Five years ago…in spite of being part of the medical world, this conference would not have automatically drawn my attention. I didn’t understand the impact of hearing loss on the lives of children and families. Four years ago, I could barely say the word D-E-A-F, my ability to think rationally and consider the possibilities that it could mean for me, were all silenced by the enormity of the unknown, and frankly , impossible seeming task that at that time, I did not want any part of.
I was always a person who had taken care to prepare meticulously for anything that was in my power to do so. I remember a moment when my twins were ten days old. Having not closed my eyes for over 48 hours, I stared at myself in the mirror, and without much thought, caught myself saying out loud, “This was a test you couldn’t study for…you haven’t a clue, have you?”
I had no idea then, that three years later, I’d feel an even more deeply, that overwhelming feeling, of being so ill prepared for the most important test of my life – that of parenting. What was Deaf, and where did it come from? There was no time to study up, take a class, or prepare in advance, yet there was a very real sense of panic for the need to already know what to do and how to make up for what seemed then, as my ultimate life failure – that of missing that my children couldn’t hear. I needed to be an expert immediately…in actual fact I needed to be an expert 3 years before…
Let me take a moment to add, that in SA pulling a 24 hour plus work shift…carrying the responsibility of life and death daily at your weakest moments, is a very ordinary reality for a young medical doctor. But when it’s you that the pressure relates to, and when there will never ever be a imagined rest or break or moment to catch your breath as perceived in that moment, it is enormously overwhelming. So whilst it’s the easiest thing to advise a family to have those little cute hearing aids in those ears for all waking hours – until that’s your child, you cannot begin to imagine what that task initially means on an emotional level, never mind the often frustrating practicality.
One year after knowingly becoming a parent of deaf children (as they were deaf all along), I was blessed to attend the FCEI conference in Austria. There I met friends – fellow parents who had done so much for others yet were wearing the t-shirt for their own parenting journey – parents like Snigdha, Bridget and Ann who are with us today. I have to just say that the most impacting thing I experienced then, were the presentations made by successful Deaf adults –that exposure literally exploded grief for me. It got me inspired…
What would it look like to start a parent – led support programme here? What would I need to start that? Two months later myself and my colleague Debra, started THRIVE.
Over the last four years, I’ve often thought that my own journey of figuring out how on earth to parent a deaf child, has so many parallels to initiating and leading a movement of support for others. In my case, this specifically refers to the founding of the parents support group THRIVE and now also being a leader in HI HOPES.
Having now met many parents from around the world, and through my own journey, I’ve come to the understanding, that for a number of reasons, it may very well be a parent who initiates both parent peer support but also other interventions or educational support services – or at least pioneer change in these areas. For the kinds of parents sitting here today, the level of desperation that one reaches out of a synergistic mix of love and fear, as a parent – is enough motivation to move one into action. Unfortunately though, our own insecurities, our own diluted perceptions of ourselves, our perceptions of very real power dynamics out there, which blind us to our own worth and potential, sometimes paralyze us from taking that first step. This doesn’t only apply to parents…but to anyone who has sat in any session over the last three days with a burning sense of purpose to action positive change.
As we pull things together, I’d like to share some of these…as for many of our delegates here, the question is about starting something. Something that would possibly help others that may or may not have a direct benefit to yourself. These are things I have observed, not necessarily strengths of mine, but things I too need to be working on.
- Learning to navigate through the clutter.
As a parent, to start, everything’s messy and confusing!
What brand of hearings aids? Cochlear implant company? Oh CIs are bad? No they aren’t, they are a miracle? She needs to sign? No don’t sign, she might not speak then? Mainstreaming is important… don’t mainstream as her needs are very unique…
You feel like you actually can’t make a right choice. That in itself can be paralyzing. When working with people in the NGO setting I realized that similarly, there really is not one right way of doing things, different models are needed for different environments. Don’t let the fear of making a mistake, stop you from making any decisions. Make the first decision, then the next, and then the next – each one, your best choice in that apparent time. Navigate through that clutter. Flexibility is your friend whether you are a parent or a leader of a movement or organization…embrace it.
- Do things purposefully.
