Shoes off Mummy

Today we went to a friends house. Her daughter too has bilateral cochlear implants. But the daughter is nearly six years old so does not really play with Mary at the moment. However it is nice to meet up with another mum who understands Mary and her needs. She signs to Mary and replaces her ears without any thought and I can truly relax.

Mary too enjoys our visits there and let out a big squeal and waved her arms when we pulled up in the driveway.

The girls were playing in the garden and us grown ups were in the kitchen. This scene reminds me of the issue I have with translation of BSL into English for the subtitles. I am beginning to understand BSL and find the subtitle translations very amusing. On a TV show we watch, Wicked, one of the presenters merely shrugged. The translation was "Well I suppose so then" accurate but wordy.

Mary's Language
M: Mary comes into the room sits on the floor and thrusts her foot in my direction.
Translation "Mummy please will you take my shoe off?"
Mummy: I sign "Want shoe off"(dominant hand inserted into non-dominant hand and pulled out as though taking a shoe off)
M: Mary looks at me, rolls her eyes and thrusts her foot at me again.
Translation "You know I want you to take my shoe off. You also know I know how to sign shoe off so will you just take my shoes off so I can get on with playing, thank you very much."

Needless to say I did not get her to sign "shoe off" on that occasion. She had her shoes and socks removed and promptly left to go back outside.

This highlights the biggest difficulty I have with my daughter. Her independent, know it all spirit. In one respect it is a blessing with all the added hardships she will have in life. However it makes for a frustrating time trying to get her to respond to us and show us what she does know. Why waste time signing what you know when you can be outside playing?

HICCUPS - toddler group

We attend a special toddler group on alternate Mondays for Hearing and Visually Impaired children. It is called Hiccups which stands for Hearing Impaired Children Coming up to Primary School. It started out with the HI children and we have since melded with the VI children. It is very interesting to find out the different challenges those children and their families have.

Back to Mary, our Deaf adult friend Gavin was there and Mary spent a lot of time watching his signing. She also wore her ears very well even in the noisy environment. It was so great to see her mixing with the other children. Brilliant day. Then after Hiccups we went to our new friends house. Mum is lovely, her daughter is only 5 months and HI and VI. Be wonderful to watch how she develops. Mary found that her big sister had a rocking horse and merrily signed horse. Then after being on the horse for a while signed up and off. She was tired but is starting to sign such a lot. What a clever girl.

After a bad weekend with the ears Mary wore her ears very well today and I noticed her making a range of different sounds. I tried getting it on video but as soon as she saw the camera she stopped.

But the best news today is that she can say Mummy properly. No Mummummumm. She has said it twice today so I know it was not a fluke the other day. Now does she actually need to say anymore???!

New Word
Mummy

Scooting on a lovely Sunday

Two thing happened today that made me well up with pride. Mary 's physical development has been delayed by her Glycogen Storage Disease Type IX. Totally unrelated to deafness but affects her gross motor skills. Anyway yesterday she scooted by herself for the first time. And we had a conversation in sign about the scooter and scooting and it falling over. Mary was having a deaf day and refused to wear her ears all day. She was keen to copy my signs.

Check out the video... There is only a little sound on this which Mary makes - her "Eee" no other sound.

The sign conversation went something like this (In BSL)

Me: "Want to scoot?"

Mary: "Scooting yes"

At end of scoot Mary would try and turn it around and it would fall over. She would coever her mouth in a "oops" fashion. Later on when it stopped falling over she pushed it over and went oops. I told her in sign that no she shouldn't do that. She seemed to understand.

Nice

Tonight at dinner Mary asked as usual for food. She had beans on toast in front of her which apparently is not food. We gave her the remains of herr lunch, which had been refridgerated, ham and soft cheese on bread. She is signing good. Both thumbs up.

I sign "Lovely" (Thumb up on dominant hand and scrape your thumb across your chin, making a lovely type face)

Mary copied. And then repeated it when she started the next peice of bread.

It's lunch time Mummy

We had a busy morning shopping, sorting and unpacking. Oh and also playing in the garden.

I shouted out our upstairs window (our kitchen is on the first floor) to Mary who was sat in the garden. She heard me and managed to locate my voice. We then had a conversation about coming inside and upstairs. Which resulted in me going downstairs to fetch her! Her legs were obviosly a bit weak after hard shop. After a bit more sorting out she climbs excitedly onto her chair. Then tells me in lovely sign:-

"Time lunch mummy, now."

I repeat "Dinner time now"

Mary signs "Good"

Her "Good" is cute cos she doesnt always raise her thumb and sometimes raises her index finger instead. Today we got both. Sorry too slow for a picture though.

Mary signing driving and making the car sound. We have not specifically taught her to make the sound for a car. She picked that up herself. What a clever girl.

Wicked

Oh yeah Mary learnt a new sign watching TV on Wednesday morning with me before swimming.

We were watching the new TV show called Wicked, signed and deals with issues involving Deaf people. http://www.bslbt.co.uk/wicked/

Mary after the show was signing Wicked with a big grin on her face. Who says kids cant learn anything from telly???

Swimming in Ipswich

Mary and I went swimming with a couple of signing friends in Ipswich yesterday. Mary had a ball. After being thrown into the pool and dunked a few times she was signing funny. Although she discovered it is difficult to sign "Funny" when your arms are stuck out the side of your body by your arm bands and swimming ring!

