Mom to 3 Incredibles. FCEI Africa 2017 talk – bringing things together.

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 takesyou’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)

Broken Escalator

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.

BwAwwa8IAAAdPtc

Advertisements

“I want to be…” Campaign. Saying “Yes” to dreams!

“Mom, when I’m big, I want to be a Vet. I want to help animals,” she signed, eyes gleaming as heart and head agreed on a dream.

In the split seconds between an assuring smile, careful nod and encouraging hug, I couldn’t help debating whether to interject her little dream with a suggestion that yes, she could help animals…she could volunteer at the SPCA, or maybe we could adopt a zoo?  Was it ok for me to affirm her actual dream or even dare encourage it, when as it stands in my country for kids like her, that’s pretty much an impossibility? What do you say to your kid? “Sorry Honey, Deaf kids can’t become Vets, or Doctors, or Scientists, or Engineers or well, anything that needs Physical Science as a school subject?  Maybe think of something else?” Imagine choosing to just pretend for that moment, that becoming a Vet for a Deaf Bilingual child was possible, just to keep that toothless smile bright and excited, and protect that little heart from prematurely discovering the overwhelming reality.

Sure kids dream of being princesses in castles, super heroes, astronauts and other things that only very few might ever be able to experience, and yes, they even have the freedom to change their adventurous minds fifty million times if they want to. The joy of endless possibilities!

And whilst I’m the first person to appreciate that joy, contentment and “success” need not come from any clichéd career, I still think having the freedom to dream, and ultimately choose how to spend your life, is important.

You know what?  Those sensitive hands and heart, would make one hang of a Vet or even a compassionate Psychologist! That enquiring and creative mind would be an exceptional Scientist, Inventor or Leader for that matter. That astute vision and attention to detail – the making of an incredible Designer or world class Architect. The sharp sense of smell and taste – a recipe for a MasterChef!

So, what is limiting our Deaf children? What is snuffing out their dreams for their future?

Early Identification and Early Intervention are critical. Time missed here is critical time lost. This reality is true for most developing nations – that’s the bulk of Deaf children!

Then, the ugly truths of the unequal education opportunities, aren’t often enough declared nor honestly discussed. The fattest elephant is in this room!  Where can my child learn Physical Science? There is not one school where she can access, and I mean truly ACCESS this subject! According to statistics, Deaf children in my country, will leave school with English literacy levels equal to that of a typical primary school child. There’s no chance there of the Psychology degree, nor really anything that will require independent reading for comprehension and study.

It would be so great if more people said that this reality, was not okay. That little Deaf people should have, “I want to become…” dreams too. That moms and dads all over the world wouldn’t need to shatter those dreams early to avoid disappointment later.

Feeling compelled to share the truth and advocate for change, I roped in an incredibly talented friend of mine, Julie Smith-Belton, who helped me created images of a “I am Deaf, and I want to be…” campaign. Why? Because being Deaf shouldn’t mean that you can’t dream. It shouldn’t mean that you are discriminated against through inequity. It shouldn’t mean that broken systems dictate your future. Being Deaf should exclaim, “I’m different and unique, and I CAN!”

Julie, thank you for sharing your talent with us and for us! Deaf kids out there – you’ve been made with special gifts and for a special purpose- let those little lights of yours shine bright! You CAN!   Parents – NEVER settle for 2nd best; comfort zones are overrated!  Government – you are losing out on an incredible resource – the gift of our Deaf people in every arena.

vet

scientist

psychologist2

chef copy

Inventor

Architect fashion designer2Managing Director

Happiness is : celebrating the contents of everyone’s basket

I’ve said it before that this journey is not only about the development, advocacy, challenges and uniqueness of each of my girls alone, but there is a parallel journey of “self” for parents themselves.  An Easter egg hunt the other day, helped me to reflect on my “parallel” as a parent.

The girls had enjoyed crafting paper mache Easter baskets for their much anticipated school Easter egg hunt. I had the fun of playing Easter Bunny, as I was tasked with hiding a few decedent treats each, in the untamed garden. Once perched in subtle nooks and crannies, I called the girls, eager to capture a few photos of the fun. There were some ground rules that were explained, but kids being kids…these were soon forgotten, as excited little bodies trotted off clutching their new baskets. Squeals and shouts, furiously waving hands and extreme expressions declared the acquisition of each find. It didn’t take long though, before this fun activity saw excitement turn to disappointment, jealousy and frustration, as eager eyes compared the finds of each other’s baskets. I’d hidden a few marshmallow eggs each, a trio of tin foil-wrapped white eggs (my fave!) and a bigger bunny for each little hunter. In spite of already having a fair collection each, panic struck as the possibility that a friend may have more than themselves, was considered. I gathered the troop and inspected each basket. They were all relieved to see that they pretty much had the same little pile of glistening eggs. We had agreed that they’d have the loot split equally when back at school, anyway.

