10th May 2015
Well, what an amazing week it's been for our family - Our New Ears, Carol Flexer seminar in Dublin, NDCS Understanding Deafness course in Mallusk, Fundraising abseil for Sound Friends in Belfast and then all the other normal family things that continue to happen no matter how busy life gets!
Since so much has happened this week and I have been blogging a lot, I thought I would use tonight as a summary of the week, hope that's ok?!
Monday - day 1 - I started the week thinking back to Princess's diagnosis, how we felt, how we dealt with it and where we found our support
Tuesday - day 2 - some information on hearing aids
Wednesday - day 3 - some information on cochlear implants
Thursday - day 4 - information on sign language and the Deaf community
Friday - day 5 - previously, the highly of my week - the seminar in Dublin with Carol Flexer
Saturday - day 6 - bit of a messy one I feel, info on how we feel now about deafness
Sunday - day 7 - the highlight of my week!
What an appropriate week for us to undertake a fundraising challenge for our local Deaf Children's
Society, Sound Friends (local parents support group of NDCS). Today, 37 wonderful volunteers, abseiled down the Europa Hotel in Belfast, to raise some vital funds and at this present moment the total stands around £5000 with lots more money to be received.
My husband and I decided to take part in this challenge in support of Sound Friends, without whom we would be floundering emotionally and confused with regards to the future of our daughter. The big problem with us signing up, was that we are both terrifyed of heights! Neither of us a able to even stand on a stool without getting nervous, so this was a massive challenge!
Nerves were doing pretty well until we arrived at the hotel and made the mistake of looking up - wow! That's one tall building!
Anyway, we got our good luck messages from our merry band of supporters and headed for our safety briefing, then we were kitted out and onto the roof we went.
The weather improved slightly for us and it stayed dry for a while.
James was really nervous but managed to psych himself up to get "over the edge" and seemed to speed down the side of the building.
For myself, on the other hand, it took a lot of persuasion and negotiation skills from my rope man, to help me take those first few steps. I was terrifyed, in fact, I think now, almost 12 hours later, I am still shaking! My descent was slow and my arms ached cause I was holding onto the ropes so tightly. By the end I was absolutely exhausted and my legs had turned to jelly, I actually finished the abseil by lowering myself onto the ground into a lying down position and lay there with my eyes closed while I was disconnected from the ropes. However, I am very proud of my accomplishment and even prouder of the amounts we managed to raise for Sound Friends.
Tonight, I am thinking back on this week - I am inspired by the things I have learnt, the people I have met and the things I have done.
Learning points:
* your ears are the doorway to your brain
* singing helps your child access both sides of their brain at the same time, whilst also accessing maximum frequency range; also helping to develop competence with rhyme and rhythm - a lot of kids who have problems with literacy, have problems with rhythm
* princess starting to sign more new words, blow kisses and take weight in her legs
* everyday activities can be the best therapy provided they are enriched with quality communication
New people:
* Team from Our New Ears and other people at seminar
* kind volunteers who abseiled with us today
* other parents at the NDCS event
* the lovely man controlling my rope for the abseil who was signing with me as he is learning too
* the deaf role models at the NDCS event
Achievements:
* abseiling!!
* pressing in with more signing in both my classes
* getting my blog shared on Our New Ears and a couple of business websites
* fitted two or three weeks into the last one!
* having my blog read by loads of people every day and hearing that it has helped a few other parents
Yesterday, at the NDCS event, we met two deaf role models and I was overjoyed to see two amazing girls, in their 20s, who have succeeded in their studies & turned into fabulous young women. Although both girls had a different experience with deafness, to either let a hurdle stop them doing anything they wanted, instead, they jumped the hurdles and pushed on every time.
The first girl, was a university student, on the verge of finishing her Degree and in process of finalising her Masters programme. She was profoundly deaf and wears one cochlear implant, which she received when she was 3 years old. As she wears her implant under her beautiful curly hair, it couldn't be seen and with there crystal clear speech, you could easily forget, or not even notice that she was deaf. her passion for product design to help people with disabilities, was inspirational and she obviously has a very bright future ahead of her.
The second girl, was profoundly deaf, but as hearing aids and cochlear implants didn't work very well for her, she mainly communicates in sign language. She had also been really successful at school and now works with Action Deaf Youth, which we will join once Princess is old enough.
Meeting these two girls (and another father in the group), allowed me to talk about therapy and learning sign language - fabulous information and a huge alleviation of guilt and pressure I feel resting on my shoulders.
It's always great to hear from other families, but so wonderful insight to get the views of someone who is the "deaf child" isn't he family & here what was good, what was bad, so I got loads of tips.
I hope you have enjoyed reading my posts this week, I have enjoyed writing them although, I wish I had more time to include more information. Anyway, I will be continuing to write about our family's journey with cochlear implants, deafness and sign language, I would for you to follow me and continue reading.
Goodnight,
Sara xx
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