Rough and smooth

Whilst out walking the dog we pass a number of silver birch trees. Last year I began to show Katy the concepts of Rough and Smooth and we would often have a guess and then a feel of the bark on the trees. Katy enjoyed this.

Up until recently Mary has not shown much interest in the idea.During the Easter holidays she started feeling the trees. Our Language aide with the help of a few texts told us the signs for Rough and Smooth.

Today Mary signed "Rough" and "Smooth". What a clever girl!

Further down the path she signs to me "Mummy, Look flower." WoW!!! The best Dandelion I have ever picked.

Yes upstairs!

Mary had enough eating and wants to go upstairs.

Mary plays guitar...

And drum and tambourine. Singing songs very well. Hearing all the noises and no blinking.

Remembering some things she has done

Mary has had some sound going into her ears since 29 July 2008. Over the past 9 months she has been developing relatively slowly. These are a few of the things I remember from her journey.

Day 1: She had her right ear fitted first. When we got home I made Chalky bark in the hallway she turned to him and opened and closed her mouth to copy him. She really enjoyed it.

Most of the first few months involved a lot of on/off with her processors. Very frustrating. But the perserverance has worked as she is now happy to wear them for large portions of the day.

8 August 08 She picked up the processors and put them to her ears. Showing she knew what they were for.

10 August 08 She made a "tut" sounds with her tongue and a "ggghh" at the back of her throat.

13 August 08 Started making a "mmm mmm" sound as soon as they were put on. Was very noisy with them on.

18 August 08 The processors had a wash in the muddy water in the back of the toy car in the garden. :P They dried off ok fortunately. Heard the wasahing machine from in the hallway and signed it.

20 August 08 Turned to my shout when she walked away from me at Mothercare.

24 August 08 The right processor was nearly eaten by an Emu at White Post Farm near Grandma's house. Mary got a nip on her ear. We were lucky to get it of the bird.

25 August 08 Knows when she is being talked to. Asked for them when they were taken off at bedtime. When I gave them to her she cuddled them as she turned over.

30 August 08 Singing scales "ah ah ah ah". Wearing them well. Shouted " mummm meee" from her room at about 8pm.

March 09 She turned to the sound of a water tap in the downstairs loo and also turned to the flushing of the toilet. Similar but different sounds.

Well that is all for tonight. More from the early days another time.

Mary and an ice cream.

Mary heard the flag flapping in the wind at the ice cream van and turned to the sound.

Mary aged 2 3/4. Does some signing with her Language Aide.

Talking to geese at Needham Lake

Mary heard the geese and made a "ha ha" sound to answer them.

Just testing the link

Mary playing with animal noise toy but alas no ears. Hmm.

An hour at Addenbrookes...

We spent nearly two hours in the car this afternoon for less than an hour at the Orthoptist (Eye person who tests eye sight). Well at least I only paid £1.80 for parking. Mary's eyesight supposedly is quite bad and unless we get her wearing her glasses now she will have poor eyesight always after she turns 8. Poor girl. She hates them. Will have to persevere though.

On a more positive note she wore her Magic Ears happily throughout the session. Just the evil glasses she didnt like.

No new sounds but she has invented a sign for Wotsits. Kind of like ice cream but instead of licking your hand you make an O sucking face as if you are sucking a wotsit in. All good communication.

Will fill you all in about her progress from switch on until I started this. Will jump about a bit when I remember things. Until I am up to date.

Words to date she has said
Mumma
Barbara (Bwarbwarbrrraa)
Fish (ishhhh)
Bike (bk)
Ball (bbbblll)

Girls in the mud.

Mary digging and katy singing.

Where to start...

My Darling Mary has been profoundly deaf since birth, we think. I first realised there was a problem when she was 7-8 months old, she had always been a listless sickly baby. I asked the health visitor to check out her hearing and she claimed that she couldnt be deaf because "She is a happy baby." I should have pushed harder because things may have happened quicker. Through other means we got referred to the audiology unit at hospital. She was eventually seen by paediatric consultant two days after my mum's funeral. She was tested electronically via an ABR a week later and by 17 July we had a confirmed diagnosis that she was profoundly deaf. She was fitted with her first hearing aids on the 1st August. She was 13.5 months old.
We perservered with the hearing aids for 4-5 months but there was no improvement in her vocalisations.
In December we were referred to the Emmeline Cochlear Implant centre. Numerous tests later she was admitted to the program. We were lucky as we were able to secure a place in a trial to determine if two implants were better than 1. The NHS at the time were only funding one implant. I always felt that we were meant to have two ears so it seemed bizarre to only offer one implant. Mary had her operation on 23 June when she was a week over 2. She was switched on five weeks later after a few complications with infection.
It has been slow progress but since January, Mary being 2.5yrs, she seems to have come on in leaps and bounds with her hearing and vocalising. I wanted to make a record of her journey to hearing and speaking. Please bear in mind she is still a profoundly deaf little girl and although she can hear me shout "no" and her name when she is wearing her processors, it is still very difficult for her to make out sound.
The cochlear implant is a very sophisticated, almost magical piece of equipment but it is not a cure for deafness. I call them her "Magic Ears". We are learning sign as well because I feel it is important for her to learn the language of her peers.
With this blog I am hoping to record all those little milestones she does. Hope you enjoy it.