Well…they were NEARLY equal. A teary Tahlita expressed that she did not have a chocolate bunny. In that instant, my usual sharp memory failed me, as I could not recall the 5 little hiding spots for the 5 bunnies. How hard is it to remember 5 spots?! What started off as an individual hunt for the hidden spoils, became a team search party for the missing bunny! After 10 minutes of me feeling like an idiot for failing a fairly simple task, we heard a hysterically excited Eden declaring her successful rescue. The rebellious vines that shelter the garden path had hidden it well. Everyone cheered and hugged Tahlita, as the golden rabbit was handed over by her sister. There was a calm sense of contentment all round.

Apart from the sugar high that soon followed, we had an amazing opportunity to discuss some of the very real and tricky lessons that were learned and experienced, outside of the chocolatey kind. Again, ever grateful for the language that enables me to get to the heart of the matter, we discussed what had brought the satisfying joy. One by one, they reflected on their feelings of when they thought that someone else was “winning,” and considered how their actions made the other person feel. A great Theory of Mind development opportunity. The resounding conclusion, was that it felt fun and happy when they were all helping Tahlita find her chocolate bunny. The sense of “team” when they were no longer comparing, brought them all joy and contentment.

Whilst being the “adult” in facilitating this life lesson with my three, I couldn’t help feeling somewhat convicted of sometimes where I’ve lost the joy in the hunt for the prize, because of the distractions of everyone else’s journey…and selfishly so.

Every parent is on a journey, whether their child is hearing or deaf, special needs or typically abled. Every single parent will face challenges, feel inapt at times, have victories of various forms, and make mistakes. It becomes a lonely journey when we are comparing our “winnings” with the mom next door, instead of enjoying the moment of something very special…something not an obligatory right, but rather a gracious blessing.

For those of us with deaf kids, there are areas of hyped intensity and times where we feel like everyone is looking to see whether we are doing a good enough job. Erroneously, it’s the no-further-questions-asked outcomes that are observed, that make that judgement call on the effort of the individual parent. Comparisons are made across a range of very different children, rather than vertically along one single meandering journey. “That child speaks so clearly, wow that mom did a great job! Gosh, my daughter doesn’t, does than mean I’m not a good enough mom?…What does that mean for her future?” … and the panic sets in. Or “Phew, he is doing so well at school, what amazing parents he must have!” Every little kiddo that we have been gifted with, has their own story. And sometimes we get so caught up with comparing notes with the family next door, that the joy of the moment, the treasures that we claim along the way, are not even noticed, let alone appreciated.

Our rewards, “wins” and special moments look different on different journeys, how can they not when we are parenting extraordinarily different children? Wouldn’t it also be a sad day, when we felt that we couldn’t share our victories with each other, in an effort to not seem to “boast” about them, or that someone else may feel bad for not having that particular one in their basket? It’s simple human nature to not like the feeling of being left out. When we are struggling along, and other people seem to be winning…their kid is doing well at school, receiving awards in sport that they participate in, or even just being able to participate in a sport, speaking more clearly…or just doing something that feels out of reach for my child in her “now”, phew, it is a struggle to feel contented with my child’s victories…it’s a struggle against that “I have no chocolate bunny in my basket” feeling. It’s a struggle to even see the other 10 shiny spoils that are piled high for my enjoyment.

In leading a parent support group for parents with kids who have a hearing loss, in South Africa, I’ve tasted the joy of community. I’ve experience that exhilaration in sharing with the joys and victories of fellow parents journeying similarly yet very differently. My joys have been multiplied as a result, joys that my journey would never have led me to. I do have to keep myself in check every now and then when panic sets in. My child’s unique journey is precious and priceless, and I really do want to enjoy as much of it as possible, appreciate what I can and celebrate at every opportunity. Choosing to appreciate the simple things, is part of that.

Issues around unequal opportunities, inequity and discrimination are a completely different matters altogether. An established community of people who are able to celebrate in the uniqueness of a fellow family’s child and journey, yet stand united on common challenges and obstacles, is a potent and powerful combination.

