointment with a childhood counselor next week. She will come to our house and see Indi and speak with us. Yes we are now aware of his hearing impairment. But we have no idea what this means. We have been told the hearing aids will change his behavior. But I cannot for the life of me foresee this change. I only know one Indiana. I have known him for his whole 3 years. That’s just him. I speak to him louder now. He hears me straight away. But, he still decides to do the wrong thing. He still is extremely challenging. Even when the things going on don’t appear to be hearing related. His tantrums are horrible. They are becoming more frequent. Everything he touches is rough handled and done in the wrong manner. We cannot go to anyone’s house and enjoy their company. We are constantly on our toes chasing him, warning him, removing him etc. It’s not enjoyable. It’s not fun. It’s a task. It’s a responsibility. It’s our life.

We have to wait 2 weeks for the hearing aids. They are horrible big ugly things that look like they were made 50 years ago. I am extremely disappointed in this day and age that they still offer these as hearing aids to young children. In the meantime we have his third birthday next week. He is having a party at McDonalds. Let’s hope he enjoys it. The next 2 weeks will be extremely slow. It already feels like months ago we found out. I have been given a lot of literature to read. I want to find out a lot more information about hearing loss. But I can’t bring myself to actually reading it. I have tried a few times, but it hurts way too much. I just end up in tears every time. I just can’t do it yet.

Well here I am back again. It’s 21^st February. Indiana is now 3 years old. His birthday wasn’t too bad. He had daycare on the day, which he wasn’t very happy about. But I ordered him a birthday cake and they had a party for him. We had our family visit us that night, and we had cake and a small family party. He really loved that. Last Wednesday we had Susan Edge come over. She is a Specialist in children’s behavior between 0-5 years. She was very good. Indi gave her plenty of examples on how to defy my orders and blatantly not do as he was told. The things I learned from her were to make set rules in the house. And more importantly I MUST stick to them. The main example is no hurting. He goes straight to time out without warning for that. Other things that aren’t as important but still need to be listened to get the 3 point technique. First, I might tell him to (pick up his toy). He may ignore me or say no. I should then go over to him and physically, but calmly, put his hand on the toy and make him pick it up. If this works I praise him for listening and picking it up. If he doesn’t want to do this he then goes to time out. These are the basics. There is a lot more to it. But I really need to think before I ask him anything. Is it going to be an order or a request? If it’s an order I must follow it through. If it’s a request, it’s ok for him to say no. It’s about consistency, and meaning what I say. He has to learn that I mean what I say. So I feel a lot better after she visited. She made me feel that his behavior was actually not excessive, and definitely controllable, for an active 2/3 year old. We just need to get on top of it.

things get worse...

Here is the next section of my diary entries....

But over time he got worse, he would rarely listen to us. We would end up yelling. He would get angry in return. He would yell back at us. We would then take away some of his privileges. He would just “take” them back. (E.g. tell him no more TV for the rest of the day, and then he would just say no and turn it straight back on) We would then send him to time out. He would retaliate by kicking and screaming the door down. He broke the lock on numerous doors. We all would end up exhausted and crying in utter frustration. We were at our wits end. We even tried smacking.  We knew in our hearts this was not productive discipline, but we felt trapped in a corner. We had no answers and didn’t know what else to do. He became more aggressive in his general playing and in his approach to us and other children. He would smack us and Hunter. So we stopped that.

I used to cry a lot. Almost every day. Warren would come home from work and I would sob to him- “He’s (Indi) only 2 years old!! What has a 2yo got to be so angry about? What am I doing so terribly wrong?”

I read books on behavior. I researched the internet. They gave me some ideas to work with. I would discuss all these ideas with Warren. We would get a renewed sense of possibility, of hope. We tried these ideas for a week or so. They seemed to work. No yelling. No aggressive behavior. Then slowly but surely things would slip back to the old ways. I’m not sure if Indiana instigated this change or we did, unintentionally.  He just had this perfect way of pushing both of us to our extremes.

Then I decided to get another hearing test. What prompted me this time was a book by Kaz Cooke called “Kid Wrangling”.  I discovered a section about Glue Ear. Kaz listed a variety of symptoms for this condition. To our surprise, Indi had ALL of these! He always asked for the music/TV to be turned up. He didn’t always turn around when we call his name. (I always thought he was ignoring us or simply not listening). He got ratty and irritable in situations with lots of people everywhere. I asked Warren to read this Glue Ear section of the book. Shocked, he agreed with me, this must be what Indi had. So I took him to the GP.

 No, He does not have glue ear. I was actually disappointed. I think I really wanted a reason for this behaviour. I needed to know it was not just poor parenting. Then I started to think more about the symptoms of Glue Ear. Why does Indi have all the symptoms of this hearing problem? So I booked the hearing test.

