Feeling unsure? It's okay to go with your gut...

For many hearing parents at the very beginning of this journey - their baby is the first deaf or hard-of-hearing person they've ever met. 

I still remember it.   

The overwhelm. The absolute raw vulnerability. The utter confusion at what we've just been told. 

Those first few months after finding out your child has a hearing loss can feel incredibly immense. The navigation of a new world whilst trying to process the feelings of shock and grief and uncertainty, is a lot to juggle... 

And on top of that, it's expected that from the moment we find out, we have to immediately take on an advocacy role. To be discerning and evaluative of every piece of advice we're given. We're asked to make dozens of decisions based on literally no prior knowledge at all, which have the power to determine the rest of our child's life with one tick of a checkbox. 

Like I said... it's a lot. 

It can honestly feel as if we're at the complete mercy of the professionals who have been given our child's case and because there's just this desperation in that moment, we accept their advice as truth, without ever questioning the bias or agendas that might be at play... Even when we find ourselves sitting in a room, a sinking feeling building in our stomach, as we're told (not asked) what decision we should be making for our child.  It could just be a subtle niggle. A lump in the throat. Telling us that something isn't quite right. That maybe we need to seek a second opinion or do our own research when looking at what supports are out there. 

Because unfortunately in the system, everyone has an agenda.

Everyone has something they are trying to achieve or obtain when working with our children. Whether that agenda aligns positively with the long-term outcomes of our deaf / hard of hearing child or not - is the question we need to be asking ourselves as parents. 

Here's a story for you. 

Recently I was at an appointment with Frank (my Deaf son) where we waited over an hour to see a particular specialist - yet the appointment went for - no word of a lie - approximately 2 minutes. In that small window of time, this specialist informed me that Frank was severely speech delayed and that cochlear implantation may need to be considered in the future. 

Now, let me make something clear... 

For any parent receiving that information - it would've hit hard. For a split second, even I felt it... But thankfully (for me), I have the experience and knowledge to know better, so I left that appointment with only one thing on my mind. It was the last time I'd ever be seeing that specialist. And here's why.

To make an assessment on a child speech without formal evaluation and after only interacting with the child for less than a minute full stop is unprofessional and unacceptable. No one, not even a qualified and experienced speech pathologist would ever make an assessment like that let alone voice it to the parent without first evaluating an understanding that child in its entirety.

Secondly, Frank is moderately-severe. Very rarely would anyone implant a moderately severe deaf child unless they had significant conductive fluid and additional issues that we're bringing the hearing levels down to receive the severe profound level. Yes Frankie's had bouts of this, but he is clear and his speech is flourishing, so to even mention implantation at this point in time makes absolutely no sense.

This experience is not the first and it will not be the last that I have to endure as a parent of a deaf child, but for those parents who do not have the experience in the field and a putting their trust in these professionals to guide them with their child’s best interests at heart, experiences like this are extremely scary and make me even more determined to empower parents in the knowledge and understanding that they have of their deaf child. 

Clare x