Let’s marvel at our fellows as they rejoice over treasured moments and new developments, personal achievements and celebrations, because if we do, we’ll double our joy and contentment and realize, phew, I already have the prize and my basket sure is full!

In Parallel

So often on the journey of raising special needs kids, we get wrapped up in their progress, their process, their needs, their difficulties and their victories.

Much of the time, people only see the sacrifices, the challenges, and the struggles that allow the child to be invested in and loved on. Whilst these are very real, this journey is definitely not a one-sided-only gain. Whilst I appreciate the will of others to understand me, the kindness behind the empathy…there is no need to pity me.

The day of identification, reminds us that we are fragile. Fragility is both beautiful and painful, and allows the barren callus, which we have grown to protect our emotions, to be cracked and broken. It allows for softening and newness.

The times of needing and accepting help, engage moments of uncomfortable vulnerability. I so clearly remember the night when I called my mentor for the first time…that evening changed my life. As I plugged her cell number into my phone, I hesitated.  “She’s a professor, what if I’m judged for missing the fact that they are deaf, for leaving it so late?” I knew I needed help, and dared to be vulnerable. Embracing vulnerability, allowed me to be embraced in return, by Hope.

Being caught in the eye of the communication choice storm howling around me – opinions and voices determined that their opposites were true. I learned discernment as I weighed up the pros and cons, whilst following my girls.

When I said the word D-E-A-F for the first time and met other Deaf people, I looked fear in the eyes. The heaviness inside me eased, as I allowed myself to lift my gaze and see what it actually meant to be Deaf. I was forced to be courageous, and discovered a wonderful brave new world.

As colleagues in medicine immediately asked me about my faulty genetics when I mentioned my girls, as if I carry something very flawed and unfortunate, I learned that not everything I had been taught had been true. I discovered the power of words, the flaws of text books and the strength of empathy.

As first signs emerged, and we communicated for the first time about wet shoes, I discovered myself being able to celebrate the ordinary. There is continuous joy in celebrating the frequency of ordinary.

As I laid down my career dreams, and embraced the privilege of mothering the Deaf, I tasted what it meant to let go for the first time. Not being in control looked a lot like freedom.

When I woke up on days where I didn’t want to crawl out of my comforting bed, I learned that I could hide in a Secret Place, one where the serenity of Hope and Peace has been a soothing balm to any inner hurt.

As I began enjoying the world discovering my girls, I found a joy, unlike anything I’ve tasted before. A joy that says, “It’s okay to be different, hey, it’s even quite beautiful.”

As I sat on the bench, watching her being chosen last for the team amongst hearing peers, I felt pain unlike any other. Pain that reminded me that I was alive, and breathing and feeling.

As I was told to accept the ordinary, as anything more was just too hard to fight for, I discovered that I was strong, tenacious and determined.

As I’ve focused on communicating, I’ve discovered that extracting the inner thoughts of that little person, and understanding what’s in their heart, is something easily missed by the average parent of the average hearing child. Having to listen carefully to those hands, expressions and vocalizations, has been completely enabling.

As I’ve scrutinized education options, studied policies and sought out those that know better, I’ve found so many weaknesses in a system, that I likely would have otherwise trusted.

As I meet barrier after barrier, and brainstorm ways through these, I’m learning to become resilient.

As discrimination and bias fill me with hateful rage, I am reminded that I am flawed, in continuous need of Grace, and challenged to re-mould the anger, into helpful strategy.

Engaging intimately with friends journeying similarly, has allowed me to encounter the life outside of the fakeness of Facebook. One that screams, “This is really hard, but you are not alone!” Instagram smiles and Facebook ‘likes’, cannot compare to the richness of just being real.

Whilst challenges are faced, and joys interject, whilst systems are fought, and quite frankly, people are offended by my persistence in wanting more for my girls, I’m forced to face my insecurities, forced to leap out of the comfort zone, forced to venture into uncharted territories and invited to trust…continuously reminded of my need for Grace and my utter dependence on Faith.

And when that sweet breath warms my cheek as we do butterfly kisses, I know what it is to love unconditionally.

I have received gifts that no money can buy. Gifts that aren’t visible or tangible. Gifts that are immeasurable. So whilst I give and sacrifice and help and serve, I am being blessed beyond measure on a parallel experience curve of my own. To die to one’s preconceptions, meticulous planning, imitation dreams and plastic comparisons…is simply, to gain.