Oddly, I felt quite optimistic about the test. I was reasonably sure he would pass it. He passed the last 2 tests.  Indi and I arrived at Audiology, Geelong Hospital. He was in a good mood, and very co-operative. He was very excited by the game he could play when he heard the noises. He started off really well. Then, as the noises became softer I could see he started to struggle, but still hearing them, just. Then he missed one. Then another. I felt unsettled. I started urging him with all my heart, willing him in my mind- “There it is mate, that’s the noise, c’mon; you can do it, put the block in the bucket”. My mind was desperately screaming at him. But he continued playing obliviously. The feeling in my body was very disturbing. I had to force myself stay on the seat and do nothing to help him. I vaguely hoped that maybe he was just ignoring it!

But, for some absurd reason, I was still absolutely shocked when the Audiologist said that he has some hearing loss. I thought that it can’t be very serious. Maybe it’s just a minor infection that needs antibiotics. At worst, maybe he needs an operation to fix the problem. But no, that was not the case. Indiana was permanently hearing impaired. He had nerve damage in both ears.  It was a forever thing. It could never be fixed. He had a moderate hearing loss in both ears. They had very reliable and conclusive results. But it still hadn’t hit me. The audiologist went on to say that Indi would need help, in the form of hearing aids in both ears. Clunk! There it was. It suddenly hit me. It hit me so damn hard I stopped breathing. Nothing more went into my head, although she continued talking for a while longer. I could only burst into tears. I was absolutely devastated.

How it all started...

This is my very first post, of my very first blog! I hope to gain some readers who want to learn about the trials and tribulations of being a parent to children with deafness. I've decided to post excerpts from my diary entries starting back in 2004. My 2 sons are Indiana (born 2001) and Hunter (born 2002). Then there will be a time gap, and I will continue writing from the present time. Of course I am hoping that the people who read these, may have questions, and I am more than happy to answer these. So please enjoy reading about my life as a new mother of young boys, and how things have changed over time. Here is my first entry -

Today is February 13^th 2004. Well I guess I should start with a little history of Indiana and his behavior up until the day we found out he was deaf. As a baby, there were no indications whatsoever. One day, the front door slammed and Indi jumped a mile. I remember my mum saying to me; “there’s nothing wrong with his hearing”. He passed the 8 month standard hearing test, and I thought nothing of it. Of course he passed. There is no deafness in our family history. Now that I know, the one thing I look back on is that he rarely turned when we called his name. But I justified this by thinking he hadn’t learned his name yet. His physical developments were advanced. He walked at 10 months. He was climbing the couches by 12 months. He was throwing and catching by 15 months and feeding himself easily. Everything seemed in order.

It was between 12 and 15 months Indi’s behavior became very challenging. He seemed to never listen to us. We were trying to teach him right from wrong. We gave him plenty of positive attention when he was well behaved. But this was becoming less and less of the time. At 15 months I made an appointment to see my local maternal health nurse. Everything I told her about his behavior seemed to be classed as normal for that age. She gave me about 6 information sheets to read about challenging behaviour. For example – “Difficult Mealtimes”, “Time Out”, and “Behavioral techniques”.  We began putting Indiana into time-out at 15 months. We felt uncomfortable doing it. It made virtually no impact on his behavior. Sometimes it became worse with a lot of aggression. I started feeling very down on myself, thinking I was a bad mother because his behavior was so “full on” and, at times, uncontrollable. I felt like I was trying really hard, and getting nowhere. I didn’t understand why. I was an educated mother; I did not spoil my child and did not give in to his every demand. He ate healthy food, he slept well, and he had loving parents from a stable background.

I decided to get another hearing test for him. I don’t know exactly why I came to that decision; I knew he could actually hear me. I think I just wanted to rule out “something”. He passed it. He wasn’t exactly focused on the situation, easily distracted.  But the audiologist seemed to think he could hear the noise, but would only turn his head “in his own good time”. You see, he didn’t turn his head instantly to the noise, but only after a little bit of time passed, so she thought he could hear it, but was too focused on playing the game in front of him to turn instantly. This was November 15^th 2002. Indi was 21 months old. His behavior steadily got worse. Occasionally he would respond well to something and I would think he was turning the corner. Like the time his communication seemed to suddenly improve. Somehow he appeared to understand and talk to us more. This helped both him and us. It was like the penny dropped, and he began to understand things, like consequences. He would go to do something wrong, and stop himself because he knew he would be sent to time out if he continued. Previously, he didn’t seem to care about any consequence or warnings. In hindsight, I think I started communicating to him on a different level - unconsciously. I think that somehow I knew - if I needed to talk to Indi and get his attention, I had to kneel down to his level, and talk close to his face. I didn’t register what I was doing, or why I was doing it. I guess it was some sort of maternal instinct.