Parents:
Graeme and Bianca Birdsey
Profession:
Both Medical doctors
Age of parents:
Both 35
Children's name:
Hadassah and Tahlita (Twins) and Eden
Age: Twins - 6 years and Eden is 3 years.
Are these your only child?
Yes.
Diagnosis of children:
All three of our children have a bilateral (both sides), severe to profound hearing loss, we think of a genetic origin although no family history of note, and we think of a progressive nature. (basically they are deaf).
What are the biggest challenges facing your children on a daily basis?
The greatest challenge initially was just learning to communicate. If you don’t have language, which is the reality that deaf children find themselves in, you can’t bond properly with your loved ones, you can’t discuss the little things about every day life, never mind the big meaningful things, you can’t think for yourself or actively participate in your world. Language is critical for engaging with your family members. As children get a bit older, the lack of language creates so much frustration due to the inability to communicate or be understood that the child can start behaving badly, all adding to the daily challenge...
In the beginning - we did all we humanly could to learn language - our family chose to learn sign language, and that proved to be a good fit for our girls. With intensive intervention strategies, our girls have caught up their, almost 3 year, language delay.
Finances: what comes free and easy to most, costs us everything. We have always worked really hard, and have to pull extra hour shifts to just get the ordinary stuff - access to sound and an equal education.
But hey, they are so worth it!
Communication with others is a challenge for them: we as parents often serve as interpreters to friends, family and people they meet. It’s tough sometimes, being different, but my kids are beyond blessed in having each other, as they are not alone in their differences, in fact, being deaf is “normal” to them.
Being understood: And here i mean as a family, as a whole. The deaf world has a crazy amount of politics...some people think that hearing and talking is the be all and end all, and others see sign language as an absolute must...a parent finds themselves trapped in the storm of opinions out there, often feeling very judged, when in actual fact you are doing everything possible to make the best choices for your family and unique child/children. Who says we can’t have it all?!
Education: we want our kids to be the best version of themselves, their education is a part of that. Currently, deaf kids who use sign language (bilingual children) have not really been offered an equal education to their hearing peers. Mainstream environments do not support sign language at all, so we really don’t have much to choose from, this is an extremely stressful reality for a parent who doesn’t want to settle for second best.
Access: this looks different for different disabilities, and for deafness, access is very poor in SA. Deaf kids can’t enjoy movies as there are no open captioned showings, deaf kids are excluded from a bunch or every day things due to inadequate access.
As a parent - with three different kids...the reality of it all can be quite all-consuming. Something that I hadn’t given a second thought to just 4 years ago, has become the theme about my everything, and at times one almost feels as if you’ve lost yourself. That’s an important reminder to check in with a mentor or friend who has journeyed similarly. I have gained so much from this journey, but certainly do get tired and definitely have days when it feels overwhelming.
What are the happiest moments you have with your children on a daily basis?
Waking up is awesome, as we snuggle and cuddle in lala land for a few minutes. Chatting about different things over dinner is great - something I never thought was possible, but is happening in a very real way. I love reading to them - they love books!! And I love chatting about the stuff that matters to us, and discussing their dreams and things that matter to them, thoughts and ideas that have not yet been influenced or touched but anyone else.
Are you a single parent or married?
Married
Have your special needs children had an effect on your marriage?
Definitely! I think marriages start off well, ours certainly did, with the best intentions of having one’s priorities straight. Kids came along and skewed that, add special needs to the mix and everything about the special need becomes the full constant focus. It requires real effort to not forget about one’s spouse. We are definitely at a place where my husband and I understand and know each other better, this journey has showed all aspects of ourselves to each other. Communication is key, and we make a point to connect daily and have weekly dedicated time to each other. We’ve also started a marriage course to help remind ourselves of some of the important things that we sometimes forget about.
What have your children taught you about yourself, both positively and negatively?
In a nutshell, this journey has shown me that I had most things messed up - A big lesson was realising that “different” doesn’t mean “broken. I also realised that I probably would have missed a whole lot of important stuff had my life unfolded according to our carefully thought out plans (seriously, my husband and I had an extremely detailed 5 and 10 year plan, which proved to be a huge waste of time when it all hit the fan.) Stuff like what really is real meaningful communication, little details of life that I now realize aren’t all that little...education and what I really want that to mean for my kids. Feelings around grief and disability that use to make me feel comfortable as a doctor, before I had children. This journey with our daughters has taught me to stop and listen, to consider what matters most. I have become more comfortable in sharing my own and engaging with another’s pain and triumphs. My girls have taught me more than any text book ever could. They’ve taught me that “different” can really be beautiful! They’ve taught me that comfort zones are totally overrated!
Are your family and friends supportive?
Very, we’ve been exceptionally blessed by supportive family and special friends. Our circle of friends has grown, through a global network of parents with deaf children, I now have friends in many different countries and have met people who are journeying similarly. Our reality sets the tone for friendships that aren’t superficial, which is what I’m after. I’ve met people and bonded with some that will have brought meaning to our lives- what an enormous add to our new world!
The journey of raising our daughters got me starting a parent support group called THRIVE. This is about parents understanding what its like and collectively figuring out how to make the journey better for each other. www.thrivesa.org.za
Do you take time out, if so what do you do to relax?
Hehe - is that possible??
It’s more about snatching an hour here or there to do the stuff that tops me up rather than chunks of time spent by myself. For me, that translates into writing and photography, capturing experiences and emotions with words and pictures, I find this very cathartic. I write a blog that has several thousand viewers about our journey (www.biancabirdsey.wordpress.com), and am in the process of writing a kiddies book series about a deaf girl - exploring issues around diversity. When I do get time away from the girls on work trips, I miss them, they contribute to my ideas and creativity. They are perfect, gentle yet honest critics. They are my inspiration!
What has made the biggest difference to your child’s quality of life?
LANGUAGE!! We’d be no where without communication and language, thereafter, knowing that they are loved just the way that they are, that they are on a special journey of purpose and knowing that they are worth fighting for, have been constant declarations over their lives. HI HOPES Early Intervention Programme, which I am now the National Coordinator of, was the first thing that gave me a glimpse of hope and a real direction in learning to communicate with my girls and seeing them develop language. I remember Professor Claudine Storbeck, reassuring me and saying - “I think we can do this parenting deaf kids thing.” Hope can change everything.
What is your dream for your child?
That they know that they are LOVED, that they love and serve others, that they be the best version of themselves that they were created to be. That we as a family have awesome relationships, and see time spent together as treasured. That we be each other’s greatest cheer leaders. That they know God intimately as a friend and Father.