Braving Inconvenience

People like being comfortable; “ordinary” doesn’t challenge, it pacifies. Most people like being liked, and actually want to be liked.

An aspect of raising special needs kids, which I am not loving, is the feeling that you are always asking for special favours. Everywhere you go, every club the child joins, every IEP, every assessment; in the spirit of inclusion (and here I mean true inclusion), asking for accommodations, extra understanding and special favours is part of everyday life.  Slowly but surely, you start irritating people and even become an inconvenience to them. You start carrying the perception of being a “difficult mom”, and even perhaps get slapped with the label of being “overprotective”. You start becoming disliked.

Feeling like you are a consistent pain in the butt, is burdensome for parents. The spotlight shines brightly on us as it is, simply by parenting and figuring out these “different” kids of ours.  This is one of the greatest adventures we will ever find ourselves on, but one not without blood, sweat and tears.

No one likes to be an inconvenience to others. Actively parenting deaf or hard of hearing kids, is going to need you to get comfortable with being less than popular.

The soccer coach who you asked to learn sign language to communicate with your child on the field, might find that an inconvenience. Pluck yourself up, walk across that field and offer to teach him a few signs and send him resources to help him learn. Might that feel awkward. Yep, it might, do it anyway.

The teacher in the mainstream school who speaks into her whiteboard as she teaches. Ask her not to. Explain that your child needs to optimize every opportunity to access, so needs to see her lips and not have any sound muffled.  Hey, she might find adapting her teaching style slightly, as an inconvenience. Ask her anyway.

The cinema that never has any films captioned. Ask the ticket salesman to call the manager. That might inconvenience the man behind the counter. Ask him anyway. When the manager arrives, discuss options of having captioned viewings. “Who are you who dares to ask?” I hear you wonder. You are a parent of someone extraordinary, with the task of journeying courageously. Overcome your insecurity, and ask anyway.

School IEPs; some schools do these well, others no so much. Does it feel fun to challenge areas that need improvement, or request learning approaches that best fit your child? Hell, no, it’s uncomfortable, it screams, INCONVENIENCE! Take a deep breath, and ask anyway.

The lecturer who you want to ask to wear an FM system for your child. You find their qualifications and level of education intimidating…you’re just a mom, what gives you the right to ask? Inconvenience, maybe? Swallow your pride, and ask anyway!

The doctor for whom you have a list of burning questions about your child. You don’t want to waste his time? Might taking the time to alleviate some of your fears be an inconvenience? Some may think so. Open up that list of questions, anyway.

The church choir that has started preparing for the Christmas service. Have you considered asking them to learn and prepare one carol in sign? No? What if they see it as an inconvenience and decline the request? Consider Who perceives your child as fearfully and wonderfully made, and ask anyway.

The thing is, advocating for our kids, even in little ways, is not something we should apologize for. Through advocating for them, we show them that we think they are important, that their feelings matter… that they matter. We model viewing inconvenience as part of everyday life, as part of learning and adventuring,  so that when they are independent, they can ask for themselves.

I’m slowly starting to care less about conveniencing everyone else, and more about seeing that my child can be their best and know that they belong. Knowing that they are worth asking for and fighting for, and realizing that they do not need to feel bad for needing any additional accommodations. They are worth my feeling awkward and uncomfortable; they are worth someone else’s inconvenience.

Sometimes a “special favour” or request is received with enthusiasm at the thought of making a difference, to include and embrace diversity. There are people who truly want to help and go the extra mile. Words, cannot express how a parent’s heart dances when moments like these surprise you. You are the angels who we appreciate more than you could possibly know. Thank you for seeing the heart behind the request; the nervous voice or apologetic tone.  Thank you for placing my child’s needs before your own convenience, and deciding to accommodate her, anyway.

When accommodations are made, be thankful, express gratitude sincerely. Share these stories with others, to motivate and inspire them. Support clubs and people who embrace accommodations. Write letters of thanks and recommendation, to community papers and social forums.

The very next time you need to ask for some kind of accommodation, some kind of adjustment to plans, remember the precious person whose voice you represent. Lift that chin up, shoulders back, frown lines straightened, with a smile on your face.  Don’t expect the worst, ask confidently and unapologetically. Graciously receive assistance, and remember that there are other moms and dads also walking across that field, through that classroom, into that office…daring to inconvenience.

