It has been a dreadfully long time since we last posted here. Life is very busy these days; three children at School and a business to run. I don’t flatter myself that people wait for the latest update on Alice and Ollie but I have felt something of a sense of duty to continue their stories.
I have often wondered when I would stop. I always said it would be at the point Alice caught-up with her hearing peers and, bar the daily charging of batteries and a few other small concessions, her hearing troubles needed no longer be something we talked about. That plan came and went with Ollie… Ollie is, of course, another story but he is ploughing along and never stops talking. Am I bad for wishing he would shut up sometimes?
Lots has happened in the past six months, or so, since we last updated the blog. Alice and Ollie have gone from strength to strength, the sky really is the limit for both of them. They have been the stars of a short film made for a charitable foundation – The October Club – whose support of Auditory Verbal UK has been and will be game-changing in allowing hundreds, if not thousands, more children to access AVT in the UK.
Our Facebook Group has nearly 600 members now from all over the world; a superb community of people who come and go often joining in a time of confusion and despair and then disappearing again as their little-ones take positive steps and life returns to ‘normal’.
And that, my friends from all four corners of the globe, is the crux of it. What is normal; what does it even mean? I have to admit that when we started this adventure all we wanted was for Alice to be ‘normal’ whatever that was. But, of course, Alice is just Alice, the same as Ollie is just Ollie. My beautiful, remarkable, children who fill me with pride and despair all day every day. Perfect children one and all.
Alice’s hearing loss never has and never will define her; doubtless Ollie will follow suit.
So where does that leave us?
Telling the story of two remarkable children who deal with the trials of every day life with the same vim and vigour as every other child. They sing, dance, laugh, cry, shout, scream and bring joy to everyone they meet. You’ll not find a prouder dad than me.
We never set out to offer advice on navigating the crazy world of ANSD. The world is vastly different to the one we joined nearly seven years ago. There is much more information at hand and technology continues to make the world a smaller place. We chose a path for our children and, even through the toughest of moments, our unerring faith that we were doing the right thing helped us get through. What was right for us and what has worked for our children may not be for everyone. We have always valued every different decision that parents make for their babies. All I can say is that Alice and Ollie are proof that there is a bright light at the end of, what can be, a very dark tunnel. It will always be alright in the end whatever the outcome.
Love your ANSD children with all your heart. Choose a path and give it everything you have got. Never take no for an answer and remember, when the chips are down, how much your little ones need you to be strong for them.
I wish you all the best of luck and do stay in touch.
I’m not sure there’s much more to say than that…..
Thank you, from the bottom of my heart – we were those people who were in our darkest moment after our daughter was diagnosed with ANSD when I found your blog. You helped me to see there was light at the end of the tunnel and that this wouldn’t define her and that there was a “normal” for her and our whole family. We are now almost a year and a half into bilateral CI’s and are loving seeing our daughter bloom and grow. You are a beautiful family and I will always be grateful to you for you putting your story out there. Whatever your reason for letting the world into your journey – thank you.
Amy Schultheis (Belmont, NC, USA)
Thank you so much for taking the time to comment. So glad your little one is doing so well too. Humbled that our little story helped so much.
I have just read your recent update & wanted to say thanks for your story! I found your blog when I was desperate for some reassurance that things would get better for our daughter. Grace is 3 next month & one year on since her bilateral implants were switched on. We had a programming appointment yesterday & she is hearing in the range for implant users on all levels & I am just delighted! Now I am just looking forward to the future when I have to tell her to stop asking so many questions which I am sure will happen! Reading how well your children have done gives me hope that she will do whatever she wants to do in life! Thanks again!!!
Thank you for sharing your lives with so many! We all, Deaf & hearing have appreciated your honesty and enthusiasm. Wishing you all lots of love & luck for the future – your children will each fulfil their dreams- as parents; enjoy! X
Thanks so much for sharing your story! My daughter was just diagnosed with ANSD a few weeks ago and she is 4 years old. I was thrilled to find your website and see your journey with Alice and Oliver. We are on the road to getting cochlear implants for our daughter and it has been comforting and heartwarming to see how Alice has thrived with her implants.
I’ve only just discovered your page after trying to understand my 17 month olds condition more in Utbe. I thank you for sharing, I wish I had seen this a year ago or more when I was finally ready to acknowledge that my son had hearing issues. It’s calming to see how other parents Come to accept this.
Thanks for sharing your fantastic story. We discoveried 2 weeks ago my daughter has ansd bilateral and it made my whole family really upset. Trying to find answers, evaluating and testing her every day and imagining further issues that she does not have. Aliceears.com made me see how my daughter can be a normal persoal in everything. No road blocks, no limits because she is normal but needs some aditional assistence and perhaps a CI. Thanks Fabio NY USA
Fabio, thanks for your kind words and sorry you had to find us. Whilst we don’t keep the blog updated anymore I still get many messages like yours. Have you found out Facebook group yet?
Lovely post again and inspirational children. I remember you kindly calling me, when you were on a family holiday and we were in the first few months ost diagnosis, and reassuring me everything would be ok. It was, and our daughter’s language is age appropriate and she’s about to start mainstream school. She’s a happy bundle of energy! Thank you!