heartbreak

About 2 weeks ago we were having a battle with Toby not wanting to wear his Cochlear Implant Processors, we thought that is was due to that fact that we have to tape them to his hear, and double sided tape to his ears. we thought it was because the tape pulled, and we were trying to think of ways to help him, but really the only way to hold them on his ears is to tape them there. But one of my special Face Book Friends (a mother of an older child with severe CP) suggested that we actually ask Toby why he didn't want to wear them. Duh!  why didn't we thing of that. 

So we pulled out his special PODD communication book, and asked him why? expecting to know the answer we were both shocked and completely heartbroken to hear him say that he didn't want to ware them because they made him different. wow, how do you handle that? 

For the first time ever Toby had expressed sadness due to his disabilities. I knew that it was coming, I knew that one day we would have to deal with it, I just wished that one day was a long way off. To hear this from Toby, brought about our sadness for him and stirred up many suppresses emotions, grief for all the things that Toby would never be able to do, for all the dream that have had to be altered or forgotten as his abilities differ so much to our dreams and hopes for our son. 

To hear that at just 5, he was starting to understand that he is different and to start to reject that was just heartbreaking. 

Immediately we knew that we were our of our depth, we sought help with a social worker with the RIDBC, (Royal, Institute of Deaf & Blind Children) in Sydney, and I have a very informative session with the psychologist. who deals with non verbal children all the time. she explained that although it was a sore spot for Toby that we  had to make him put on his cochlear implant processors just like we would make him brush his teeth, we had to make it, a NO option subject, as if we give him an option he will be loosing valuable hearing time and could develop tinnitus due to the hearing nerve trying to search for sound.  

Kent and I didn't like the idea of pushing him to do something he didn't wish to do, as Toby is such an easy going boy and doesn't normally make a fuss. We have been working so hard to give him a voice, that we didn't like that we would be taking it away form him by forcing him to wear him processors against his will.  now we have such a tough decision, 

He does not complain, he does not wish to run, to play rough & tumble with the other boys, he never gets upset over his lack of ability to do the tasks that we all take for granted,  he very rarely even gets frustrated,  so for us to ignore this reaction is a very tall task.  Although for the greater good, maybe, he just doesn't want to hear? It is interesting that, with all his differences, and all his disabilities, that he has chosen this… his hearing to be the first upsetting factor.  it is probably one of the only ones that we can actually fix for him! 

Kent and I thought that we needed more guidance regarding this, and upon discussion which his school, they too could use more guidance upon Tobys actual condition and different ways to help get the best out of him. so we have decided a visit to the RIDB centre in Sydney would be worth while. we video conference with a speech therapist from there once a week for a therapy session, but a Trip to the centre would provide a full assessment, including medical, physiotherapy, speech therapy, occupational therapy, ophthalmological assessment, and psychological assessment. it could give us a good map for the next few moths to help lay good foundations for early next year in prep and beyond. This trip is a must.   So next week we will be bound for Sydney, to help us answer some uninsured questions and to help us deal with the many hard days with Toby to come, as he learns to accept his different abilities and the many differences between himself and his class mates. heartbreaking as it is, we are thankful that we have the help of a fully prepared team, who are there just to help us as we need. despite a few teething issues, they are all there to help us on this journey. Without them we would be lost.