Just Keep Swimming

dory

The girls love going to the movies. I’m not sure which part they find more exciting; watching the actual movie or getting their slush puppy and popcorn combo. Our seating arrangement is key; aisle – child – mom – child – child – dad. This way, there is a child next to a set of hands that can do some explaining, whilst maximizing the ray of light from the wall adjacent to the aisle. Maximal light to enable mom (and dad) to interpret, as not to miss what the un-lipreadable animated characters are saying.

Animated films these days are fabulous, even as an adult, I could thoroughly enjoy being drawn into the plot and quite easily fall in love with one of the cute characters. That’s not an option, currently, as our mission in the cinema, is to see our girls enjoy and understand. There is always a fair amount of post-movie reflection when we are back home, to fill in any gaps or elaborate on some of the “morals of the story.” As they get older, we’ll advocate for captioned showings, and perhaps have access to FM technology too.

Movie time is fun, I love seeing them giggle at parts, that from the evident silence from the surrounding seats, no one else found funny – animation subtleties that produces a funny facial expression or silly gesture. They are also well aware of when they may have missed something, so I’m ready for the enthusiastic arm tapping which is my prompt to “rewind” and explain fast enough, as not to miss future events whilst settling the understanding of the past events.

A few weeks ago, the school holiday treat of Sunday afternoon family movie, had arrived. The girls, torn between the movie posters at the ticket counter and the snack menu across the cinema hall, were debating between a few options. “The blue fish movie, Mom,” pleaded Eden. “Finding Dory,”( or Dor-ree, as we cue it) was the decision.

Prepared to view superficially, and be available to interpret and explain, pass popcorn and clean sticky fingers, I wasn’t expecting that I would connect with the story. Now, if you haven’t watched the movie and intend on doing so, stop reading, watch and come back to this. I’d hate to be a spoiler!

Dory is a fish who has a chronic condition of “short term memory loss”. She’s a special needs child-fish, if you like. She loses her family, and essentially starts a journey of discovering who she is. It reveals how her parents really loved her, how they were so proud of her, and when they lost her, they gave up their little fish-lives, made themselves vulnerable, and devoted themselves to finding her. Not by convectional means of searching and searching, but rather “following” Dory – in essence, a journey of patiently waiting for Dory to find herself.

Their little forgetful daughter had a love of following trails of clam shells. Something her parents had taught her, to help her find her way home, should she forget. Something that they knew, worked for her. Over the years of having lost their little blue and yellow precious, they devoted their lives to laying shell trails in every direction possible, in the hope that, what once worked for Dory, would lead her home.

Yes, this probably seems ridiculous; a grown woman reflecting on a cartoon about a forgetful lost fish!

Whilst engrossed in the home coming scene, a little hand prodded my arm, “Mom what happened now? Mom? Mom why are you…crying?” Mom was captivated by the special-needs-family metaphor.

Special needs parents have two choices. Give up, or give it your all. Those of us who opt to give it our everything, will lay down our lives for our kids, we’ll figure out what works for them, what will “lead them home”. What will help them to find who they are – who they were made to be? Special needs parents get tired, they are worried a LOT of the time, but their hearts burst with love and pride for the little people who have changed their everything. Special needs parents who choose to be committed, are choosing a life of perseverance. A life that requires them to practice patience, a life that often challenges their very weaknesses. It is often uncomfortable, and sometimes really hard. But it can be, and often is, quite beautiful. Special needs parents understand the meaning of…the need to “just keep swimming.”

Finding Hadassah…what will that story tell? What will I need to give up, embrace and fight for, to see Tahlita and Eden discover who they were meant to be and how they will get there? It will require me to surrender my dreams AND fears..and TRUST. Trusting, when everything seems unknown, when there are many barriers and battles still to overcome. Trusting, I think this is one of the hardest things that I find about this journey. But trust I do, not because I have things figured out nor because I feel brave (since most of the time I don’t, really). Trust because I choose to. Trust because I know the One who wrote this story.

My girls, and our journey of discovering how best to parent them, and then being part of their individual journeys of discovering who they were made to be…how they want to “be” deaf, is giving me the space to savour the things about parenting, that I think I may have otherwise overlooked. One of the most interesting aspects of “finding” my three, is that, If I allow it, I get to “find” myself a little more each day too.

Just as you are.

IMG_1061

The thing with raising special needs kids in a time that defines success by the car you drive or the label on your purse, is a constant struggle between the the burn to see the “who” they want to be and the “what” they want to do with their lives, shut the mouths of those who ever doubted…versus living authentically, the life that I truly value, which is one that says, “Who cares what everyone else thinks? Be YOU, be free.”