Sounds obvious. I can honestly tell you, that there has been speech therapy homework and occupational therapy homework that I’ve rushed through at the eleventh hour so that professionals won’t think that I’m a bad mom. If you are going to do somethings, do it purposefully, or admit when something simply cannot be done right now. Don’t do things just for the sake of doing things. Sometimes unpleasant administrative tasks are a reality, but whatever you do, be purposeful about it.
- Get comfortable with being uncomfortable.
As a parent You will undoubtedly have to push a little, but most likely a lot, no matter where you are in the world. This really was quite uncomfortable initially, but something you become better at with practice. Ask for help, ask for advice. Change, for most of us is uncomfortable. Ok, so that communication methodology isn’t quite doing it…let me try… or…mmm…this school choice no longer seems to fit, I wonder what my other options are?
On the setting up of support or initiating community support front, it won’t be comfortable looking for funding to start a support group of sorts, there will be lots of little challenges, and a fair number of barriers. Sometimes, simply working with people is not comfortable. How many challenges and barriers do we expect our deaf or hard of hearing children to face? Let’s also lead them by example.
- It’s okay if not everyone likes you.
As a parent, if you chose to do IEP meetings well, I can assure you, that there is a good chance that someone at your child’s school will not like you. What’s more important is that your child is able to reflect of the everything you’ve given to see them be their best, and feels loved it. When you start a form of support…someone may see you as a rival of some kind, a competition to funding, or may have a politically view different to your own…someone won’t like you, and that’s okay! When you advocate for the needs of your child, the needs of a people group as a whole, or encourage others to advocate for their own family – yep that’s a recipe to not being like by all…don’t let that deter you.
- Get a vision.
My vision as a mom, is to have children who are happy, who have good self-esteem and close family relationships and special sound friendships. I’d like to see them be able to dream, and then follow their dreams. There’s a goal…now I can work on the road map. That road map, needs me to stay focused when the going gets tough or when I feel like giving up. Similarly, if initiating EI in your area is the goal – what does that look like? See it…imagine it…think of the details…write them down…have a dream to hold on to because there will be times you feel like giving up. As Snigdha said yesterday – “the dreams of an empowered parent, are those that keep us awake at night.”
- Don’t wait for someone else to do the thing you need done.
Find people who can encourage you, people who have been there, people who believe in you – there are those people in this audience. Then do it…and do it afraid if you have to. But make that first move. Have limited respect for the word “NO”. You may ask for school accommodations, and may be rejected…don’t settle for that “NO”. You may approach authorities regarding EI strategies. At some point someone may tell you that it is not possible. As Nelson Mandela said, “It is always impossible until it is done.”
- Be faithful with the little.
Whether its persevering with that darn hearing aid on day two or three, or replying faithfully to emails within the realm of a support structure you have initiated. Reliability and faithfulness is always rewarded.
- If NOT you then WHO?
As a parent – if I don’t put the hard work in to learn to communicate with my child, who else is going to do it? You may be here over the past three days, thinking how badly change is needed in your setting. Maybe something new is needed, maybe there is nothing at all where you come from. If not you then who? This might mean you need to start something alone, or network and encourage someone who has the means. You are part of a community who can help and support you. Don’t look for excuses; embrace the opportunities…you’re sitting here for a reason!
- You are more than enough.
And in the same breath please know that you really are more than enough. I’m standing here today, because someone told me that when I was starting out. You may need to rally support, and get advice. You may need to strategize with people who have skill sets different to your own, you may need to network…but with perseverance, and a vision, you are more than enough.
Look back at the journeys which have brought you here…can you see your own resilience? Things don’t have to be perfect before they begin.
So whilst the task at hand may feel impossible for some – the idea of initiating ECI in your setting or building in that area further – you actually already have what it takes – you’ve been in training all this time.
So as I close…I’d like to share this little clip. (thanks to Leeanne Seaver who introduced me to it)
Are you waiting for someone to save your situation? Your community? Your family? Do you feel powerless…or can you leave with the encouragement of a time like we have just had… a new membership to a community of FCEI, and walk up the escalator?
It’s an encouragement to take action – in your capacity as a parent, a professional or a pioneer…or a mix. Don’t wait for someone else to do it all for you. It’s hard not to focus on everything that is not ideal, or everything that is absent. Lift your eyes and see the opportunities…the possibilities…the way to more.