True blessings abound

Well you know the professionals amongst us choose to work with deaf and hearing impaired kids.

We as the parents of those kids, didn't choose it, it chose us.



Honestly, I'm not any of us were that thrilled with the choices life threw at us in those early days in which we found out things were going to be just a little bit different in our households.



That's the most incredible thing about parenting, when you think you can't cope or you think you can't do it - you look at that dear sweet child who needs you, who depends on you - and whammo suddenly you find a strength you never knew you had. With the strength comes the drive, the passion to do whatever it takes for your child.



A smaller subset of those parents, are beset with the "passing the baton gene". This gene isn't really a gene per se but something that might as well be. That's because it is right at the heart of them, right deep down inside, almost like part of their genetic makeup. These are the parents that see the bigger picture, these are the parents that want to make a difference! BUT not just to their own kids, for all the kids around them and those kids who are yet to come.



These same parents are the ones that are really tired and feel like falling in a heap until someone else who is not so far on the journey, calls or emails and needs some help or support. Forgeting their own state of tiredness, they collectively respond to gently lift that struggling parent back up on to their feet.



These are the same people who see something important, recognise it and put their heads down and their butts up and just go for it.



Jodi, Val and Lydia are 3 such people - they have in 6 days put together the most amazing website.




www.cicircle.org




This website is going to be just the most amazing reference point for parents and professionals alike. It also has a link to CI Circle blog where parents of newly diagnosed kids can come and meet some others who have been there before and know the support they so desire is but an email away - now in this internet age, that is truly a precious, precious thing.








Alongside these 3 go getters are a cast of over 1700 members of the CI Circle discussion list.

It is all about you guys. The list serve was set up for you all and boy have you taken it and turned it into more than Karen & I ever dared to imagine over 10 years ago now.

The group is so unique and special - perhaps a more caring environment than some of our members have in their immediate surroundings. A welcoming place where people "JUST GET IT!"



It truly is a case of no matter what life dishes out, there most definitely are so many blessings around us, and I am so incredibly blessed to have you all in my life.

Point of Perspective

This week provided me with an opportunity to see just how we have come in the 12 years since A lost his hearing after battling meningitis as a 2 year old. Perhaps more accurately how far I personally have come.

As part of trying to help parents, our parent group is reaching out to parents at that time of diagnosis to support them in a way that can only be done by another parent who has been there.

The implementation of screening of the hearing of newborn babies is a great thing. The sooner their hearing loss is identified, the sooner decisions can be made with regard to hearing aids and method or methods of communication to be used with the child. However it seems to me that is also very much a double edged sword. How difficult is it to be the mother of a newborn baby being so unsure of yourself and what to do and questioning whether in fact you can even do it right? Add to this then the news that your child has a hearing loss! In the majority of cases children born with a hearing loss are in fact the children born of hearing parents, parents who by and large have had no exposure to deafness before the birth of their own child.

This week saw me call a parent to see how she was going. Her child was diagnosed as a newborn and she had struggled with that diagnosis. In what seems to be the true characteristic of motherhood she had agonised over what she had done differently in this pregnancy compared to her first, what had she done differently this time "to make her child deaf". Despite the fact it had been some months since that diagnosis, her voice cracked and I could feel her silent tears as she tried to hold it together for my benefit during our call. I tried to reassure that she had done nothing wrong, these things just happen.

As someone who is so much further down this road, it was a real point of perspective to be able to hear her pain and whilst really empathising with her, equally not be swamped by that wave emotion but rather be that shoulder for her to unburden on. I shared with her that it was ok for her to grieve. That is not in anyway to suggest that her child was less than perfect because of his deafness but rather grieve for her plans for her future, she hadn't planned to parent a deaf child. As a hearing person with no prior knowledge of deafness, she sees her son's loss of hearing as a loss and so feels a great sadness at his loss. It wasn't part of her plans for her future or his that she would find herself answering questions from other kids in the playground about hearing aids and what they were for. This notion of grief and the need to allow yourself to feel it, is touched on in that wonderful piece "Welcome to Holland".

Perhaps what struck me most were her assertions that she just wasn't a strong person. I tried to share with her that most of us weren't until faced with raising a child with a hearing loss. It is not that we suddenly had our hearts turned to stone in a sea of bitterness that made us go out into the world strong bitches that would fight the world as soon as look at it. Quite the opposite in fact!

We started this journey but one step at a time. We looked at each decision we had to make by gathering as much information as we could and making our best shot at an informed decision for our kids. Not all of them were going to be right and we might change our minds along the way but none the less they were made with love for our beautiful kids. Around us we found the most amazing support - from caring professionals, from other parents of deaf kids, from our partners, our families, our friends. It didn't make that grief any less, it just helped us gain some perspective.

With each decision we made, or hurdled we climbed over, we grew from the inside out. We took back control and we made it our part in life to support our kids in the best way that we could and that we would be our kid's advocates, for despite the best intentions of the professionals entrusted with the care of kids, they were not necessarily going to be there for the long haul, we as their parents sure were.

For many of us the journey made our hearts softer, more open to the suffering of others. We have become greater champions of social justice, either just in deafness or even in the wider field of special needs. Many too feel a strong sense of the need to give back to others who find themselves where we have walked before them.

My call with this parent, brought back many memories about what an awful place it was that she was in right now. The place of darkness, guilt, fear of the unknown and mostly fear for the future. Oh she loved her son, just as much today as she did on the day he was born, but what she needed to know most was "would he be ok?" Her head had filled with fears about him being teased at school for his hearing aids, or what if his speech wasn't normal, would people tease him, what if he never found a partner, got married?

From my point of perspective 12 years further down the track, it was my privilege to hold out that warm glowing light at the end of the tunnel. Despite her fears for herself and her son, they were both going to be alright. They were both going to grow and learn from this experience and her son was going to be ok. It wasn't going to be an easy, quick fix - no matter what choices they made for him in the future, it was going to require a commitment from them to support their son, but it was a commitment in which they were not alone - there were so many people there to offer them a hand, to help them up on the tough days, to share the greatest of joys on the good days.

I am going to call her again in a short while to touch base and see how she is doing. The thing is right now she doesn't really have a clue of just how strong she is and what she is capable of doing. She has no idea how this experience will change her and her perception of herself and what she can do. So how am I so sure that she will experience and be all these things - because I have also walked that path before too. I have walked the path from fear of the unknown to a quiet strength and resilience in the knowledge that we did make it through the tough times and have come out the other side, not only stronger but much much better human beings, with a real sense of commitment to humanity and supporting all its members.