I’m the girl, who, when I get told, “you can’t”, accept it as a challenge, to prove that indeed, I will. Having three kids who are labeled as “disabled” stirs the same determination to see my three prove the world wrong about deafness, about disability, and about the need to be like everyone else.  This journey has humbled me though, in ways I less anticipated. I’ve scrutinized the labels of ‘beauty’, ‘worth’, ‘wholeness’, ‘ablility’ and many more, and breathed in the very breeze that whispers, “You’ve had it all wrong.”

This journey, this early on, has found me torn between being willing to fight and push and do whatever it takes to see my three be offered opportunities equal to that of their hearing peers. On the other side I err, hoping that I am not tarnishing their sweet unique essence by the culture of conformity and modern day perception of success. Whilst with care, we could move forward navigating what works for one, the real challenge is protecting this delicate balance simultaneously with three very different girls.

When does the struggle to see them have access to subjects like Physical Science (not a subject accessibly to any child in a school for the Deaf in South Africa, and no mainstream school readily accommodates South African Sign Language) compete with one or more of my daughters’ acceptance of the possibility that she was not made to pursue any future that requires Science? For some reason I find myself wrestling my own world view; that to be successful, one needs to pursue a career that epitomizes “success”. Why are these old rags of deception so hard to shrug off?

I want to be the mom that says, “Follow your heart, be what you want, don’t think about money, or even proving anyone wrong.” But especially when everyone is watching (well at times, it sure feels that way) a mom can’t help wanting their child to shine.

But what if their stage is not the same one you have the front row ticket for?

Whilst we struggle to read and spell, yes they are only five (see I struggle not to have to justify this). Whilst we may struggle in areas of literacy development (let’s not pretend that it’s not going to be harder for a profoundly deaf kid) I find myself sometimes feeling the weight of this journey.  Whilst friends with hearing kids say things like, “After a few months, everything clicks and they are just reading and reading.” I’m like, “I’ll dance with joy when we reach that place.” Reach it we will, but with a late identification at the age of three, it will be harder, it IS harder. I teach my kids that they can do anything, not because I want them to prove that they can do anything, but because I don’t want their own thoughts about themselves to be their shackle.

So I take two steps back, and “imagine the worst”. Imagine they don’t get great grades at school. Imagine that their literacy is fine but not brilliant. Imagine that they don’t earn massive salaries or have many letters depicting several degrees behind their name. Oh, Deaf people sure can do all of that, but let’s imagine that mine don’t.

If I am sitting at the edge of my chair in the front row of the story of “success” as defined by this world, I might be disappointed. But if my time and energy is spent on having them see that they are loved beyond measure in the now…the place where they don’t speak eloquently, the place where they get 2 out of ten for a spelling test, the place where they read “purple” as “pink” (10 seconds after I have made the letters P-I-N-K take the shape of a crimson friendly pig to aid memory), the place of not yet having “made it” in the eyes of the world…if in this space of perfect imperfection, they believe that they are complete and more than enough just the way that they are, they will see mom standing in applause, at the core of who they are and not what they do, or how they perform…a place of truth and sincere contentment for all.

I want THAT.

I couldn’t care less about how orally eloquent they become. I want them to know that they are loved. I don’t need them to make us prove to the word that “Deaf people can”. They have nothing to prove, they are enough at this very moment. It doesn’t matter if the “experts” are sizing up the choices that I’ve made for them. What matters is that they are happy and at peace with themselves. It matters that we enjoy each other, that there are no empty spaces deep inside. We complicate life so much by sticking our tacky labels of approval onto things based on the ordinary norms of today.

This certainly does not only apply to deaf children, hearing kids are continuously told that who they are is not enough. The plastic values of society, leave us chasing the things that don’t matter at the expense of cherishing the now. Having being privileged with the task of mothering kids who have shaken everything in me, I have had to reevaluate everything that I thought to be true.

Girls, if you want to study Science, I’m willing to sweat it out with you. May you know though, that nothing you do, nor achieve, not a single word you might say clearly or discriminate precisely, not a single grade you may or may not make, will ever change these 4 facts…

You are worth fighting for.

 You are complete. Spread your wings, but not to impress anyone or prove anyone wrong; do it for you, and the One who moulded each feather.

 You are loved …I celebrate you in exquisite completeness of the “who” you are, NOW.

 You are accepted and crowned with unique magnificent purpose by the One who thought you were worth dying for, long before anything you said, signed or did was “worth” applause.